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#177910 03-04-2014 12:02 PM
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Hello and i need some advice. 3 weeks ago I had surgery to remove a tumor on my tongue due to the HPV virus and i also had one Lymph Node remove from my neck. My surgeon, stated that my operation was perfect and his quest to find positive margins around the areas of operation was all negative. With that he said that if i was at a more cancer progressive hospital " they would say no radiation is needed". Two weeks later my case was presented to the Tumor review board and now they are asking me to consult with a radiation doctor because my Lymph Node had cancer. What should i do? Also my surgeon also said that if i take radiation that i will have a 10% chance of this coming back to me, but if i don't it would be a 16% chance. i really don't wish to experience the terrible side affects with the RT sessions. i need to swallow and speak and on top of this i accepted an offer for another job and this may prevent me from making this change. i am worried but feel pretty good after three weeks since my operation.

Can anyone offer any suggestions? Thanks Bruce


Bruce
BJT #177914 03-04-2014 03:18 PM
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I would go for a second opinion, preferable at a CCC. There are a wide variety of factors that may determine the likelihood of a recurrence - tumor size, smoking history, genetic tumor characteristics to name a few. Another set of professional eyes on your case would be worth it. You don't want to be doing the cancer dance a second time.
Maria

Last edited by Maria; 03-04-2014 04:43 PM.

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.
BJT #177915 03-04-2014 03:41 PM
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Hi, Get to a CCC and get a 2nd opinion, you must do everything possible to kill this beast once and for all, no one needs a reaccurance of this!! Do all you can to win this war!!! Here in New England I saw a whole Team of Cancer Spealists before any course of action was taken. I am now working on 7 years free!! Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
BJT #177919 03-04-2014 05:19 PM
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I would definitely get a second opinion and personally because you had a node involved I would agree. Rads and chemo would be the best option. Are you sure you were HPV positive? Usually oral tongue cancer is not HPV related. Regardless I would do what I can to get it now.

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
BJT #177921 03-04-2014 05:27 PM
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Bruce there are some very difficult decisions to make when facing this terrible disease. A second opinion has already been advised, which I will also suggest. The best thing you can do is to get all the info, facts and treatment plans (including a second possibly third opinion), sit down and talk it all over with your family. At some point you will need to put your faith in your medical team and do your very best to look ahead and not "what if".

Best wishes with your difficult choices.


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
BJT #177961 03-06-2014 07:12 AM
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Bruce, similar info to what I was told in 2012. This was not the time I wanted to become an expert and make one of the more important decisions about my life. This is a polarizing topic on the site. As folks above mention get several opinions, find both younger and older RO's, they tend to have differing views which are important to understand. Some factors which I considered were... Existing health, access to screening, personal ability to live with higher uncertainty, my family's ability to handle uncertainty, oral health, QOL in 15 years, etc... It is a tough one, I involved a couple close family members in help me. There is no looking back, you simply make the best personal decision based on the very imperfect info available.


Nov2011Tonsil Cancer Stage3 T1N1 HPV+, Non-smoker, slight drinker
Dec2011 Radical Tonsilectomy (TORS),
Jan2012 Neck Disection areas 2,3,4
Feb2012 Opinions from 5 RO's decision for No Rads/No Chemo
Jan2013 all clear at 1 year , continue regular check-ups
Jan2014 all clear at 2 years, less frequent check-ups
Jan2015 all clear at 3 years, MRI, chest x-ray, blood work all good
Maria #177962 03-06-2014 07:15 AM
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Marie,

When you say that your saliva is returning, did you have radiation therapy? Can you share that experience with me. This is what i really don't what to go through because if the likely hood of this cancer coming back is only a 5% difference with or without radiation, then i will elect not to get treated.

Thanks,

Bruce


Bruce
MikeM #177964 03-06-2014 07:21 AM
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Mike,

So you had no Rad or Chemo, right? It seems that your procedure was close to mine. What made you decide to for go the treatment? i would really appreciate your comment. My doctor was great and he seem confident in stating that all cancer was removed from all affected areas.

Bruce


Bruce
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Cheryl, thanks for the post and yes it is HPV positive. I don't want Reds. What side effect did you have? This really scares me the most and since my doctor told me that there would be a 10% chance with RAD that the Cancer would come back and a 15% without RAD, then i would elect not to go through the RAD treatment.


Bruce
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thank you Christine.


Bruce
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