is tonsillectomy beneficial for Stage III tonsil cancer

Hello my husband is recently diagnosed with stage III SCC right tonisil. the neck lymphnode was the first sign and core biopsy was positive for HPV + SCC. The right tonsil lights up on PET. There is some debate on taking out the tonsil prior to radiation therapy. Most surgeons we have talked to say its of no benefit and radiation is the. one ENT thinks that taking out the tonsil will reduce the radation to the mouth. But it would delay his treatment for about 3+ weeks while he heals. The tonsillectomy doesn't seem to be the standard of care once diagnosis has already happened. We just want him  to get started with treatment it has been month already since initially finding the lymph node!! any thoughts? Has any one else had a tonsillectomy to possibly reduce the amount of radiation needed?

Comments

  • KB56
    KB56 Member Posts: 318 Member
    Tonsillectomy

    I had exactly what your husband has, even on the right side.   I had a tonsillectomy BUT when I went into surgery that morning they were trying to find my primary and it turned out to be my right tonsil so my ENT took it out.   Had she know going in that it was my tonsil, as opposed to being an unknown primary, she might not have taken it out but just let the radiaion kill the cancer.   I had to wait 3 weeks after my surgery to start radiation/chemo and the tonsillectomy was tough on me.  At 56 years old it was not a cake walk and my radiation oncologist said the tonsillectomy was "the most barbaric surgery they do". 

    I don't know that having or not having the tonsillectomy will reduce the amount/frequency of radiation but I know I lost 12 pounds or so with the tonsillectomy and when they started treatment for the cancer, i was weak/starting to recover from the tonsillectomy so it had to make the radiation a little tougher to deal with.    it seems like most of us have between 30-35 radiation treatments and I've know of people who have the tonisillectomy, and those who don't, but the radiation treatment seems to be roughly the same.

     

    Good luck... Your husband can do this and will need you in his corner the entire way!

    Keith

  • Guzzle
    Guzzle Member Posts: 710
    KB56 said:

    Tonsillectomy

    I had exactly what your husband has, even on the right side.   I had a tonsillectomy BUT when I went into surgery that morning they were trying to find my primary and it turned out to be my right tonsil so my ENT took it out.   Had she know going in that it was my tonsil, as opposed to being an unknown primary, she might not have taken it out but just let the radiaion kill the cancer.   I had to wait 3 weeks after my surgery to start radiation/chemo and the tonsillectomy was tough on me.  At 56 years old it was not a cake walk and my radiation oncologist said the tonsillectomy was "the most barbaric surgery they do". 

    I don't know that having or not having the tonsillectomy will reduce the amount/frequency of radiation but I know I lost 12 pounds or so with the tonsillectomy and when they started treatment for the cancer, i was weak/starting to recover from the tonsillectomy so it had to make the radiation a little tougher to deal with.    it seems like most of us have between 30-35 radiation treatments and I've know of people who have the tonisillectomy, and those who don't, but the radiation treatment seems to be roughly the same.

     

    Good luck... Your husband can do this and will need you in his corner the entire way!

    Keith

    Lefty

    Hi, same as Keith but left tonsil initially unknown primary. They removed mine for the same reason however I was lucky and didn't suffer so much from the surgery. Good luck, G.

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    this is pushing the envelope

    because it is unknown whether the dose of radiation should be reduced under the circumstances you describe.  It is only now being investigated whether HPV positive cancers could be treated with less radiation than HPV negative cancers, and the results will not be in even on this for a few years.  The standard treatment in your case would be chemo/rads, not surgery.  And there is no real literature to support the addition of a tosillectomy.

     

    best to you

     

    pat

  • donfoo
    donfoo Member Posts: 1,771 Member
    Welcome to CSN

    Hello,

    Thanks for joing. Lots of good info and good practical insight here. The RO (radiation oncologist) and dosimetrist are the primary specialists who can give you precise detail on the radiation dosing plan. Given he has locoregional mets, I agree with Pat that chemo/rads is the treatment to kill the cancer. I suspect the RO is going to dose the tonsil area plenty either way and the overall grays is about 70 in most all cases. Deescalation of rads and other treatment plans for HPV+ etiology are in trial stages. I have seen others volunteer for this sort of trial and would give serious caution if asked before agreeing.

