choices -- scc bot hpv+

I was diagnosed with Stage 3 (T1, N1, M0) scc on base of the tongue HPV 16 +.   I am hearing from the doctors there are two choices.   1: Seven weeks of radiation (no chemo), or 2: robotic surgery of the tumor along with removal of all nodes on one side of the neck (if any of the small nodes are found to have cancer though, then I will be doing the radiation too).   My pet scan shows only the one swollen node, but from what I understand another could still have cancer in it that the pet scan can't pick up.

I've been reading the forum and it is helpful to read the positive attitudes. Any input in help deciding between the two I'd sure appreciate.

Comments

  • jcortney
    jcortney Member Posts: 503
    similar

    Stage IV SCC BOT nodes on right side compromised.

    My first question would be where are you being treated and, is this the only opinion you've had?  Most (not all by any means) protocols call for Chemo and Rads for our disease and Radiation for any surgery to insure that there are no cells left behind.  For the most part, Chemo will not eradicate the disease but will knock it back and kill any cells that might have spread to other organs.  Rads will eradicate the disease in the field that is radiated.  Surgery alone tends to just treat what is local with no regard to cell(s) that might have come loose and spread.

    So, insuring that you have the best opinion possible is a must.  

    Good luck to you and ask lots of questions as you go through treatment.  There is amazing knowledge here about how to deal with the side effects of our treatment.

    Joe

  • ratface
    ratface Member Posts: 1,337 Member
    Surgery, hands down

    Hi James

    You are truly fortunate to have options. Most of us were dictated treatment protocols. Surgery alone is almost always the best option. They cut it out, done, finito. Life is good. Some minor risks with the proposed surgery which can be minimized by spending your money on a good surgeon. Radiation has multiple long term effects, risks of a second radition induced cancer,  thickening of arteries, destruction of saliva glands and weakening and brittleness to your jaw bone. Debilitating effects of radiation will stay with you  to some degree the rest of your life. Chemo is no picinic either, also can have long lasting side effects. This stuff is not good for you. We endure it to survive. I would opt for surgery every time. Radiation and surgery can always come later. You have a really curable diagnosis with multiple available treatment options. Play your hand incremently. 

     

  • SCC tonsil
    SCC tonsil Member Posts: 1
    Robotic sugery

    I had three surgeries.  I had a choice to not have the radical tonsillectomy and neck dissection but I wanted all of the known cancer out. Initially the doctors thought I just had cancer in two lymph nodes but thanks to the neck dissection they were able to identify two more and remove them.  Surgery does have additional side effects but a good surgeon using TORS can minimize the risk.  I then went through 33 radiation treatments and 3 treatments of cisplatin.  Google Dr. Rodrigo Bayon he has a video he did on TORS.  In the end it is your decision and what is best for you.  

  • jamesjean
    jamesjean Member Posts: 2

    Robotic sugery

    I had three surgeries.  I had a choice to not have the radical tonsillectomy and neck dissection but I wanted all of the known cancer out. Initially the doctors thought I just had cancer in two lymph nodes but thanks to the neck dissection they were able to identify two more and remove them.  Surgery does have additional side effects but a good surgeon using TORS can minimize the risk.  I then went through 33 radiation treatments and 3 treatments of cisplatin.  Google Dr. Rodrigo Bayon he has a video he did on TORS.  In the end it is your decision and what is best for you.  

    Thanks for the quick

    Thanks for the quick replies.   Jcortney, I was seeing that most here with similar were getting radiation and chemo and so I was wondering why I may be getting less.   Ratface,  What you're saying is what the surgeon said, that surgery is the way to go.   Surgery would be at University of Nebraska Medical Center.  There are some renowned head and neck surgeons there.    It  would be with the TORS.  The tumor board recommend surgery.   Looking up my staging on NCCN the guidelines are saying 1:Radation, or 2: Transoral or open resection of primary plus ipsilateral or bilateral neck dissection.   UNMC also have a clinical trial going on that I could be part of if desired.  

    I think I am leaning toward surgery now, but ask me in ten minutes and I'm back to radiation.    Thanks again for the help in deciding. 

  • MarineE5
    MarineE5 Member Posts: 1,029 Member
    I had Surgery followed by Radiation

    James,

    I am sure your head is spinning, so I will try to keep it simple from my end. I had Base of Tongue cancer. I was given the option of Radiation plus Chemo or Surgery followed by Radiation and maybe Chemo.

    I knew I wanted the cancer out of my body so I chose surgery. I had part of my tongue removed and a Radical Neck disection. I was then treated with 30 Radiation treatments, Chemo was a back-up in the event of reoccurance. That was 10yrs ago.

