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#151980 07-12-2012 03:27 PM
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nocam Offline OP
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This is my first post and I am not sure of a better place to start than in the recurrence area. In the signature below is my general progression. Until my situation came along I had only heard about cancer but never thought too much about it actually coming my way. I had never heard of anyone having oral cancer until my treatment was about to begin and I heard that Michael Douglas was dealing with Stage 4 base of tongue cancer which seemed to be identical to my diagnosis. As a result, knowing my diagnosis was only Stage 3, I tried to read everything I could find about Michael’s condition and was encouraged by the fact that he was recovering very well from Stage 4 so I assumed I would be just fine (if monetary differences did not matter) for I was only Stage 3. My assumptions are proving to be seriously wrong. I found OCF as a result of my reads about Michael Douglas. I am glad to have found OCF and have discovered how dreadful OC can be but realize that there is hope for all new victims..

It was decided that I would have 35+7 treatments of radiation and 3 treatments of chemo with cisplatin. With difficulty and normal repulsive effects during and after treatments I made it this far. In Jan. 2012 I had a PET scan and all cancer was gone. On a monthly basis I have been meeting with my Kaiser ENT Doctor who has been pleased with my recovery so I have been encouraged. In June 2012 I had a follow up PET scan which unfortunately shows hot spots in the previously treated area and is therefore a major disappointment. Fortunately the nodes show nothing and the cancer has not spread. Tomorrow I am scheduled for a biopsy but the ENT Doctor has looked and felt around and feels quite certain that the cancer is beginning to grow again. He has explained that the next conventional step would be surgery that involves cutting my neck, splitting my jaw at the chin and removing an area of tongue past the midline that would, with margins, leave very little tongue and involve great eating, breathing and speaking difficulties. The ENT Doctor has really stepped forward and is investigating the possibilities of robotic (TORS) surgery, if I could qualify, which would be much less debilitating. He has spoken to a Dr. Weinstein in Penn and also found that Emory Univ., here in Atlanta, has a couple of Doctors who are very capable with robotics. At the moment, if something must be done I certainly look forward to robotics vs. all else. No matter what, it seems that the failure of chemo and radiation is a sure sign of a cancers return and progressively more invasive surgery over time.

That’s all I can think to include at the moment but I may add more later. Thanks for reading my post and I look forward to any thoughts, feelings, suggestions, experiences etc. that can be passed along that will help me make the best decisions.

--------------------------------------------------------------

69 years old heavy smoker of filtered low tar/nick cigs (mostly) for +- 50 yrs.

End of 2010 to Jan 2011 sore horse throat from time to time
Jan 2011 went to ENT Doctor and nothing shows as a problem
June 2011 still uncomfortable CAT scan done but nothing conclusive
July 2011 PET scan done and something looks suspicious
July 2011 G-tube (PEG) placed and used for feeding since shortly after treatment began due to swallowing difficulty.

July 2011 biopsy proves positive:
HPI (1-3) T2N1 squamous cell carcinoma of the right tongue base treated with chemo/XRT ending Oct 2011.
Jan 2012 initial PET scan was negative.
June 2012 PET scan shows 18mm mass in the right tongue base positive to 7.2 SUV with no nodes positive.
July 11, 2012 had an MRI.
July 13, 2012 to have a biopsy to verify suspicions.




2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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Welcome to OCF! Im so sorry you are dealing with a recurrence! Oral cancer once is bad enough but anything more than that is more than anyone deserves. Ive gone thru it 3 times so I know what you are going thru.

Sounds like a major surgery is going to be in your near future. The TORS has been discussed on the forum and Ive heard very promising things about it. Please get a second opinion before you go thru with such a life changing operation. It cant hurt to hear what another cancer center would have as your treatment plan.

Wishing you all the very best with everything!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Adding my welcome! It is very important that if TORS is used that they are still going to obtain clear margins - make sure that you discuss that with the surgeon. Christine's suggestion of getting a second opinion is a good one.

There are many, many cases where surgery does the trick very well. It is a big thing to face, but with support and a positive attitude (which you sound like you have) you will get through it.
Best wishes,
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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So sorry that you have had to go through all this and now the prospect of surgery. I hope that TORS can work for you AND get rid of the cancer once and for all. Like myself Michael's cancer was positive for HPV. Even though your primary was in a region that HPV resides, it's not always the culprit. Just curious, did they test your slides for HPV? Comparing a Stage IV HPV+ SCC to a HPV- SCC is like comparing apples to oranges as HPV OC on average responds much better to the conventional treatment and therefore has a reduced chance of recurrence.

You didn't mention but I assume you have quit using tobacco?

If you continue to post and I hope you do, you should copy your "progression" into your "Signature Line". It is always helpful to have that history with every post.

Good luck!!!


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Hi there I know the surgery sounds daunting but it's doable I did it and recovered from it far faster than from radiation. In fact I was back to eating and speaking well in a few weeks though I looked like I'd gone several rounds with rocky for about a month.. wink I'm 14 months post treatment and 16 post surgery and people who don know notice no speech impediment most of the time. My cancer was not HPV related so my first course of treatment was surgery. It may take longer to heal sinc you've been radiated, but you'll get through it. Hugs and good luck... Oh and being seen at a top ccc is very important, take care


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Hello, nocam.

I can only imagine how you are feeling right now. I'm sorry that you're having to go through this again.

There may be some people on this forum who have had the same surgery that they are proposing for you, so hopefully one of those members will step up.

I am hoping for the best and least debilitating option for you. David has brought up some very good points about the different types of BOT cancers and whether or not you have discontinued smoking.

Please take care and keep us posted as you are able.

Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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I am so sorry that you are facing this. I too was told they were going to go through my neck, split my chin/jaw and remove part of my tongue, in the end. They did not have to split my chin/jaw they did remove about 70% or more of my tongue. But I have learned to adapt. My speech is effected but most times it is not extremley noticible to others. They replaced what they took of my tongue, with a graf from my forearm and what is now called my tongue (flap) is fairly tethered to the floor of my mouth. I eat pretty much everything some things I have to dig around my mouth with my finger. But it is ok. I can taste. I think the big thing is to get it all!! I was upset for a while I thought maybe my dr could have been a little more conservative and save some more of my tongue, but now after going on 3 years cancer free and continuing to read these forums I am glad she did what she felt nessesary. I just hope your dr is confidentin his ability to do this surgery successfully. Make sure you have an ent surgeon that specializes in head/neck and tongue cancers.


Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear

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nocam Offline OP
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I sure wish I would have found this site before I ever did anything to begin with. In retrospect I think I made a serious mistake by accepting the choices made for me by my insurance provider. I think I should have gotten a second opinion from the very beginning by those who specialize in throat cancer.

The MRI (that test was hard to do) though fuzzy proved positive. The biopsy (very expensive) proved positive. I had to have the biopsy done in a hospital because I have severe heart stenosis. The ENT Doctor had scheduled for me to meet with Dr. Wadsworth (anyone ever heard of him) at Emory Univ. in Atlanta about possible robotic. The Dr. reviewed the MRI felt around and determined I was not a candidate for robotics. He indicated that extensive neck/chin surgery was most likely. I then meet back with the ENT who had already scheduled to perform the +- 12 hr operation at Northside Hosp, last Friday, (July 27th) and for me to meet with a plastic surgeon. He explained that he had not performed the operation for about 10 years and the plastic surgeons specialty was breast reconstruction and things like that. I have ultimate respect for the ENT Dr. but after a brief discussion he agreed that Emory Univ. would be better for me considering all things. I was relieved! In the meantime he made arrangements for all of my records to be transferred to Emory Univ.

Dr Wadsworth was in Canada last week for a conference. I have no idea how much time I have but I believe I will be meeting with him this week. In the meantime Emory had me do another PET?CAT scan. As I understand it Dr. Wadsworth meets this Tuesday (July 31) with a board to determine what path to take with cancer patients like me. On Wednesday I may be meeting with Dr. Wadsworth so he can explain what will take place next. I do not know how to get another opinion unless all my records could be sent to someplace like MD Anderson or Sloan Kettering for a quick opinion.

davidcpa and Kerri

You ask about smoking. I quite the minute I heard cancer. Although I have tried many times in the past it seems that all I needed was to get cancer to cause me to immediately stop. I now look back and wonder why I, or anyone, choose to be a human smoke stack. Fortunately we live in a different time when it is no longer fashionable and my son is learning the easy way that it serves no purpose. I was born to soon and with minimal willpower. I now think back a lot to how I got started and how much I disliked it all along. I started in high school as a result of dating a cheerleader/home coming queen type who smoked. I though smoking would help me win her favors etc. She taught me how to inhale and all. I use to actually drive around and practice so I could get it right. She eventually dumped me and I was left with nothing but a bad habit. In the solitude of my profession a cig became a constant companion. I also drank more than my fair share over the years. For many years now I have had at least a couple of large glasses of wine every night. I know the reason for my cancer but I am saddened to read of those, much younger, who never smoked and hardly drank who have been over powered by this dreadful disease in the same area. I am now very depressed but I am lucky to have made it this far.

Thanks to everyone for responding, your kind words, thoughts and suggestions


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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Welcome to the boards, sorry you had to find them but you'll find a lot of great support here. I'm currently a 3x OC survivor with my most recent bout this May.


Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs
2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16
3rd - SCC right base oral tongue, surgery, hope.
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Nocam

You did not make a mistake getting getting radiation and cisplatin the first time around. Take a look at DavidCPA's posts and signature line: that's what he did and it worked great. A second opinion would more than likely have advised the same course of action.
Even for smokers who have base of tongue (BOT)cancer, the preferred treatment is to avoid surgery as much as possible since for BOT the surgery is brutal. It is usually reserved for recurrences.
I had my jaw split open, my base of tongue cut out, a flap from my wrist transplanted to the base of tongue, a flap from my groin transplanted my wrist to fill in for the wrist transplant. The location of my tumor and the size were considered not suitable for TORS. Unfortunately, the pathology report post surgery showed perineural involvement so I needed even more radiation and chemo which left me with more complications than you should have. My ENT surgeon does this type of salvage surgery about once a month and it is indeed important that your surgeon have regular experience. Good luck
charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Sep 2006
Posts: 8,311
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Don't beat yourself up over the past. Only the future matters now and quitting tobacco is a very positive move.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I ditto what David said - It does no good to stress over the past. The important thing now is where you go from here! And it sounds like you are taking control and moving ahead!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Late this afternoon I meet with Dr. Wadsworth of Emory Univ. He explained that if I did not have surgery (I am going to have it) my time left would probably be 6m0 to a year. He said I am going to loose my tongue but if he finds any can be saved he will save it. Untill he begins the +-12 hr surgery he will not know whether I will loose my voice box butit is a good possibility that I will. Tomorror we start preparation for surgery, scheduling, which will be soon.

Charm2017

I understand that radiation and cisplatin is the way to go. I just wonder if I would have gone somewhere elese perhaps they could have mapped things better better and perhaps used better equipment although I do not know that they did not use the best equipment avaliable. I am only Stage 3, why did things not work and come back so soon with such dreadful potential cure requirements. Nothing really matters now-I just wonder as I look back.

As I look forward I wonder, more importantly now, how to find goals and become ambitious again toward the future. I feel wothlessness and a lack of purpose coming.



2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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I know its not easy to get past everything you have gone thru. Try your very best to limit the 'what if' thinking only a few minutes then move on and think about other more positive things. Its not possible to go back and change what has already happened so thinking about changing the past is not productive at all, it will just make you worry more. You can ask at your treatment center what resources they offer for cancer patients. Many facilities have therapists to speak with. Going thru the horrors of fighting cancer can cause many patients to need a hand in coping. Some take meds, others talk it out. Both ways are tools to help you get past this bad spell. Try making small goals to look forward to. Everybody needs a reason to get up in the morning.

