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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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nocam Offline OP
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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
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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
"OCF Kiwi Down Under"
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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!
Joined: Jul 2012
Posts: 61
nocam Offline OP
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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
Joined: Dec 2010
Posts: 5,260
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Posts: 5,260
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
Joined: Jan 2006
Posts: 755
"Above & Beyond" Member (500+ posts)
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Posts: 755
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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