    Good luck

    Don

  • Thank you for the info and

    Thank you for the info and quick replies. We just couldn't find any benefit to taking out the tonsil since radiation is needed anyway. Husband has decided to just start with the radiation. Thank you again and we'll try to be contributors to this site and help others in the same situation.

  • Laralyn
    Laralyn Member Posts: 532
    I had HPC+ SCC in my left

    I had HPC+ SCC in my left tonsil, soft palate and one lymph node. My oncologist said research indicated roughly the same survival odds with surgery versus without. I did not have surgery and just hit the two year mark with no recurrance. It's a decision only you, your husband and your doctors can make, but I wanted to let you know that not having surgery is a valid option in some cases.

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Everyone is Different

    It depends on the case. I was unknown primary, had nodal involvement on the left side of my neck but the pet also showed a slight uptake on the right palatine tonsil. Out both came along with several biopsies... Nothing...  Then came a selective neck dissection, removal of the cancerous nodes, 23 additional nodes, my lingual tonsils and several more chunks of flesh for biopsies... Still nothing! Never found the primary. I was Tx N2b MO Stage IV HPV+. Treated like it was BOT/Oropharynx. I was initially Dx's Nov. 2012 day before Thanksgiving. Between the surgeries and 2nd opinions, treatment didn't start until Marh 13th 2013. I initially found the node in August of 2012. Several months and two rounds of antibiotics before Dx. 

    My team felt surgery was best for the same reasons. Remove the cancer and find the primary = less treatment. Unfortunately nodes were extracapsular and were quite agressive in nature so I still did 6 weeks chemo/rads. The cancer has been there for some time already. A few weeks won't make a huge difference. Get another opinion if need be at a CCC. I will tell you that tonsillectomies as an adult are pretty miserable. 

    Positive thoughts and prayers

    "T"

     

  • osmotar
    osmotar Member Posts: 1,006
    Hi

    i was diagnosed with  stage 4a SCC of my right tonsil, with I lymph node involved . The diagnosis came after a fine needle aspiration, PEt scan, and the removal of my right tonsil, in late June 2011. I started chemo aug 2011 , every 21 days , cisplatin, taxotore, and 5fu pump from mon-fri, after the first chemo treatment the lump that was in the lymp node was gone. Starting nov. 1, 2011 I started 7 1/2 weeks of radiation to include 1 infusion of carboplatin for each week of rads . I have to say if it wasn't for the  small lump under my jaw line , I would have never gone to my primary care,who referred me to my ENT...when he scoped my  throat and asked if I knew  if my rt tonsil was swollen & inflamed I said no,  since my voice wasn't hoarse , my throat didnt hurt , I think he knew by looking at it what it was,but he did the antibiotics, the needle aspiration and finally the tonsil removal. in the end I think each doctor is different in their protocol, I would say ask questions, make sure your comfortable with the treatment plan, whether or not the tonsil or not reduces the amount of rads I don't know... Best wishes for whatever path you take to recovery. This coming Dec I will be 3 yrs out of treatment, all scans since have been clean. 

    linda 

  • Crazymom
    Crazymom Member Posts: 339 Member
    tonsillectomy

    I was at MD Anderson and they would not do the tonsillectomy.  I was stage III SCC  HPV posicive   left tonsil and two left lymph nodes.  It has been two year and I have had no recurrance and feel well.  I was at MDA the other day and there was a guy there who had tonsil and lymph nodes.  He had the tonsillectomy and after two year the cancer has come back.  I think it is very complicated and we need to listen to our doctors.  My doctors did not want to wait for the tonsils to heal before starting treatments. 

     

    Good luck...you have a difficult road ahead of you, but it is dooable.  I have two years NED and am doing great.   Ann

  • ratface
    ratface Member Posts: 1,337 Member
    Crazymom said:

    tonsillectomy

    I was at MD Anderson and they would not do the tonsillectomy.  I was stage III SCC  HPV posicive   left tonsil and two left lymph nodes.  It has been two year and I have had no recurrance and feel well.  I was at MDA the other day and there was a guy there who had tonsil and lymph nodes.  He had the tonsillectomy and after two year the cancer has come back.  I think it is very complicated and we need to listen to our doctors.  My doctors did not want to wait for the tonsils to heal before starting treatments. 

     

    Good luck...you have a difficult road ahead of you, but it is dooable.  I have two years NED and am doing great.   Ann

    Radiation will shrink them away

    Mine are pretty much stubs of their former selves. The radiation will accomplish much of what the surgery would have done anyway.