Good luck with everything!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Mar 2008
Posts: 3,082
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Nocam

I went to a highly rated Comprehensive Cancer Center with top notch RO who has been a pioneer in re-radiation and doing things other ROs say can't be done. My MO was heading up two clinical trials as well as working on HPV issues. Yet despite all that, I ended up with my cancer coming back and needing the same long surgery as you are facing. Plus I was not a smoker, and had an HPV positive tumor so I was supposed to do well. Stuff happens.
Take it a day at a time
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Mar 2011
Posts: 1,024
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Hi Nocam,
Unfortunately you are not alone. Look at my signature.
Kris's BOT Ca HPV +ve was also treated
in the usual manner with chemo/ radiotherapy. He had a clear PET in June . But there was obvious tumour reoccurrence in Jan '12, only 10 months after completion of treatment. He underwent a total glossectomy, total laryngectomy etc. in March.
Kris had not smoked for 16 years. His tumour was HPV positive. Go figure.
I am scared to say he is doing well.
One day at a time,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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So far I have not been scheduled for surgery but it should happen very shortly. Even though I am not looking forward to surgery I am concerned as to how much worse things may be getting as a result of the delay. In the meantime as I look down the forked pathways of option I wonder what others have considered, chosen and done as they hope for the best outcome. My thoughts become so muddled as I try to look closely at each alternative I can think of (there may be others) but perhaps the thoughts of others will help me to make the most beneficial decision.

Self Termination: Considering al else the thought has flashed by but seems worthless for it instantly terminates all hope and positives.

Palliative Chemo: It is my understanding that some folks choose this route. As with all things related to cancer there is no certainty as to how things will progress toward the end. Some can live reasonably normal lives for a few months and others can do the same for a few years.

Accept current Doctors proposal: Emory Hospital (anyone here gone there?) in no uncertain terms has now told me for the second time what they will do if I want them to provide their services and a second opinion is out of the question. To make a decision for treatment they have explained (as typical) that they have all cases reviewed by a large board of staff specialist in order to determine the treatment they will perform. Their decision is to remove my tongue and I should accept that during surgery they will most likely remove my voice box also. I am having one heck of a time accepting that approach for it is so permanent; the struggle to recover and exist will be enormous (do I have the willpower to deal with all the things/parts/pieces involved to survive). I understand and respect their approach and realize their final decision might be the best that be currently made by earthlings. However, in my situation I keep wanting to seek out other alternative and hopefully uncover something that will make it all go away. I have found that John Hopkins is one place where I can send all my records and get a second opinion. In order to get a second opinion I must have a “Consultation Request Form” signed by my physician but my physician will not sign such a form. I understand that decision if it is true that no one else can offer any better prospects but how do I know that better prospects do not exist.

Find the best on earth: If I had the money I would try to find (who can tell you who and where they are) the best doctors and cancer centers on earth and consult with each and everyone of them before accepting and making a final decision. However, I am not in a position to do that. To leave my immediate area for treatment would be a hardship but to get the OLD better quality of life back I would certainly consider it. So far I have looked at Sloan Kettering, MD Anderson and John Hopkins plus of late been introduced to the Univ. of Pittsburg as being a place to consider. Of the first 3 (which I understand to be amongst the tops) John Hopkins is the only one that will offer a second opinion, without going there, if you send them all of your records inc. PETS, MRI etc. I can and will do that if I can get a physician to sign the necessary papers. From the info provided I would certainly hope they could provide a reasonably accurate diagnosis and hopefully positive and to my liking. If such were the case then I would certainly want to go there for direct observation. I know nothing but I wonder why immediate personal direct personal observation is so important. It seems to me (a know nothing person) that good records from a reliable institution is good enough for a start. From my experience, the only thing that happens during direct observation is someone sticks their finger deep into my tongue base area and looks down my nose with a lighted scope of some sort. I am sure all institutions have policies in place for their own good reasons but I would hope it is not monetarily driven. At Sloan Kettering I was told “at this time we do not offer second opinions without seeing the patient”. Maybe they will in the future. On a couple of occasions I have heard, from professionals, that a reason for some of the institutions ranking higher than others is because of PR and marketing. I understand that because we are certainly a marketing society. However, in the field of cancer it seems there is more than enough work for everyone and I would prefer to think everything is cure driven and not driven by comprtitive monetary benefits.

Well, I could go on (may later) but I have been up most of the night and it is past 6:00AM and I must sleep. Once again, thanks for reading through all my stuff and I look forward to any thoughts anyone can share.




2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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Posts: 5,260
"OCF Canuck"
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I would get on a plane and go to md Anderson - or Sloan kettering - your life means everything - money does not. That was first off - now secondly i would get myself to another GP. Seriously this guy is not acting in your best interest. What dr denies a patient a second opinion? No good one that I know of. My dr is normally expected to consult and refer within his hospital and collegues - I live in a suburb of Toronto - When I found out I had tongue cancer (with no precursors for it) he expedited my tests - and didn't say boo (didn't even enquire as to who had given me the pretyped referral letter with his name and address on it!) when I asked him to sign it - he did it - so I could be seen at the top ccc in Canada. This is highly unusual but he was all for it...

Your dr is being totally wrong at best - negligent at worst. The one thing I do stress do whatever you choose - quickly. Also did they determine your cancer HPV + status? Normally chemo and rads are the treatment for HPV+ bot cancer and it responds, but non HPV requires a little more agressive treatment, often surgery first. Locationwise it's usually HPV if it's base of tongue but not always. Definitely push for a second opinion. I was under the impression. That most CCCs In the states will take you without a referral.

You have a right to a second and third opinion if you want one it's your health and your life.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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As I read thru all of your posts and put the pieces together of what you have gone thru, I wonder about a few things. This doctor of yours seems to be very competent but at the same time they refuse to sign a form to allow you a second opinion. To me, this sends up reg flags. Any reputable doctor would welcome their patient a chance to hear another major cancer center's treatment plan. I would ask them point blank.... " my obtaining a second opinion?"

I would get that second opinion ASAP!!!! By waiting it is not doing anything positive for you at all. You are worrying more and the cancer could be treated easier by doing surgery now. Once you have this major surgery you cant go back and put anything back in place, once its gone, its gone for good. Surgeons cut so thats always what they recommend. In this situation that would be your only real option but the big question is which cancer center is going to give you the best chance for getting it all and your after surgery a good quality of life?

I sense you are becoming depressed. This is very common with cancer patients. A few weeks ago I suggested you seek out someone to talk to. Ask at your hospital if they have a therapist or counselor who works with their cancer patients. Check with your health insurance what your coverage is and if they can send you a list of local therapists. Nobody gets thru this alone, many lean on this forum to help get them thru whatever they are dealing with. Its not like deciding which pair of shoes to buy, you are facing life and death decisions here which is bound to be upsetting. Do you have a large family? How about close friends who understand about cancer? Too often nobody 'gets it' which makes a patient feel even more isolated and alone in this. Keep posting, we will help you get thru whatever you decide to do. We are in your corner!

No more hesitating. Please get that second opinion, even if you need to get your family doctor to give the ok.


Here are a couple resources to help you with your travels...
Free airfare for cancer patients
List of free airfare companies
List of free lodging for cancer patients

Last edited by ChristineB; 08-09-2012 05:41 AM.

Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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If I were in your shoes, I would get a 2nd or even a 3rd opinion – and ASAP! I was “only” stage 1 when first diagnosed in 2005 and had a recurrence in 2010. Over the years I’ve been to 4 different hospitals/cancer centers including Johns Hopkins and as many others have found you will often get a completed different opinion at each facility. From personal experience I would highly recommend Johns Hopkins. MD Anderson and Sloane are also tops in the field.

I find it hard to believe that your doctor would discourage you from getting a 2nd opinion – it is your right as a patient to do so. If you haven’t done so already, call and request copies of all your medical records including any biopsy reports and scans that were done. I have collected copies of most of my medical records over the years and when I would go to another specialist I was able to fax or mail them to the doctor ahead of time (and quicker than waiting for your current doctor to send them).

Good luck!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2020
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Nocam - You sure have had a lot to endure ! -I hope someone with more direct experience than I have can chime in with their ideas or advice.

Re Emory Hospital, it really bothers me that (as you mention): <<In order to get a second opinion I must have a “Consultation Request Form” signed by my physician but my physician will not sign such a form.>> This really surprises me since I thought that in the interest of healing, physicians were all for second opinions! They also say that << Their decision is to remove my tongue and I should accept that during surgery they will most likely remove my voice box also.>> The “most likely” part seems kind of “iffy” to me in that it could also happen that they could leave the voice box.

In an earlier post re Dr. Wadsworth, you mention: <<He said I am going to lose my tongue but if he finds any can be saved he will save it.>> So maybe a part could be saved?

Also, I can't help but feel that there has to be a way to get a second opinion. I'm sure others know more about this than I do. I sure am hoping for better and more hopeful days ahead for you!






Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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The reasons most (virtually all) institutions do not give second opinions without directly seeing the patient is that they can't make a decision on someone else's observations that leaves them liability free, and which they are sure have covered all the bases to give them the total picture. I had a work up at a good institution. I opted not to get treated there but to go to MD Anderson based on a profession recommendation (I had been lecturing to oral surgery groups for some time and had lots of contacts).

So MDACC tells me that I need 4 days for my consultation. Say what? They insisted on redoing my scans, blood work, physical exams etc. before they would put me in front of their tumor board. This is a partly good business from a legal standpoint, and there are just big differences in the way things are done even at the biggest hospitals, regardless of the first institutions reputation, the second institution only trusts their own data. It is the norm.

Given the way these guys are trying to PREVENT you from getting a second opinion, I would be out of there immediately looking for one. OCF can refer you to people if you like, and by law, your current institution has to provide your records to the next place. They don't have a choice.


Last edited by Brian Hill; 08-09-2012 06:48 PM.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Nocam,
Read what Brian has to say several times--lots of good information. I've just got to say I don't care what my situation is I am just stubborn enough that if I ran up against a doctor who indicated he/she would not sign a request for a second consultation (I've never heard of that form) I would say, "Oh, yeah . . ," and start walking out the door. "Sorry buddy, it's my life, my body, not yours."

I'm not saying Emory is all bad, but lots of folks from Atlanta are in the ENT waiting room at MD Anderson, I can tell you that for certain.

Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of February, 2018
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Nocam,
Emory University has an Ombudsman's office. You can look it up on the web. I would call them and let them know one of their doctors is refusing to let you get your records to another facility for a second opinion. Time is of the essence here and letting this doctor gum up the works is not good for you.

I went to most of the places that have been mentioned here. I found while I was talking with the various doctors about other places I'de been to that each place has it's own prefered approach. They would say "oh yae they are big in chemo" or "those guys prefer surgery". The reason I mentioned Pitt is that the trial they are doing now is concentrated on re-radiation.

Sloan is well known for their surgery and may offer you a less invasive option. MDA (at least in my case)likes to hit it hard with chemo first to reduce the size and do surgery second. They have the robotic surgery there also.

The point is that you may find an option from a top flight place that is more acceptable to you.

DO NOT let this doctor define the rest of your life.



Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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Nocam, everyone is giving you great advice.
My concern is the length of time all this is taking.
You had a clear PET in January. 6 months later in June it is back.
It is now August.
We have been through this surgery you are being offered and I will always be here to help you should this be the route you take.
But please, get this sorted soonest. ASAP.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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Cheryld

As of today I am going to start trying to do exactly what you and others have suggested. I am going to call Sloan to see if they can work me in ASAP. Late yesterday I was contacted by Emory and a surgery date was set for August 27 th. I hope I have enough time to do what I think is necessary. At the same time I am afraid to much time has already slipped by. I do not understand Emory’s lack of willingness to help me with a second opinion either but maybe I am looking at things incorrectly. I am sure that Emory and the Doctors there are some of the best and I am not someone to find fault with either. With my limited knowledge of things I will try to explain how I see things have gone together a little better.

My insurance is Medicare and extended coverage (Senior Advantage) is through Kaiser Permanente (KP) which also provides a lot of medical services. Insurance is also a major concern. I am not sure how much coverage I will have as I go from place to place. My ENT doctor with KP arranged for me to have chemo through KP and radiation through Peidmont Hosp. At the time of reoccurrence KP was going to have my ENT perform the tongue surgery through Nothside Hosp. It must be that KP has a relationship with Northside and they have KP Doctors doing the work at the facilities of others. For various reasons (one being a heart condition) KP referred me to Emory. At Emory Dr. Wadswoth (I guess I could refer to him as my lead Dr.) was assigned to my case. For the most part, except for meeting with me, Emory did not do anything special other than run a PET?CAT scan on me. They have given me a copy of that scan. My case, along with their PET/CAT scans as well a lot of other info including KP PET, MRI scans etc., was presented before a board of specialist who determine the best route toward cure. In my case the removal of the tongue etc. was decided upon. When I met with Dr. Wadswoth he explained everything to me and I questioned the need to remove the entire tongue. Perhaps in consideration of my fear it was my understanding that he would save some of the tongue if he could but it could not be expected and I understand that. We never discussed 1/3, ½, 2/3 it was the entire tongue and I signed off on the removal of the entire tongue. Loss of the entire tongue and all the ramifications is hard to accept and naturally depressing. I felt the least I could do for myself was to seek out a second opinion.

At John Hopkins I found the opportunity to get a second opinion without visiting their facility. Below is a like to the site showing the checklist of requirements.

http://www.hopkinsmedicine.org/seco...olaryngology/request_second_opinion.html

One item under “Talk to your Physician” is called “Consultation Request Form”.

http://www.hopkinsmedicine.org/seco...ology/pdfs/Consultation_Request_form.pdf

The way the form reads, as explained to me by the Doctors assistant, is that the Doctor is asking for a second opinion which he does not need. I never thought of it that way. I thought of it as me seeking the second opinion-not the Doctor-for he surely feels confident with the decision of the board.. Emory’s position, makes sense, it was explained does not need a second opinion. As I understand it Emory has a board of specialist who are perfectly capable of making a decision regarding the best treatment possible. I interpret that to mean the opinions of anyone else is meaningless and that MAY be true. With respect toward everyone at Emory I understand their position but my failure to get a second opinion seems negligent on my part. If they would have told me to go back to my ENT Doctor at KP and maybe he would request a second opinion, without my asking I would have done as told.

Yesterday I sent an email to my ENT Doctor at KP. As the folks at Emory said after I ask, maybe he will authorize a second opinion. Maybe it was my responsibility to ask and if it was I am glad I finally did so. If my ENT Doctor at KP does not sign the form I am not sure what I should do next. Today I am suppose to be able to pick up all my records from KP. With those records and the disk from Emory I will prepare to send everything to Sloan, John Hopkins and Univ. of Pittsburg.

Of major importance to me is for everyone to know that I do not think the folks at Emory have done anything wrong. I just don’t understand why or how some things are done.

They did not determine my cancer HPV + status.

ChristineB

In the part above addressed to Cheryld I have tried to include some of the things noted by others. I am like you, I thought that a second opinion was encouraged and I find it admirable for Doctors to suggest them if for no other reason than the patients piece of mind. However, in my case other attitudes must come into play. As you have suggested, I am inquiring about therapy and of all sorts. I do not have a large family but the few I have are very caring. I have no friends nor do I know of others who have cancer.

Thank you ever so much for the information regarding free air travel and accommodations. Such assistance is desperately needed and I will definitely follow through in hopes of assistance. I wonder if there are any free accommodations around Sloan Kettering.

Susan2992

If everything falls into place I will be getting an opinion from Sloan, John Hopkins and Univ. of Pittsburg. As you suggested, I am getting a copy of all my records for my personal files.

Anne-Marie

It is all very “iffy” and for the most part I guess that is to be expected in the field of medicine. I suppose one way to prepare a patient is to let them expect the worst. Anything less than the worst is a gift. The most I can hope for is to have some tongue and my voice box but I expect the worst.

Brian Hill

Thanks for helping me to understand some things much better. The second opinion part is a hurdle I hope to get over but getting a copy of my records is not a problem.

AnneO

I guess it is just an Emory policy situation and perhaps it only applies to someone like me in certain situations. It is interesting what you say about a lot of Atlanta folks being at MD Anderson. There must be some very meaningful reasons for someone to deal with going so far when there is a noted local hospital. I saw something recently, if I recall correctly, that MD Anderson is in the top 5. and Emory is in the top 65. Makes me think of Michael Douglas in CA, where there must be some excellent Doctors and institutions, going to Sloan in NY. Economics surely affects a vast majority. Are you in Texas and have you gone to MD Anderson?

Kelly 211

As I mentioned I was sending an email to Dr, Ferris at Univ. of Pittsburg. I sent the email and was pleasantly surprised to receive an email reply from him within 15 minutes. I also watched a video he did for U of P. He is a very impressive guy who must have been a pleasure to work with. How long did it take you to get an appointment at Sloan, how long were you there and where did you stay?

tamvonk

I to am very concerned about the time slipping away and fearful that things are surely getting worse. One delay I am sure is due to Emory relocating a part of the cancer facility to a new location nearer to downtown Atlanta. Good for them but perhaps tragic for me but I hope not.. Kris has been through it all and I hope he is doing well. I will soon read all of your post and I am sure I will benefit greatly from them.

THANKS to everyone for responding. Everything mentioned has been very very helpful

Last edited by nocam; 08-10-2012 07:54 AM.

2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Dec 2010
Posts: 5,260
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If someone gives me top 5 or top 65 - I know who id choose. wink top 5 will likely have innovative techniques, and the best of the best - Give yourself the best shot at survival, and least damaging option. On another note there is someone here - misskate who's had her entire tongue removed she's doing extremely well. Great on getting the second opinion. wink hugs!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Nocam,

Sloan was a little funky in the way they approach a second opinion. They requested that I fax my paperwork and then bring any film in with me.

The doctor I wanted to see was at a convention when I first called but was soon to be back in the office which was fine for me as I just put them last on the list of places I was going to see.

Lastly, My sister lives about 1/2 mile from Sloan in NYC so I just stayd with her. Actually put an extra day in so my wife and I could see a few sites while in town.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Sep 2009
Posts: 618
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By the way, The doctor I saw at Sloan was Jatin Shaw, one of the best base of scull cancer surgions in the country


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Jul 2012
Posts: 61
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Kelly,

Once again, thanks for the info. Everything you mention is very helpful to me now as I try to finalize and make good decision. It seems you do excellant research and find things that are truly in your best interest. For your special situation you go to MD and Sloan (no help) then somehow find U of Pitt who can help. Do you tell them all you are coming there just for a second opinion. I assume if MD or Sloan would have offered some positive prospects you would have had treatment with one of them.

I spent most of today getting CD's ready to send out. Planned to send to U of Pitt by noon but could not make it. I tried to call Sloan on Friday but never got through. Do most have you send things then meet? All my text stuff,+-500 pages I am told, is on CD.It sounds like Sloan wanted the text first and I wonder if they just wanted paper. Between MD and Sloan which did you feel best about. I guess neither since neither offered a possible solution. In my case I am hoping to find a place that will tell me that they do not have to take out my tongue and voice box. If MD, Sloan and U of Pitt can not say that then I guess all is lost for I would not know where else to look. Also, I cannot go to MD and Sloan so I am trying to pick one and wish I could figure out which might be best for my case.

Did you just fly in and out of MD on the same day? If not where did you stay.

Thanks for any info provided. It is encouraging to see that you have found a way to move forward in a positive way after being told it was not possible by a few of the best.

Last edited by nocam; 08-11-2012 08:46 PM.

2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Apr 2009
Posts: 329
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Nocam,

Seeing you're in Georgia did you try to get in touch with Moffitt Cancer Center in Tampa. A few of us go there we've all had great treatment. I think it's at the top of the list for Cancer Centers.

Just a thought.

Take care,
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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Posts: 61
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Hello Connie,

Thanks for mentioning Moffitt and I will try to find out more about them. The only cancer hospital rating list I have seen is the following and Moffitt is toward the top but not as high as Sloan.

http://health.usnews.com/best-hospitals/rankings/cancer?page=3

I wonder if any of these hospitals specialize in base of tongue cancer or clinical trials for such.

I see you are from NY. Did you consider Sloan in NY? I see many people from one place go to other places and I wonder why.


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Jul 2012
Posts: 61
nocam Offline OP
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Hello Connie,

Thanks for mentioning Moffitt and I will try to find out more about them. The only cancer hospital rating list I have seen is the following and Moffitt is toward the top but not as high as Sloan.

http://health.usnews.com/best-hospitals/rankings/cancer?page=3

I wonder if any of these hospitals specialize in base of tongue cancer or clinical trials for such.

I see you are from NY. Did you consider Sloan in NY? I see many people from one place go to other places and I wonder why.

Last edited by nocam; 08-12-2012 08:13 AM.

2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Dec 2010
Posts: 290
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Nocam,
I feel that none of us can or should pick your hospital for you. Lots of the ones mentioned are very good. Could you get different ideas at different hospitals? Of course. I think you are going to have to decide yourself, unless something Kelly tells you will make a difference.

I did go to MD Anderson, & I live 11 hours away in Kansas. But we could drive it in a day, so that was one reason why I went there. I lived there in an apartment for treatment. A driver from the apartment complex picked me up & took me to my appointments. I had places to exercise, and I could get food fairly easily. My sisters-in-law took turns staying with me with my husband flying in on weekends. In retrospect, it was probably easier on me in some ways being there than being at home & having to drive at least an hour each way every day.

One reason these hospitals are recommended is the volume of patients they see who have oral cancer of some form.

Good luck with your decision.
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of February, 2018
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Posts: 329
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Nocam,

I live in FL I was from NY. Long story on how I got to Moffitt it's on the forums some where. I didn't have a clue about Cancer Centers.

I drive just over 2 hours one way for my appointments. I would drive forever to go to a Cancer Center. Moffitt is one of the best, I figured you living in GA. the drive might not be that far for you that's why I suggested it. Also, I was told if I needed Chemo and Radiation they would work with the facility in my area so I wouldn't need to travel back and forth or stay in Tampa.

Check out their website. I think the majority of us have been to one of the best Cancer Centers.

I know DavidCPA goes to Moffitt he's on the forums.

Hope all goes well.

Connie



SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



Joined: Jul 2012
Posts: 61
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I wish so much that I would have found this site the day I discovered I had cancer and before treatment (before cancer would have been better) for it has given me info, understanding and so much help etc. as I move forward.

AnneO

I think it would be very difficult for anyone to tell me what hospital to go to. However, if someone made such a suggestion I would welcome their good intent and try to learn more for they may have told me about something or a place I should consider. All thoughts given are extremely valuable, as I move forward, for they enlighten me to considerations I may not of thought of otherwise. I believe I have already made some erroneous decisions but asking questions here will hopefully help me to make better decisions (it ain't easy) in the future. My major objective at the moment is to avoid the total lose of my tongue and voice box. One thing I know is that you can get differant suggestions from differant Doctors (learned that here) but I am hoping for consistant suggestions from various reliable sources that such sever surgery is not necessary. If necessary I must accept it but until then I want to know of any other options for that which is taken away can never be replaced.