    As mentioned above, there are side effects that can last a life time. When I had the neck disection, I thought I only had 1 lymphnode involved, but there was 2 of them. Radiation took care of the rest. I do suffer from extreme dry mouth, no saliva what so ever. They have improved the machines since I went thru this and many here get back their saliva, may not be all of it, but some of it.

    Also as mentioned, this is your choice to make as far as which option you take.

    My Best to You and Everyone Here

  • donfoo
    donfoo Member Posts: 1,771 Member
    Radiation resricts future

    Radiation resricts future optons. It takes a lot more study before giving radiation to areas previously radiated. My own opion is not including radiation results on more recurrence. That is my own feeling, not based on any medical study.

    One of the goals of all my team was to hit hard and kill the ****. I got dosed with as much chemo and radation as possible and kept me breathing. Just a feeling but it seems those who do surgery only seem to reappear with recurrence. Maybe no scientific observations back this up; just seems like more recurrence with those who did not get blasted with both chemo and rads.

  • wmc
    wmc Member Posts: 1,804
    Second opinion..... Is an option too.

    Welcome to the H&N Group, and very sory you have to be here.

    I would consider getting a second opinion from a major cancer hospital with a tumor board. From what I have seen HPV+ responses very well with both Chemo and Rads. My doctors came out and told me what they felt was the best option for me. My choice was to have it or not. At the end they said I didn't need RADs but if I wanted them I could hav it also, but they felt it was not needed.

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

    I would have surgery first with the neck dissection. Then if still needed they can do RAD and chemo. If Rads are done before surgery the RADs make the skin tougher and more like leather to have surgery.

    Just my opnion, I only had surgery for Larynx SCC, T3;N0;M0; Had an laryngectomy and neck dissection on both sides and removed 86 glands. Just had my one year NED.

    Best of luck and remember it's open 24/7 for support.

    Bill

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    welcome

    jamesjean,

    Welcome to the H&N forum, where advice and/or opinions we have in spades.

    I was stage IVa, scc, bot, 1 lymph node, hpv+ and I opted for surgery, rads and Erbitux. At 2y6m post, I know a lot more about H&N cancer than I did, but with some reservations I might follow the same path.

    If your team says surgery only, that is the way to go, after all they are the experts and the radiation and chemo side effects can wait for another day.

    Good luck, good choice.

    Matt

  • cureitall66
    cureitall66 Member Posts: 913
    .....and my two cents.....lol

    Hi James,

    Glad you found this forum where there is plenty of information you can take with you.

    I'm a caregiver to 53 yr male, SCC BOT HPV 16+, Diagnosed Aug 2012 2 yrs out. His tx consisted of 7 weeks chemo (once a week)--Carboplatin & Paclataxel, Rads 7 weeks (5 days week). No surgery. All check ups so far have been good.

    The problem I have with some of these doctors is WHY on EARTH are they asking YOU what you want? The answer is clear....GET THE CANCER out and KEEP it out! My God, we are not doctors! We put our trust and faith in them to make the BEST decisions for us. I think for your piece of mind, you may want to consider a second opinion. This is not uncommon to do. Many have done this, including ourselves. You will most likely not second guess yourself then.

    Blessing to you and be sure to stay close in touch here. There are many here that will help you along the way. Be sure to check out the Superthread at the top of the topics.

    God Bless,

    ~C

  • Hondo
    Hondo Member Posts: 6,636 Member

    .....and my two cents.....lol

    Hi James,

    Glad you found this forum where there is plenty of information you can take with you.

    I'm a caregiver to 53 yr male, SCC BOT HPV 16+, Diagnosed Aug 2012 2 yrs out. His tx consisted of 7 weeks chemo (once a week)--Carboplatin & Paclataxel, Rads 7 weeks (5 days week). No surgery. All check ups so far have been good.

    The problem I have with some of these doctors is WHY on EARTH are they asking YOU what you want? The answer is clear....GET THE CANCER out and KEEP it out! My God, we are not doctors! We put our trust and faith in them to make the BEST decisions for us. I think for your piece of mind, you may want to consider a second opinion. This is not uncommon to do. Many have done this, including ourselves. You will most likely not second guess yourself then.

    Blessing to you and be sure to stay close in touch here. There are many here that will help you along the way. Be sure to check out the Superthread at the top of the topics.

    God Bless,

    ~C

    Hi James

    Welcome to CSN H&N glad to have you here with us. I agree with Bill on getting a second opinion and getting it from one of the major cancer institutions here in the US. For me MDA, John Hopkins, or Mayo Clinic are some of the best, there are a lot more just take your pick.

