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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 Michaelís 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.

Thatís 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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Posts: 945
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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.
Joined: Sep 2006
Posts: 8,311
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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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"OCF Canuck"
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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
Joined: Jan 2006
Posts: 43
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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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Posts: 3,082
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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
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