One thing you mentioned that I can really relate to is your elimination of a one hour one way trip each day for treatment. My trip was +- 1 1/2 hours one way each day. The nausea, and ugly consequesces, I experienced in latter weeks from bouncing around in a car for that time made me want to give up. The distance was not so great but the stop and go trafiic made for a very long unbearable trip.

ConnieFL

I really appreciated your introducing me to Moffitt. One thing you mentioned that is interesting was their willigness to work with you locally so you did not have to stay in Tampa for treatments. Their reputation and ability to direct treatment from afar probably produced a better outcome and was a great convenience to you. I did not realize a cancer center would operate this way but with technology being what it is today it seems natural.

Last edited by nocam; 08-14-2012 06:04 AM.

2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Apr 2009
Posts: 329
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Nocam,

If I needed Rad/Chemo Moffitt would have worked locally, as it turned out I didn't need it.

My yearly checkup is Sept. 20th. One thing I did do this week and I never did before was call Moffitt asking for a CT Scan. I asked my Surgeon's right hand nurse if it was possible to schedule a CT/Scan with and without contrast on my next visit. I want the Scan from my waist to the top of my head. Within 24 hours he got back to me, he saw no problem scheduling it before my appointment and I would receive the outcome before driving back to Fort Myers. Am I paranoid, you betcha.

I love the place, my surgeon, his nurse and all the staff, they are so kind and considerate.

Yes, there is a lot of info on the forums remember one thing you are your own best advocate. You know what's best for you and you know your body better than anyone else.

I hope all goes well with you.

Take care,
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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I was hoping to hear something yesterday but I just received an email (text shown below) from my ENT Doctor who I have always thought very highly of. His reason for not signing the form seems much differant than the reason from Emory. Emory's decision was perhaps based more upon principal. Link to the form

“Consultation Request Form”.

http://www.hopkinsmedicine.org/second_op...equest_form.pdf

Anyone have any thoughts about this?

" I read the "Consultation Request Form" from John Hopkins Medicine. This would have me sign a document requesting the medical second opinion. In fact, this is an opinion you are requesting. I am not convinced that obtaining an opinion without face to face patient contact is a good idea. It seems to me that John Hopkins recognizes the limitations of such a consultation and desires to have a "requesting" physician share this burden. I don't agree with this approach. I hope you understand my point of view. You are faced with a difficult and life threatening medical problem and I don't believe this approach can satisfy the needs of a true consultative medical opinion. Please feel free to discuss with me further."


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Mar 2008
Posts: 3,082
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Nocam

My thoughts are that your doctor seems to think that he is an attorney and is twisting the facts and words. Of course only the patient requests the second opinion, and the "requesting" physician is bearing only the burden of a gatekeeper, certifying that your medical records are correct and that his planned treatment is not 100% guaranteed. I've seen this type of pseudo legalistic analysis often, using in tax protestors' briefs.

Ask the chief medical officer of the hospital where this guy has privileges if he would sign it. Also involve the Patient Advocate. Sorry to hear about this.
Charm

PS: I've been a lawyer for 40 years now and started off in medical malpractice so I've seen this terrible behavior before.

Last edited by Charm2017; 08-14-2012 04:58 PM. Reason: added PS

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jul 2012
Posts: 61
nocam Offline OP
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Link to the Consultation Request Form shown" above did not work. This link should work.

http://www.hopkinsmedicine.org/seco...ology/pdfs/Consultation_Request_form.pdf

or

http://www.hopkinsmedicine.org/second_opinion/head_neck_surgery_otolaryngology/download_forms.html

Charm

The ENT Doctor is the head of the ENT dept at a Kaiser Permanente (KP) facility. I think KP partners with various hospitals to use the hospitals facilities to perform surgeries etc.


Last edited by nocam; 08-15-2012 12:22 AM.

2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Mar 2008
Posts: 3,082
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Nocam

Why not file a complaint with Kaiser Permanente - KP must have a policy on second opinions. This site has a drop down menu that lists Georgia
KP complaint site
Be Ultra polite and concise: Something like this;
My doctor (name) refuses to sign the necessary paperwork from John Hopkins for a second opinion on my cancer TX. Please help


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jul 2012
Posts: 61
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Charm

Thanks again! Instead of complaining I am going to just make an appointment to meet with either MD Anderson or Sloan. At the moment I am leaning toward MD Anderson unless someone were to suggest Sloan to be a better choice. I have spoken to Sloan and as Kelly211 mentioned they have a unique method with records etc. They want text info (I understand I have about 500 pages) before meeting and at the meeting bring all the CD's of PETs, MRI etc. Within the hour I will speak with MD Anderson about their procedure. To my mind, maybe not right, it seems sending all before meeting would be better.

My big concern now, other than back and forths to Texas and more time lost, is insurance. I have Medicare and Kaiser (Senior Advantage) and I am not sure how this might work with MD Anderson. I recently saw someone mention KP (Senior Advantage) but I am not sure if it related to MD Anderson which I have also seen mentioned recently. I will do a search.

Last edited by nocam; 08-15-2012 08:23 AM.

2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Jun 2007
Posts: 10,502
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Here is a link from the MD Anderson site that discusses insurance.


MDA Insurance

Last edited by ChristineB; 08-15-2012 08:55 AM.

Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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nocam Offline OP
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Thanks Christine,
What I have foundout so far is that MD Anderson does not accept Meicare with Kaiser Permanente as a supplement. you give them the Medicare info and a few other things and they will tell you immediately. If the girl is right I can only go by pre-pay.

I have checked with Sloan Kettering and the Kaieser part is not a problem if I can get authorization from Kaieser. I have contacted Kaieser and the request has to go before a board who makes a yes or no decision. That can take days but I started the process.

In the meantime I guess I will go on down the list of top 10's and see what the next one says.

Real concerned about more time beinglost.

Last edited by nocam; 08-15-2012 01:04 PM.

2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Dec 2010
Posts: 5,260
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Time is of the essence push and make noise, hugs!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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I was suppose to have surgery on August 27th but I put it on hold to look at some other alternatives.

I have read here and been told a bit about a portions of the tongue being removed and replaced with a flap that was skin from some other part of the body. Has anyone heard of and had experience with a portion of the tongue being removed and the remaining tongue being rotated to fill the gap created by the the gap created? It seems like a promising approach for it seems it would mean no loss of feeling, taste etc.and would maybe help reduce the possibility of asperation problems.

I have read here about folks having radiation for a second (sometimes even three times)and I wonder what the effects were like. As I understand it anything beyound a normal dose can be very detrimental. It has been suggested to me that Cyberknife would be worth considering but I wonder if a possible cell kill would be worth the risk considering other negative effects.


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Dec 2010
Posts: 5,260
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Hi there I've had a portion of my tongue removed.. And rebuilt they did a great job. I have a bit of a lisp when I'm tired but usually i sound pretty clear. Mind you it depends on how much they remove and location as well - if you're BOT did the Tumor spread to your tongue? I'm surprised they are suggesting this type of surgery - also yes there are quite a few here who've had. Numerous sessions of radiation , one woman I know has had it 5 times I believe. Best of luck.

Last edited by Cheryld; 09-08-2012 09:20 PM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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CherylD

Thanks for responding. I see that you are about the same as I-T2N1. I don't think I have "MO" whatever that is. As I understand it I am BOT but I do not know if it spread beyound that point for I just assumed that was tongue. How much of your tongue was removed? Was it rebuilt with skin from another part of you body. I am sure I did not explain what I understood before very well and this may not be much better. The Doctor drew me a diagram which was easy to follow. The diagram shows a horizontal portion of the tongue being removed. In the void that remains instead of filling in with skin from the arm etc (I guess thats a flap) the tongue would be streched and rotated then stiched to the remaining tongue to fill the void. As a result the tongue would be shorter. There would be some speach deficiancy for the tongue would not reach the teeth. Is this perhaps the way your surgery was done and therefore causing the occassional lisp? This type of sergery is new to me but just about all surgery is new to me including some sort of flap approach.

Do you know who the lady is that had +-5 radiation treatments? I would like to talk to her, as well as anyone else, about their experience with treatments beyound one and Cyberknife.



2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Dec 2010
Posts: 5,260
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Hi there M0 means metastacies - moved out of the tumor, and nodes and somewhere else, lungs, etc.

Hmmm... Maybe it moved up from the tongue base. I had 1/3 of my tongue removed and replaced, dr. Rebuilt it with the skin from my inner wrist it's the thinnest skin in the body - and adapts well as a new tongue. I have a lisp because the my old tongue has to work double time to move the other half, and I do put it through its paces. smile I only lisp when I'm tired or it's swollen which happens sometimes. (I have no lymph nodes on my left hand side) I don't swell all the time but every once in a while something will set it off.

The woman isn't on this site, she's actually on a Facebook group. If you friend me on Facebook I can add you to the group. She's at md Anderson.

What they described to you interns of surgery sounds okay. They may not be taking a lot... Also sme drs are now retaking the skin under the chin (if you have any hanging there) however if you have Avila hair there I would suggest the wrist. smile take care.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Posts: 61
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Below are links to some information that may be of interest. The first part (John’s Story-a Video) relates to the method used by Sloan Kettering for delivery of radiation as explained by Dr. Nancy Lee a Radiation Oncologist. What I found most interesting was how they watch the tumor dissolve and fine tune the treatment on a weekly basis and by the end of treatment they can see that the tumor has disappeared. If everyone does not deliver radiation this way I would question why not.

http://www.mskcc.org/cancer-care/doctor/nancy-lee

After the John’s Story video if you scroll down to Related Multimedia (heading on the left) you can see a second part. The second part is a rather lengthy progressive panel discussion where Dr. Nancy Lee, Dr Shaw (Chief of Head and Neck Services) and Dr Disa (all of Sloan Kettering) discuss a multitude of things, including Cyberknife, related to head and neck cancer. If you start with “Introduction to Head and Neck Cancer” the video clips may flow automatically from one clip into the next but automatic may not happen and you will have to manually start each clip.

Can see the same and more here:

http://www.youtube.com/user/mskcc


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Mar 2008
Posts: 3,082
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Just in case new members get too excited about these videos, here's some comments:
First, that John's video describes standard procedure almost everywhere as part of plain vanilla IMRT. So no one suddenly needs to panic or worry that they were not treated this way. It's just so basic that most radiologists don't even explain it to patients anymore than they explain the differences between IMRT, Cyberknife, or Proton Therapy.
Second, Dr. Lee's opinion on the group video that she can do everything with IMRT that can be done with Cyberknife is somewhat misleading in that it is only true for first time radiation. In fairness to her, she did not claim she could do a second or third round of radiation with IMRT but she did overstate it since she did not put in any qualifiers.
Bear in mind that her NYC site of MSK does not have the machines to do Cyberknife nor proton radiation. I believe if Dr. Lee were asked, she would agree with my assessment.
Third: I do like how feisty she is, denouncing proton radiation as just "big hype" as well as sharing what both Kelly211 and I have been told, that for head and neck cancers, proton therapy may not be as good and that IMRT is actually better. Although that was somewhat undercut by her follow up that her NYC site is ordering a proton machine.(shades of Star Trek: Photon torpedos)
Fourth, I liked her explanation that IMRT and Cyberknife both use photons as the source energy, the difference is between how they are delivered. I would have liked a little more about how IMRT has to use multiple beams while Cyberknife rotates and can use a single more focused beam than IMRT. She did acknowledge that Cyberknife was like a top of the line fancy luxury car while IMRT is the standard car but the differences are more significant than that..
Otherwise, the videos are nice, but no new information that hasn't already been discussed here.
Charm

Last edited by Charm2017; 09-11-2012 04:35 PM. Reason: added star trek to lighten up

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Nocam, thank you for sharing the videos.