     

    Tim Hondo  

  • yensid683
    yensid683 Member Posts: 349
    my 2 cents

    I too was BOT, SCC, HPV+ but stage IVa, primary tumor was 3 CM and the largest of the lymph nodes was 6 CM, fortunately no mets outside of the neck.  I was given options as well but did some research and decided on an agressive program.  Stage 1 would be induction chemo, 5 days on high dose chemo as an in-patient, with 2 weeks between sessions, a total of 3, then chemo radiation and then if necessary surgery. 

    It is your choice to make but the more I read about the treatment plans the more studies seem to push chemo/rads and then surgery.

    Former football player Jim Kelly had SCC, HPV+ and they did surgery, declaring that they got it all and he was good to go.  Over the course of several months it re-asserted itself and he wound up with the combination therapy as well. 

    It's your choice, but I'd look at a 2nd opinion before making it

    best wishes for an easy treatment experience.

    Peter

  • ratface
    ratface Member Posts: 1,337 Member
    22%

    Just an after thought to my previous comment.  From My research 5 years ago  I discovered that there is roughly a 22% chance that BOT has spread to a same side lymph node in the neck. For the sake of simplicity it's roughly 1 out of 4. In staying with the surgical option you would eliminate that threat simply by being treated with the proposed neck disection.  

  • Robyn64
    Robyn64 Member Posts: 124
    ratface said:

    Surgery, hands down

    Hi James

    You are truly fortunate to have options. Most of us were dictated treatment protocols. Surgery alone is almost always the best option. They cut it out, done, finito. Life is good. Some minor risks with the proposed surgery which can be minimized by spending your money on a good surgeon. Radiation has multiple long term effects, risks of a second radition induced cancer,  thickening of arteries, destruction of saliva glands and weakening and brittleness to your jaw bone. Debilitating effects of radiation will stay with you  to some degree the rest of your life. Chemo is no picinic either, also can have long lasting side effects. This stuff is not good for you. We endure it to survive. I would opt for surgery every time. Radiation and surgery can always come later. You have a really curable diagnosis with multiple available treatment options. Play your hand incremently. 

     

    hello

    Hello,

    Your comment has really worried me now. I was given the option of surgery or rad/chemo, but they strongly advIsed against surgery saying it could affect my speech. 9 weeks now since treatment, really struggling with recovery. So now  that I opted for rad/chemo higher chance of coming back ? Suffering from my treatment probably the rest of my life ? Its not something I wanted to read. Been crying  lots because of painful throat still. I had cancer bot hpv16, 1st stage. Now this has me really scared. I find out on the 11th nov if cancer is gone.

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Robyn64 said:

    hello

    Hello,

    Your comment has really worried me now. I was given the option of surgery or rad/chemo, but they strongly advIsed against surgery saying it could affect my speech. 9 weeks now since treatment, really struggling with recovery. So now  that I opted for rad/chemo higher chance of coming back ? Suffering from my treatment probably the rest of my life ? Its not something I wanted to read. Been crying  lots because of painful throat still. I had cancer bot hpv16, 1st stage. Now this has me really scared. I find out on the 11th nov if cancer is gone.

    Robyn

    Your response to ratface's post caught my attention.  He was giving an answer taylored to the OP's situation, not to yours.  You need not to project your own circumstances into this answer, as your situation doesn't exactly fit.  Ratface may not ever look back at this thread, so your questions to him may go unanswered.  What he was saying is that, if surgery and radiation give equivalent results, then surgery is generally a better answer for first treatment.  These doctors aren't trying to trick us into making bad choices, they only offer alternatives if in their minds the choices are pretty equal.  The amount of pain you have nine weeks out is not that unusual.   It took me over six months to heal the mouth ulcers caused by radiation this last time, and mouth ulcers hurt.  It isn't acceptable that you experience that much pain, however, and you should get your pain management program adjusted to handle this, because there is no benefit to being miserable.   We chose to get treated because we judge living to be better than dying.   These treatments are rough, but they are necessary to effect cures, yet they are not guarantees of cure.   better times are coming for you.   It takes many of us a year or so to say life is worth living after finishing treatment.  And yes, some of us fail treatment and have to go through the whole pllanning and maybe the whole treatment thing again.   But taking this whole thing one day at a time is the important part of our commitment to ourselves.  It is the very best we can do.

     

     

    best to you

     

    Pat

     

     

     

     

     

     

     

     

     

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    james, that would be a hard

    james, that would be a hard decision.  only you can make that call.  wishing you the best with which ever way you go.

    God bless you,

    dj