Charm, as always, I appreciate your tendency to stand back an give a more scientific method way of analyzing the data in studies and things such as this. It's the smart way to do things. You certainly have had the experience and do your homework when it comes to different scientific studies. You remind me a lot of my husband, Dan, who has a BA in physics and an MA in astronomy. He is currently reading "The Emperor of All Maladies" by Siddhartha Mukherjee. He's learning a lot about the history of cancer and how treatment and research has changed throughout time.


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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Kerri

Thanks for those kind words. That is a good book about cancer.
Guess it shows that I had been a medical malpractice attorney demolishing doctors in depositions to the point where they'd settle. But just like criminal defense law, it was too depressing for me, plus I hated the firms making me ask clients: How much justice can you afford? That's why I switched to government enforcement.

Nocam

Yes, excuse my manners in not thanking you for posting those videos. Like they say: It's me, not you. From the enthusiastic tone of your post I was overexpecting some new technique. Shame on me for not taking it in the context of a Public Relations video on MSK's website instead of an oncological breakthru. Still, I felt it important to make clear to the OCF readers that checking the tumor size during radiation and adjusting the field is standard IMRT and not exceptional, even though not always explained. I of course demanded each week to see the scans and get a summary of the tumor size and effect of radiation which my doctors were glad to provide although they did mention that most patients don't want that level of detail . Goes back to my malpractice days.
Charm

Last edited by Charm2017; 09-11-2012 04:32 PM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Sep 2009
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I thought I would throw my two cents in here.

Cyberknife delivers less radiation in bigger bites over fewer sessions. For example; my IMRT delivered 70 gy. of radiation over 33 sessions (2.12 gy. per session) whereas my Cyberknife treatment was 50 gy. over 5 sessions (10 gy. per session).

Interestingly, the Dr. sitting next to Dr. Lee is Dr. Jatin Shaw who was the doctor I saw at Sloan. Dr. Shaw was the last Dr. I saw during my tour of second opinions after the IMRT treatments at U of M failed in getting all the cancer from my recurrence.

Dr. Shaw recommended I get the Cyberknife treatment at UPMC. I must assume that he felt since the surgical solution was off the table and I had already received two sessions of IMRT at 70 gy. each, the cyberknife would exposes me to the least amount of additional radiation.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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Cheryld

Do you have any problem with aspiration or does everything work as it did before you had a partial tongue replacement with a flap? I keep hearing about aspiration being a probable problem and how dangerous it can be. Thanks for the offer about Facebook but that is something I have not anchored into yet.

Charm

You are very knowledgeable about so many details related to cancer and I thank you for explaining some things I know so little about. Are you familiar with the procedure of stretching and rotating the tongue to replace the portion of the tongue that has been removed? I always hear about the flap approach but, as a layman, it seemed stretch and rotate would be much better. Do you have a flap?

Dr Lee’s explanation captured my attention for I had never heard anything about procedures explained before. I can only relate to my own experience and I hoped all the best, very focused, steps were followed for me. It was my understanding that someone was going to show me what was on my Petscan etc. and show me, in general, what was going to be done. I was told nothing, even though I asked at one point. I meet for mask making and when I went in the next time radiation began. About mid-treatment I ask if they could tell what was happening with the tumor and was told nothing was know yet. Near completion of treatment I ask again and was told nothing would be know until a Petscan could be done a few months later after the area had time to do some healing. About 2 months later a Petscan was done and all was negative at that point but things had changed 5 months later.





2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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nocam -
IGRT (Image Guided Radio Therapy) uses CT or other imaging to help direct the daily radiation to where the tumor IS now, not where it was. Not everyone has that - they did not have one where my husband was treated, so the doctors physically palpated his lymph node as a way of telling how the treatment was progressing.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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That was how they judged Kevin's too. He had many lymph nodes that were swollen. Only 1 was tested, the assumption being more were involved. A week after the first chemo round with all 3 chemo meds the MO felt his neck and was amazed at how much the nodes had gone down. By the time they did the second round of same meds the nodes could not be felt anymore, anywhere. That was what encouraged us.
Nocam...I'm sorry you have not had a more positive experience. Not that there's much to be positive about, but the hope is that the docs would make it as clear as possible. Ours were amazing. We were told what was happening every step of the way. Of course doing the IMRT there was really no way of knowing how it was working, that is true. It is normal to wait until months later. Did they do chemo on you first, or with the IMRT?
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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[quote=KP5]That was how they judged Kevin's too. He had many lymph nodes that were swollen. Only 1 was tested, the assumption being more were involved. A week after the first chemo round with all 3 chemo meds the MO felt his neck and was amazed at how much the nodes had gone down. By the time they did the second round of same meds the nodes could not be felt anymore, anywhere. That was what encouraged us.
Nocam...I'm sorry you have not had a more positive experience. Not that there's much to be positive about, but the hope is that the docs would make it as clear as possible. Ours were amazing. We were told what was happening every step of the way. Of course doing the IMRT there was really no way of knowing how it was working, that is true. It is normal to wait until months later. Did they do chemo on you first, or with the IMRT?
Kathy [/quote]

Thank very much for your comment. It help me to think about for my ideals.

Tks again and pls keep posting.

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Nocam

Hmmn, sounds like maybe you did not have IMRT at all. Dr. Lee's video only applies to IMRT or 3Dconformal radiation. I note your signature line specifically uses XRT. That is an abbreviation for X ray radiation although some use it for external radiation but it's a catch all phrase. The acronyms are bewildering: 2DXRT, 3DCRT, IMRT, SBRT. So it sounds like you may have gotten one of the less advanced radiation TX, especially if they could not keep you appraised of tumor shrinkage.

This stuff is so technical that it's hard to explain in plain English to anyone without gross simplification. It took me a lot of research and reading of the articles and even then I need to bring in articles and ask my doctors what the heck they mean. A very good example is your repeated questions about rotating the tongue instead of a free flap. I was just as confused as you are now about this. Luckily for me, my plastic surgeon, Dr. Davidson is one of the pioneers of the tongue rotation technique and an acknowledged expert in functional reconstruction of the oral cavity.
Here is a link to one of his articles back in 2008 which explains the tongue rotation and even has the pictures that your doctor tried to sketch out for you.
Tongue rotation
I was so excited when I read this but in talking to Dr. Davidson, he explained that even though he uses tongue rotation, he also uses the flap. As the title of the article implies, rotation of the residual tongue is a "modification" of the flap surgery. It does not eliminate the need for a flap, but it's a different way of putting the tongue back together with the flap. So really it's not a question of choosing one or the other. Depending on the tumor, there is no way to avoid a flap in hemiglossectemoy reconstruction. So even though Dr. Davidson did rotate my tongue, he also put in a free flap from my wrist.

I note that you started posting here in July and still have not decided on TX. While I appreciate that you do not want complications or side effects or quality of life changes ins speech or swallowing, it's sort of a package deal with recurrence TX. If there is a way to avoid all these downsides, neither I nor any of my top notch doctors know about them. You learn to adjust to the new normal.

Charm

Last edited by Charm2017; 09-13-2012 06:09 AM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jul 2012
Posts: 61
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KPS

I had 3 sessions of chemo in conjunction with radiation. One session at the beginning, one midway and the last near or at the end.

Charm

Thanks for including the pdf link about tongue rotation for it was very informative. I guess there are lots of ways to do somewhat similar things. I spoke with the Doctor today about tongue rotation before reading your post. I ask him if tongue rotation was a new technique taking the place of flaps. He said tongue rotation was not new and that, as I understood it, he holds the flap approach in reserve and he may or may not use a flap in conjunction with tongue rotation.


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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[quote=chu082011]

Thank very much for your comment. It help me to think about for my ideals.

Tks again and pls keep posting.
[/quote]


Last edited by ChristineB; 09-14-2012 06:46 PM. Reason: removed link
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As a result of following many post by Kelly I have contacted UPMC and have been accepted to be part of a clinical study that involves Cyberknife and Erbitux. I should be going there very soon and will be there for 3-4 weeks.

If anyone looked at the video links I posted and watched the one that features Dr Lee (of Memorial Sloan Kettering)it can be seen how they prepair for and deliver radiation. Sloan Kettering does not use the Cyberknife method but their highly concentrated focused delivery (as pointed out in the video) seems very similar to the Cyberknife approach. I am curious as to what others think about and/or have experienced (pros and cons)with such treatment. I am going there to treat a recurrence which was treated with radiation about eleven (11) months ago.

Also interested in learning more about what to expect regarding Erbitux. I understand that the side effects are minimal compaired to Cisplatin which I had the normal and extreme difficulties with relevant to nausea and regugitating. So far I understand that Erbitux may cause a temporary rash.

Last edited by nocam; 09-23-2012 10:20 PM.

2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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Nocam

Yes, the marketing departments of the hospitals do their best to confuse the patients over what they really offer and how it compares to other hospitals. The actual doctors don't usually have veto power over marketing ideas (which is why you see Reiki offered in otherwise reputable hospitals). But facts are facts.
There is a factual difference between the IMRT in the videos you posted and stereotactic radiation (SRS or SBRT) but it does not usually matter except for getting radiation a second (or third time) with a recurrence. I discussed this about Dr. Lee's oversimplification in her video. Maybe you are getting SRS/SBRT under a different brand name but no amount of careful IMRT can do what SRS/SBRT can do. That's why Kelly and I had Cyberknife. Here's a primer:
[quote]Other Names for Stereotactic Radiation

There is sometimes confusion about the branding of equipment separate from the terminology of SRS or SBRT. Stereotactic radiation may be delivered by a number of different devices; brand name stereotactic treatment machines you may hear mentioned include: Axesse, CyberKnife, Gamma Knife, Novalis, Primatom, Synergy, X-Knife, TomoTherapy or Trilogy. It is important not to confuse these brand names with the actual type of stereotactic radiation under consideration.
How Are These Treatments Alike?

Use multiple narrow radiation beams.
Target small, well-defined areas with precision.
Use immobilization devices or techniques that limit monitor and adjust for any movement during treatment.
Give high doses of radiation safely and accurately over just a few treatments (usually one to five sessions overall).
[/quote]

Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Nocam

I'm answering the Erbitux portion of your post separately from the radiation question. Why? Because the radiation questions have universally accepted factual answers, documented by clinical trials and the laws of physics. But Erbitux is still open to discussion.
Reasonable people can and do disagree on the meaning of the studies done so far on Erbitux. Unquestionably, both the Bonner and the Extreme trials indicate that Erbitux is an effective treatment. Yet it's not clear that it is as good or better than the old platinum drugs. That is why there is a clinical trial being done. It's noble of you to be part of this trial. I am biased against Erbitux since they now know that it does not work at all for up to 5% of oral cancer patients and 40% of colorectal cancer patients but they did not know that back in 2007 when I had it.
Others here did have good experiences with Erbitux , so I'm pretty much the only voice of caution here. it sucks to be the 5% but the odds are with you on Erbitux.
Charm

Last edited by Charm2017; 09-24-2012 07:59 AM. Reason: toned it down

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jul 2012
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I saw Dr. Lee's videos. I wanted a consultation with her, but would not see me. Charm summed it up about SBRT. Did anyone mention laser surgery, was possible? That I heard laser surgery leaves more options open in the future, like Reirridation, surgery, if needed. Good luck with everything.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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PaulB

Sorry it took so long to get back to you. Since you were not permitted to see Dr. Lee did you see someone else at Sloan Kettering? No one has mentioned laser surgery. Is that something similar to Cyberknife and such or completely differant?


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Jul 2012
Posts: 61
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Charm

I have checked further and I was treated using IMRT. My only question now is whether or not it was done in the best way possible. I have heard that at some hospitals that do not specialize in certain cancers the treatment with physisist and all may not be as good. In the video link I previously posted (included below-Johns Story) from Sloan Kettering the doctor states (about 3/4's through the video) "Whats so satisfying to me during treatment we can see the tumor shrinking and by the end of treatment practically all patients we will see him or her having a complete response meaning no evidence of any tumor at the end of treatment". That statements seems very clear and not what I was told. As I mentioned, in a previous post, I was told at midpoint and near the end that nothing could be seen or determined for a few months after treatment was finished.



2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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Nocam

As I mentioned in your threads and many others, the marketing departments of the hospitals are running the show. One reason I critiqued those video links you posted was that they overstated the ability of IMRT plus they made it seem like the extra scans and xrays to independently track the tumor size were just everyday normal way of doing business.
As you have discovered, it's just not so. But I don't think it makes a difference in the end result. Even if they "see" the tumor shrinking to the point of "complete response", that is not proof the cancer is really gone. The marketing departments and the complicit doctors play games by using complete response in two different ways: There is clinical complete response (CCR), which means looks good and there is pathological complete response (PCR)which means the cancer isn't there. It does takes months to know if there is a CCR and only time can tell if there was a PCR. I've been told I've had a CCR twice now. It's meaningless so don't worry about it.
Charm

Last edited by Charm2017; 10-16-2012 07:12 AM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jul 2012
Posts: 61
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Charm

As always, thanks for the feedback. It is really disturbing that marketing comes into play with cancer treatment. I can understand and accept marketing, to a point, with soap but not with cancer.

I would now just like to know if attention to detail was given to me in the same way that Dr. Lee has stated to be the case at Sloan Ketteting for the same. I suppose there is no way I can or will ever know. If I found the same attention was not given I would be very upset. However, I assume it no longer matters for what was done is done.


I see the link I mentioned was "BELOW"in my last post did not make it. If some one wants to see the video about Dr. Lee they can go back to, I believe, page 6 or I will gladly repost it here.




2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Jul 2012
Posts: 61
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Charm

I would like to pass this past you to see what thoughts you might have. I have read that you have had radiation treatments (including Cyberknife)more than once.

I am at UPMC, you may have read that elsewhere, and came here for a clinical trial involving Cyberknife treatment with Erbitux which would be covered Medicare. Now that I am here I have been informed that I qualify for treatment but Medicare does not cover the treatment using Erbitux. Late today, before making arrangements to return to Atlanta, I was told that another trial (the same but without the use of Erbitux) could be done and would be covered by Mediaare. I am wondering what your thoughts are in regards to having Cyberknife radition treatment for base of tongue cancer with or without Erbitux. I guess having more radiation is one thing to consider but I was told that there could be damage to my lower jaw bone but it is not likely.

Thoughts from anyone will be helpful.



2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Jul 2012
Posts: 61
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Charm

I understand you are in recovery and I hope your recovery is going well. When you are up to it and if you have any thoughts about it all I would like to add this. I have been told I can have the clinical trial without the Erbiyux but as soon as radiation is finiished and I get back to Atlanta I could have the Erbitux there. If I was having the Erbitux as a part of a clinical trial it was to be delivered intermittenly. I was told that having the Eubitux done some days later could still offer some benefits for it would still interact with the radiation which will be actively working for some time after receiving radiation.

It seems to me that having a clinical trial without Erbitux and receiving the Erbitux some days later by someone else defeats the purpose of the clinical trial. I am suppose to start radiation treatment tommorrow.

Thoughts from anyone will be helpful.


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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Nocam

My opinion (I am not a medical doctor and so my opinion is not to be mistaken for medical advice) is that Erbitux as a single agent chemotherapy for HPV+ patients, it is not effective. Based on conversations with my MO who had first adminstered Erbitux to me and the fact that he will no longer prescribe or administer Erbitux as a single agent chemo due to his patients getting recurrences, my bias against it is even stronger than ever. So I personally would not get Erbitux ever no matter what but ask for carboplatin. The radiation with CyberKnife alone sounds very good especially since Medicare covers it. I am on Medicare now for this second round of CyberKnife and it is my understanding the Medicare will pay for both the CyberKnife as well as the Carboplatin chemotherapy. After all, there is no question that the platinum based chemos work.
In your other post, you mention the dangers of re radiation, and in light of the fact that you feel that in the past you did not get state of the art treatment, I should caution you that in my case, (as I posted under the Third times the Charm thread), a whole team of radiologists and physicists spent two weeks plotting out my radiation field and dosages after overlaying the fields of the prior two radiations (the first Cyberknife TX and the 40 IMRT TX) so that they could do as little damage as possible and reduce the risk of necrosis.
I got that explanation only when I questioned the amazing amount of bills sent to my insurance company.
But then this was a third round of radiation and this would be "only' your second.
Ask them how many GY dosage each session and did they overlay the previous IMRT radiation fields you had to miniminze damage. So much depends on our doctors.
I hope this works out for you
Charm

Last edited by Charm2017; 10-19-2012 08:33 AM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Hi, I just felt the need to tell you this. My father had throat cancer and received Erbitux when he could not tolerate cisplatin. He had an allergic reaction and died within minutes of receiving it. Recent studies indicate that tick bites cause a reaction when given Erbitux (studies have shown the southeast region of the US has 20% to 25% risk of an allergic reaction compared to the overall risk of 3%). He lived in GA his whole life and had many tick/chigger bites. I am posting on my mother's account. Thanks

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John's wife and Charm

That is really frightening information about the Erbitux. I wonder if I should refuse for it to be used on me.

Charm

I saw you mentioned that you were being given Carboplatin this time and it sounds like there was nausea. Was the nausea worse than with Erbitux? I wonder if I should ask for Carbonplatin instead of Erbitux. Whatever I am given will be given in Atlanta when I return and not given in Pittsburgh.

Are you definitely having Cyberknife? I thought I was having Cyberknife but when I noticed that the equipment looked different than what I had found by Googling I ask about it. I was told that I was being treated with a linear accelerator. Upon further inquiry I was told it is IMRS which does what Cyberknife does and more. Are you familiar with the IMRS approach?

I have not ask about the Gy's but will try to ask today.


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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Nocam,

All of the current radiation delivery platforms being used now use a linier accelerator to generate the radiation beam. It is how that beam is delivered that is different (not sure about proton beam though).

The operative word in your treatment is "Stereotactic radiosurgery" which is what you are getting. This is where you get a very precise blast of radiation (up to 10gy) in a continuous beam each session. The machines used to deliver this type of treatment have different brand names given to them by their manufacturers; Cyberknife is one of those brand names.

If you notice during treatment your machine gives you a constant hum whereas the IMRT goes on and off. Here is a link to the page that explains it at UPMC;

http://www.upmccancercenter.com/radonc/radiosurgery.cfm

If you have seen my posts you may know that I am always more interested in the radiation I am getting and on what platform than the chemo side. Chemo is only a small part of the treatment and the radiation caries the biggest load. So my opinion would be to use the platinum based chemo’s if you are unsure about the Erbitux. The Erbitux did not bother me and they were fairly happy with my results, but then again I have no idea what made the most difference, radiation or chemo.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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Thanks Kelly!

I just returned from my 3rd of 5 treatments. I ask and was told I am receiving 8.8 Gy per session. I ask if they did an overlay of the IMRT etc. nd was told they did not. The only thing used was the current Pet/CT for determining the treatment.


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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If you want to be aggressive, use the Carbo! I (personal opinion mind you), would not risk only doing Erbitux because you might be nauseous. They have meds for that. You have to hit it with your best shot!!!
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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I am back in Georgia now and waiting for Chemo to begin. I guess I will go with Erbitux and hope for the best. Not sure yet how often I will be given this stuff but will report back when I learn more.

As I understand it the unit that was used to give me the radiation is called TRILOGY and does more and better than a Cyberknife unit. I was told this unit as well does not permit seeing what is taking place with the tumor during treatment and a patient must wait 6-8 weeks for a pet scan before knowing more.

Since returning home last Monday I am experiencing a lot of bleeding. During the day it seems mild but at night it gets heavy. I assumed it was because I hack a lot trying to clear my throat but now I am not so sure because I am trying to keep hackingto a minimum. Does anyone else have this kind of problem from radiation? Tonight I am goingto try a humidfier and see if that helps anything for dry mouth is a more serious problem at night.


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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Make sure you discuss the bleeding with your doctor. A little bleeding can be normal but this doesnt sound right. Not every day, a couple times per day.

A PET scan should not be done until 3 months post radiation. PET scans are known for false positives. Having one only 6-8 wks after finishing it has a very high chance of showing inflammation which will appear as 'activity' and would be interpreted as a positive scan.

I have not heard of TRILOGY before. Was this done at a major cancer center? Is this something new? Are there studies attesting to this being better than cyberknife or was this someone's opinion?


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jul 2012
Posts: 61
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ChristineB

Thanks for responding! The treatment was doneat UPMC and what little I initially understood about the TRILOGY System was explained to me by Dr. Heron at UPMC. Below is a link to more info about the system and its use at UPMC. I have heard mention of Cyberknife often but I was almost certain something differant was being used on me because it did not look like a Cyberknife unit I was seeing from a Google so I ask. I have seen mention Cyberknife a number of times and wonder if he is familiar with this system.

I am very concerned about the bleeding. I have mentioned it to the RO locally but so far she does not seem to concerned.


http://www.upmccancercenter.com/radonc/trilogy.cfm

Last edited by nocam; 11-06-2012 01:10 AM.

2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Dec 2010
Posts: 5,260
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Make them aware of HOW MUCH blood you are losing this is very important as it can cause a whole host of problems.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Posts: 61
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Hello Kelly,

I hope this post finds you experienceing results that continue to bepositive. Soon, I believe you will be receiving another PET scan and if it is like the last then that will be terrific.

Thanks for mentioning that Dr. Heron and OR past along their hellos. I meet with Dr. Heron a number and Dr. OR, and his beautiful assistant) onlt once.

Thanks also for the information above. Do you know what kind of unit was used for your treatment? Initially I thought I would be treated usinga Cyber Knife and each treatment would be about 30 min.Instead I was treated with a unit called "Trilogy" and each treatment only lasted +-5 min.

I have completed the Erbutux part of treatment here in Atlanta a last week I had a first PET scan since treatment. This week I will find out what the results are. I am hoping for the best but fearful that all will not be as I wish. I will be posting the info I receive shortly.

Take care,
nocam





2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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Best wishes, Nocam, on your PET scan results. I hope they are all you hope them to be!

xoxo,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Sep 2009
Posts: 618
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Hey Nocam,

Good to see you post. I did get a PET at 10 months post treatment a month ago and it was clear so I was happy with that. next scan scheduled for March 5th.

I see you are worried about scan results, well can't help you there as we all hate the wait for results and fear a bad one. I am hoping yours are as good as mine have been.

Keep in mind that Cyberknife is just a brand name for a type of machine that was one of the first to deliver stereostatic (sp) radiation. This is the type of radiation you recieved just with a different machine (trilogy). This is the same machine they used on me and the same type of treatment that Charm just completed.

Charms results are due in this week also and I am hoping we hit three for three on our scans for this type of treatment. Please let us know what your results are.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Jul 2012
Posts: 61
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Kelly

I to look forward to a very positive outcome for Charm this week.

Kerri

Thanks for responding with you kind thoughts

Last edited by nocam; 01-15-2013 10:36 AM.

2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Jul 2012
Posts: 61
nocam Offline OP
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I posted this elsewhere but I think this is a much better location.

braziliangirl

In a post somewhere, can't find it, I ask what "positive closure" meant and you responded with an answer. It turns out that your explanation was what I thought it was and recently heard about. Previously I had only heard about "flaps" (use of skin from another part of the body)to fill in the portion of the tongue removed. Did your Doctor ever propose using a flap instead of positive closure. If so, why was positive closure used instead of a flap. It seems to me, someone that knows nothing about it, that positive closure would be better. What do you think.? Do you have an problem with "aspiration" (I believe that is the word) where fluids etc. can go to the lungs (very dangerious)instead of the stomach? I have just completed a second rad and chemo treatment for a recurrence. If it did not work, I am afraid it may not, then surgery will probably be necessary. I will know some results this week so I am starting to think about what options I may have.

Thanks for any time you have for explanation.

Last edited by nocam; 01-15-2013 09:50 AM.

2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Jul 2012
Posts: 61
nocam Offline OP
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I have my PET scan results back (shown below) and unfortunately, to my surprise, it seems my trip and additional radiation treatment at Univ. of Pitt Medical Center and Urbitux given in Atlanta accomplished nothing. The only good news was that the tumor is still localized and no lymph nodes or spreading of cancer cells is apparent. If anyone has any suggestions or thoughts too offer I look forward to hearing them.

“There is a large area of increased FDG activity in the right side of the base of the tongue in the same area as was previously seen on the PET CT scan of 6/11/2012. This area is larger than the previous study and on the PET scan measures 2.9 x 2.5 versus 2.5 x 2.3 cm previously. The tumor appears to have crossed the midline slightly to the left side.

No other area of abnormal FDG activity seen in the neck and the CT component is also unremarkable. Patient’s head is rotated to the left side resulting in unusual appearance of the tongue and soft tissue of the neck”.

Other things were stated but it seems that which is shown above was of greatest importance. I am shocked that radiation is not killing this ball of cancer cells. It seems to me that this second round of very focused radiation would have accomplished something. The radiation oncologist ask if I would like for her to look at some other possibilities besides surgery and I told her yes. One thing she is going to look into is a clinical trial somewhere. I tried that once but got lost in all the verbiage.

Tomorrow I meet with the ENT I have been working with.






2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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Nocam,

I just read your post and feel like I got a swift kick in the stomach. I am surprised to see the tumor had no reaction to the radiation. This treatment involves fairly high doses of radiation so you would think the tumor would have diminished in size if only slightly. In your case it actually increased slightly.

I know that it is cold comfort knowing that surgery is still an option and that you are in no worse a situation than you were in when you started this. It looks like your tumor is completely resistant to radiation treatment. I have heard of this but have never run into it on this board. If someone else has some experience with this please chime in.

The good news is that the cancer has remained localized and there is no metastasis to other locations or lymph nodes (again, cold comfort).

I feel bad as I was the one who recommended you give this a shot. I don’t know what to say about that other than I am sorry if I have caused you any undo pain or discomfort.

I’m still pulling for you. Please keep us informed about what the doctors are saying they want to do next.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Mar 2011
Posts: 1,024
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Hi Nocam,
I'm sorry to hear that your tumour has not responded to the radiation.
Please don't discount salvage surgery to treat this.
Kris required salvage surgery when his BOT tumour reoccurred 10 months post chemo and rads.
The tumour board told us that as chemo and radiation had not worked why would we try it again. Their recommendation was for surgery. This was the only option that offered us a chance of a cure.
Would a clinical trial be a curative option??
Please don't waste time . As of now your tumour has not metastasised. Proceed with whatever you do decide ASAP.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Mar 2008
Posts: 3,082
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Nocam

Oh No. A bad scan result is a real life nightmare. As Kelly noted, no tumor shrinkage is highly unusual but the term radiation resistant is exactly the explanation I got from my CC when I asked how in the world could my tumor come back in the same spot within a year. But then, back in July when you started this thread, your doctors thought that surgery was the way to go rather than more radiation and you even had it scheduled. Based on what happened to me, I understand why you wanted to try radiation instead one more time.

I agree with Tammy that now salvage surgery should be considered. Yes there are consequences, but if I had not had the surgery early in 2009, I'd be dead by now. It did the trick on getting rid of that radiation resistant tumor. This most recent cancer is "new" and in a different location than the original tumor.

I'm sorry this has happened to you. Your posts have helped make clear some of the problems with marketing by hospitals as well as the false hopes raised by newspaper stories that everyone can be treated with robotic surgery. I was crushed also when rejected for TORS and had to go the split open the jaw and scalpel it out routine of salvage surgery. I was really hoping for a good PET result for you. I was remiss in not thanking you for your well wishes on my MRI.
So consider the surgery now as that has the potential to cure this.
Hang in there.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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It appears you have a very resistant tumor. Surgery is a good option and they may want to follow it up with more radiation. You should request to have tissue from the area biospied and then tested against different chemos as this is a very effective way of finding out what treatment works best for you. It is good it hasn't spread. But hopefully surgery will take care of most of it. ASAP is the primary term here push to have it taken care of NOW. hugs and best of luck.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Sorry for the news. Chemo and radiation resistance is thought to be caused by many factors like field cancerization, cancer repolulation, angiogeneses, anemia, hypoxia, drug resistance, genes, and is a concern with my recurrences, which prior treatments were ineffective. I don't know what clinical trial they are speaking of, but maybe should be different that what was already given, and more of a targeted therapy. I had HD-IORT, high dose rate Intraoperative radiation therapy, which is similar to Brachytherapy, and can be used for recurrences in previously irridated tissue in the oropharynx, mouth, elsewhere, and radiation, after resection, possibly flap, is radiation directly on or in the tumor, in addition too, additional EBRT after surgery, with a targeted drug, in my case, and or chemo. This is an aggressive treatment, and done only in a few places. There are chemo or targeted therapies that are injected directly into the tumor during surgety, but I did not have this done. Good luck with everything.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Nocam,
I am deeply sorry for you and the news that you received. It seems like there are a lot of veterans on this site that have some viable suggestions. I really don't know what else to say. I hope that you and your team can come up with a treatment plan that will save your life as you are willing to accept it as a new normal. I wouldn't want to have to make the decisions that you are facing. Just take some comfort in knowing that there are people here who have been there and done that...not a good choice, I know.

I am with you every step of the way, as I'm sure we all are.

Please try to do things that will help you relax and laugh a little as you wait for these plans and decisions to be made.

With great care,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Jun 2007
Posts: 10,502
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Im very very sorry to read the radiation did not help eliminate the cancer. This is indeed a very unusual situation. I would suggest to go to one of the countries top cancer centers. This would be the best chance for a successful treatment of this resistant cancer. At a major comprehensive cancer center they will have the countries top doctors who are the most experienced in difficult cases. They will use a team based approach to this. This may be your only option to being cured, please look into other centers if not for treatment then at least for a second opinion. The top 4 centers in the US are MD Anderson, Johns Hopkins, Sloan-Kettering and Moffitt (in no special order). Ive had recurrences myself and know how disheartening this news can be. You seem to be handling this very well and know the importance of selecting the proper treatment facility.

Wishing you all the very best with the difficult decisions you are facing.

Cancer Centers


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jul 2012
Posts: 61
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Kelly

You said:

"I feel bad as I was the one who recommended you give this a shot. I don’t know what to say about that other than I am sorry if I have caused you any undo pain or discomfort."

PLEASE don't feel bad for one moment! Finding OCF and you has been a gift that has given me knowledge, strength and courage I would have never had if not for you and this site. After reading about all your travels and what you have endured I became optomistic about what might be avaliable for me and I choose to follow in your path. Even though some of the best gave you little hope for the future you perservered and found hope and it is paying off. It seems as though, in a way, that what is happening for you is some kind of miracle and it is so encouraging to know that miracles can happen.

I never really understood your condition but it seemed much worse than my own so I felt confident that a cure for me would be quite simple. Unfortunately, so far, things have not worked out as I wished but I have not given up. I feel stronger because I know I at least tried and I have not given up trying just yet. I am lucky things have not gotten a lot worse and it seems I may have a LITTLE time to look at other options and I will. I am confident that there is a better option out there but I just don't know what it is or where to look. At the moment I am waiting for Dr. Heron to see the results in hopes of his having some positive suggestions. I received an email from him yesterday, at midnight, and at that point he had not received anything. I am also trying to find out where there might be a clearing house of positive clinical trials taking place, maybe such info is in a data base, that might pertain specifically to what my problem is.

PLEASE don't feel bad for one moment! The information you and others have given has all been helpful. 3 for 3 is not possible at the moment but 2 for 3 still is and that is real good.


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Mar 2011
Posts: 1,024
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Nocam,
Please consider salvage surgery. This has a curative intent.
Would a clinical trial offer you curative intent as a stand alone treatment? I doubt it.
There are a few of us on here who have had to go down the salvage surgery path. Did we want to ? Hell no. But Honestly there is still good quality of life to be had and it is far preferable to the other option.
Life can still be good.Don't discount it. Please consider it.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jul 2012
Posts: 3,267
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You can go NCI at cancer.gov and check thier database or clinical trials.gov. PubMed.health to check results from clinical trials, treatments. Go to various cancer center's web pages, and see what clinical trials are open, and what different treatment options they offer. Most clinical trials are for no prior treatments or other exclusions, but they do have for recurrent or metatastic head and neck cancer, oropharyngeal, solid tumors.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Nocam,

Thank you so much for the kind words. I think one of the great benefits of this site is the ability to talk with others who have been in our shoes. I very much remember getting the news you just received. Although my results showed the radiation to be partially successful I still had residual disease. In a word, I was "Crushed". But I found a way forward and am still here to talk about it. I am comforted in the knowledge that you still have a curative path open to you.

Best of Luck my friend.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Jul 2012
Posts: 61
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Tamvock

Thanks for your thoughts which parallel what my ENT doctor told me last week. I keep hoping for some last minute miracle to take place but I am convinced that is not going to happen, I am waiting for the Dr. at Univ. of Pitt to read the pet and give me his thoughts but have accepted the fact that he is going to suggest what others are saying which is get surgery. I am now hoping I can savemy tongue and larynx as I was told I could at Sloan in Sept (hope nothing has changed) instead of losing both as I was told should happen by a doctor here in Atlanta. At the moment my tongue is swellingand speech is becoming difficult, wonder if this is just temp from radiation, and I am requiring Rocsiset every 4-5 hours. Hate trying to sleep, not swallowing any liquids and fearful of aspiration.

How is your husband doing? How does he communicate?

If I have to be cut I am hoping I can have it done at Sloan for they are in the groupof best but not sureI can make it happen with my insu. I hate to deal with second best. I think I have already done some of that.

Charm

I guess I am special and the tumor just does not want to shrink and go away. I am waiting for you to be at least 2 out of 3 that Kelly referanced since I cannot join as 3 for 3. No need for Kelly to have all the fun. Join him with positive results.

CherylD

Interested idea to have the biopsy tested aginst different chemo. Maybe that is whay a local MO is looking into.I will try to ask when I see her next.

PaulB

That is a lot of good information. Whaere are those few places where the things you mentioned are done? What have you had done and how are you doing now? I have looked at NCI but I get lost in trying to understand all the treatments
terminology. Maybe I can find someone to help decipher it all.
Kerri

Thanks a lot again. Your words are very conforting.

ChristineB

Above I mentioned Sloan where I have been for a second opinion. I hope that can be the place where I can get the best.

Kelly

Dr. Heron is a moments hope. Maybe he can give me some direction soon. I hope it is soon for I need to make a quick decision.


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Jul 2012
Posts: 61
nocam Offline OP
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Has anyone here had "positive closure" done or know anything about it vs a flap beingdone? I posted directly to braziliangirl
on page 9 (she had this method) but she has not been around for a while to possibly answer.

This was proposed to me at Sloan Kettering as whatthey would do. Now that I know surgery is what is MOST likely to happen this appeals to me more than a flap.One major curiosity is speach recovery and aspiration possibilities being reduced.

Thanks


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Mar 2011
Posts: 1,024
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Hello Nocam, I am pleased that you have not completely discounted surgery. Of course, said surgery would depend entirely on where your cancer is and extends to.
Kris used the speakit app on his iPad for communication for the first 8 months postop.
He now has a TEP ( trains oesophageal puncture ) prosthesis. In essence this is a 1 way valve that sits between the trachea and the oesophagus. The user blocks the tracheal hole on the neck and breathes out through the valve and sound is made. This has made a huge difference. Of course, not having a tongue does make speech more difficult, but, I understand most of what he says. Most of the time his speech is relatively clear. Maybe the fact that I live with him enables me to understand better than others. But it's early days yet. Otherwise Kris is doing great. He goes to the gym 3 days a week, weight is stable, he swallows all his nutrition and he is taking over the yard chores again. ( though I do a neater job ) Life is good, different, but good.
Don't let the thought of this type of surgery not be an option if it will be a lifesaver.
I sincerely wish that you do quickly find the answers you are looking for, whatever that may be,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Mar 2011
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Nocam
Should you have your tongue removed they would use a flap. This is just to fill the space in your mouth where the tongue used to sit. It actually looks realistic.. Kris's flap was taken from his abdomen.
I have no idea what positive closure is.
Guess all depends on what type of surgery is proposed .
Thinking of you,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jul 2012
Posts: 3,267
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The two places that do IORT in NYC are Memorial Sloan Kettering, and Beth Israel. I went to Beth Israel since MSKCC would not meet with me...Top cancer centers choose you, you don't choose them, and can deny treating, meeting with you, actually any doctor can for that matter, and some don't like treating you when someone else did, so if any say sorry, we can't treat you, there are always others. Anyway, I was very happy with my doctor at BI who pioneered this procedure at MSKCC, top in the country, and headed their radiation program at MSKCC, and all the doctors in the H&N surgery team there are top doctors from MSKCC and MT. Sinai anyway. I also believe Stanford, MD Anderson, Mayo Clinic, USC, and may others now that a portable machine can be used. If they do IORT they most likely do Brachytherapy too, which is another option.

I heard of a similar Intraoperative treatment, done with Gamma Knife, called Intrabeam IORT, but most are for breast cancer I seen, but someone on another blog was getting it in Indiana for H&N cancer.

I'm fine, no real limitations, but this was done on my neck, with a pec flap, so is different than BOT, but they do that also with IORT, and Brachytherapy.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Sloan is a top cancer center - I would talk to them... Have you talked to md Anderson? They are apparently one of best places for H&N ca in the country. I live in Toronto and was treated at pmh - a world renowned facility - they train drs internationally. I was told that other than pmh - internationally speaking - medical students apply to md Anderson as they are also cutting edge. Best of luck.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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I like to go to US News also to see who the best hospitals are, and see where they rank in the nation, in each category. A place that's ranks high in cancer lets say, may not be as high in ENT, or other specialties, but if they are in the top 50 for any specialty out of 7000 hospitals, they are very good anyway, and especially those on the "Honor Roll" being in the top 50 for 16 or more specialties. Thankfully I live where I have many to choose from.

Surprisngly, MSKCC is number 2 for cancer, but ranks 39 now in ENT, and one of the reasons I went to Mt. Sinai originally in 2009, which is now #11 in ENT. Md Anderson is #1 in cancer and #5 in ENT. John Hopkins is #1 for ENT, but there are other factoirs to consider, but this is one listing, but an important one many go by, including the hospitals bragging rights.

Then again, I chose to go where a top doctor was I looked into for my last treatmant, even if it wwasnt a top ranked hospital.

http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat

http://health.usnews.com/best-hospitals/rankings/cancer


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Posts: 61
nocam Offline OP
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Tamvonk
In aday or so I am goingto tell a little more of what I know about "positive closure". I only call it that because that is what braziliangirl called it. Thre flap seems to be well known for many talk about it. But no one says anything about positive closure and I am surprised, I know Charm is famililiar with it for he posted a link to more information about it. Braziliangirl had this positive closure technique done and I hope she comes back to tellmore about it for it seems no one else has gone through this procedure.

Does your husband eat by mouth or tube?


PaulB

Thanks for the info about Sloan Kettering. I am surprised that they pick you instead of you picking them so I guess I am going to havew a problem. It seems surgery is my only option. I may not deserve it or maybe can't afford it butif it must be done then it is my preference to have it done by the best in the world. Since I couldn't even get an appointment at MD Anderson Sloan Kettering is my choice. If they are #39 in ENT thenI hope being #2 for cancer means #2 for tongue cancer also and ENT dosen't matter.

My ENT says protocal is the same everywhere as to suggest it does not matter where you go. I can't accept that. Protocalmight be the same but those performing protocal can't all be equally capable.









2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Jun 2007
Posts: 10,502
Likes: 1
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You are absolutely correct.... It really does make a big difference where you are treated. There have been studies to prove this. Any doctor who says it doesnt matter may not be up to date with their continuing education. They also may work at a smaller center where they feel they are just as good as the big guys.

Where you are treated impacts the outcome

Last edited by ChristineB; 01-28-2013 06:21 AM.

Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Posts: 1,024
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Hello Nocam,
Kris takes all his nutrition and all his medication by mouth.
He has not used his peg for nutrition since about 6 weeks postop.
However he only does liquids. The SLT says the fact that he can and does swallow pills means he can swallow solids, or at least thicker fluids. He just seems to have a mental block and won't even try.
He still has the PEG and is not yet ready for it to be removed. His reoccurrence was shortly after his first PEG was removed so again another mental thing.
What is the surgical option you are being offered.
Please don't take too much more time before proceeding.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jan 2013
Posts: 1,291
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FYI - If you want to read the actual study, here is a link. I've not read it yet but very interested to take a look at how they assembled the comparisons and if they did any control arm testing. It does not seem like that and I find 20% really a large difference. Down in there I suspect are places where they need to even things out.
Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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Nocam,

If you’re talking about surgery, Sloan is right up there with the best. My doctor at U of M referred me to Sloan as well as the doctors at MD Anderson if I was going to pursue a surgical solution. Both said Sloan was known for their surgical skills in H & N cancers.

I was told there was no surgical option for me by U of M but they did say that if there was a possibility, Sloan would be the place to find it. MD Anderson said the same thing. I did go to Sloan to find out and was told by them that even they would not try surgery thus my choice of Cyberknife.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Sep 2009
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Nocam,

I met at Sloan with Dr. Jatin Shah who is the head surgeon and is world renowned. I just called the number listed for him on their site and asked for a consultation with him and got it. He may be able to do surgery without doing as much damage as your doctors down south are looking at.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Jul 2012
Posts: 61
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ChristineB

Thanks for helping me to understand that all my thoughts are not completely obsurd. I was told this protocal thing by 2 differant doctors at the same institution. The first time I ask the doctor if protocal wqas the same then why did Michael Douglas go to Sloan when there are surely good folks in California.If I am told this again I am going to give the person that says it the link you gave me.

Tomvonk

I am trying to speed things up for the pain is a reminder. I wish everyone wanted to go as fast as I am ready for.

Kelly

As always, thanks a lot. You have further confirmed my feelings about Sloan. I just hope they will take me. If they don't I don't know where to go. I know where I do not want to go for I have already been there and did not like the folks or the plans.



2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Jul 2012
Posts: 61
nocam Offline OP
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OK, I am going to try to explain a little about what I think I understand regarding "Positive Closure" and include a little diagram I have drawn if I can upload it. Where are the people who must have had this procedure? Charm posted some info about this procedure but I can,t find it.

When I went to Emory Univ. They wanted to remove my tongue and voice box. As I later understood there was nothing wrong with the voice box but by removing both they could eliminate the problems I might have with aspiration. I am still looking forward to hearing about those here who have flaps and what problems they have with aspiration. Based upon Emorys plan I went to Sloan Kettering and Univ. of Pitt to look at options.

At Sloan there was no mention of removing my tongue or voice box and they said the voice box was fine. What they suggested was this "positive closure" approach with flap as a backup if needed. The Doctor drew me a little diagram. What they would do is cut out the tumor. They would then stretch and rotate the tongue to fill the cutout. The tongue would be shorter and speach problems would have to be overcome but there was no mention of aspiration problems. This procedure just sounds better to me.

If anyone can add more here that would be GREAT.

PS: Is there a way to add/upload a jpeg to a post? If there is I cannot find it.

Last edited by nocam; 01-30-2013 12:34 PM.

2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Apr 2003
Posts: 122
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There really is a great difference in different treatment centers. I started treatment at the (free) Grady system here in Atlanta, but after INTOLERABLE delays and indifferent doctors, I quickly switched to (still free w/Medicare) Emory University, where I watched them build the Winship Cancer Center-an incredible place. Many related services in one bldg really helps me and the staff is knowledgeable and extremely helpful. Cutting edge research helps, too.


SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!

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Posts: 61
nocam Offline OP
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Hello gpk`101

I see you are from Atlanta (like me) and went to Emory Univ. Who did you work with there?

PaulB posted a couple of excellent links which mean a lot to me and I prefer to think they very clearly identify those location that are most capable of providing the best service possible.


http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat

http://health.usnews.com/best-hospitals/rankings/cancer

A couple of observations:

ENT
#4-UPMC
#39-Sloan Kettering
Emory Univ. Not listed in the top 50

CANCER
#2-Sloan Kettering
#28-UPMC
#39-Emory

These list also support my personal belief that protocol is not the same everywhere. Otherwise, seems to me, everyone would generally score #1 in their particular area of concentration. I am new to cancer but if I could start over, or advise someone, I would do/advise differently. I wish I woulod have been directed to Emory Univ., to start with, for a first opinion and I would have then gotten a second opinion elsewhere. I did not know Emory (and who could be better locally) was an option at the time so I went where I was sent. If I would have known and could go back further I would not have done what probably caused me to get this cancer but-tolate now. I am just trying to get it right now but no success so far.

You being from Atlanta means you know some of the locals. Emory you know because you have been there. Piedmont, never seen a TV AD, but they have a good reputation for some things and they do cancer stuff. Northside Hosp. Does TV Ads for cervical and breast cancer but I know a guy, you probably know his name, who lives near there that could go anywhere in the world but they choose Emory. There is some new group, build a new bldg, that recently made Atlanta a base but I can’t remember their name. Its something like ……. Cancer Center. Then you have Dekalb Medical Center in Dekalb County. Who the heck is Dekalb Medical Center. I know who they are but until the TV Ads with 2, 11 and 14 year testimonials I did not know they did cancer (don’t say what kind-maybe all) and why. Are they trying to take business away from Emory Univ.?

TO MANY CHOICES AND IF YOU MAKE THE WRONG CHOICE…………………..SOONER.




2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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