I have just been diagnosed with Tonsil and Soft palate SCC

Jahnsart
Jahnsart Member Posts: 41
in Head and Neck Cancer #1
The surgeon just called me today after the exploratory last friday, he said there were contra indications about using the robotic surgery because, if he has to take more out then he sees now, he will destroy my soft palate and can't fix it...If he does the standard surgery he can rebuild what he destroys...He hasn't said anything about any other alternatives and he seems very brusque and cocky to me...His assistant told me that as soon as he sees what is going on he will just schedule me for surgery...I said I would like to have a consult and discuss the options, she said, he usually doesn't do that and the next time I see him it will be in surgery...I said, no way, I want a chance for me and my wife to go over it...She relented...So, I am not very comfortable with the information I am getting....I just want to know that this very invasive surgery is the best way to go and what can I expect as to my recovery and functionality afterwards..

Comments

  • arndog64
    arndog64 Member Posts: 537
    #2
    Get a second opinion!!
    Get a second opinion!! Surgery is an option, my husband just finished treatment for stage 4 Base of tongue cancer and we opted not to have surgery first and went for chemo and radiation. It was brutal, but they are very optimistic that the treatment killed the cancer cells. Definately killed the tumor.
  • Jahnsart
    Jahnsart Member Posts: 41
    #3
    arndog64 said:

    Get a second opinion!!
    Get a second opinion!! Surgery is an option, my husband just finished treatment for stage 4 Base of tongue cancer and we opted not to have surgery first and went for chemo and radiation. It was brutal, but they are very optimistic that the treatment killed the cancer cells. Definately killed the tumor.

    I have one scheduled at Mayo
    Thanks for the comment, I have a second scheduled for next week at Mayo...I had to pull teeth just to get in at Mayo...I am just very nervous and concerned about the whole process and mostly the possible repercussions...I don't want them to start cutting my face and jaw up, then find out that there is a less invasive way to do it...Thanks for the support...
  • nwasen
    nwasen Member Posts: 235 Member
    #4
    2nd opinion
    I hope you are at a hospital where they treat this kind of cancer everyday not just once in awhile and yes, ask to meet with another doctor.
    I had stage 4 tongue cancer with 3 lymph nodes and the gold standard that was offered to me was surgery, followed by radiation and chemo. I went for just (JUST!) chemo and radiation. Kicked my butt by I am 6 months out and doing extremely well.
    Had three very caring docs..........don't settle for less.
    You are the consumer and don't forget it. Take your "business" to another doc or another hospital if needed. I went to OSU's the James, which is 76 miles from my home. I lived with friends during the 7 weeks of treatment.
    Explore every option, ask a lot of questions, go with your gut and take notes!
    Much peace to you
    Nancy aka toughcookie
    PS after turning down the surgery the other docs on my team said I made the right choice. When asked why it was offered they countered that it was because a surgeon said it' that is what they do!
  • DrMary
    DrMary Member Posts: 531 Member
    #5
    Brusque and cocky
    that's just about every surgeon - they are an arrogant breed. Our ENT/surgeon was cocky but empathetic and it turned out his cockiness was justified, as he's good. I agree with everyone else on the second/third/more opinion - keep going until you click.

    I don't get it - why does this guy think he can rebuild what he destroys but not what the robot destroys? It sounds like his ego might just be over the top, even for a surgeon.

    One big discussion in the H&N area seems to be whether it's best to do surgery first and then radiation or the other way around. Was that discussed? Is there any chance that the cancer could shrink with rad/chemo and therefore reduce the amount of surgery necessary? I suggest this as a question to ask; there might be a good reason for surgery first in your case, but they should be able to explain all options to you.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #6
    Good Idea 2nd Opinion
    During the course of my treatment for base of tongue cancer, I had a 2nd and a 3rd opinion.

    Surgery was discussed in my case. All 3 surgeons agreed that I was not a candidate for robotic surgery. While they could cut out the tumor with the robotics, they could not do the necessary reconstructive surgery (tongue flap) with it. Maybe this is what your surgeon is saying???

    I never did have the surgery. My treatment was chemo/rads. A post treatment PET/CT scan showed a hot spot, though much smaller, in the same area. Surgery was again discussed. One of the points that came out in our discussions was that they would want to cut to the margins of the original tumor. They could not be sure there were no lingering cancer cells still alive in the 'now supposedly cancer free' area of the original mass. The options presented to us were: cut to the original margins with conventional surgery or use the robotics and cut to the new margins of the shrunken tumor and take our chances there were no viable cancer cells still alive in the part left behind. Not a great set of choices. All 3 doctors recommended the conventional surgery. I would have opted for the same.

    Again, as I said I never did have the surgery. A subsequent MRI was clear. A follow up PET/CT still showed the hot spot, though diminished in size. Lingering inflammation is the prognosis.

    Hope this info helps you in some way. Good luck with your Mayo appointment. Hope you find a better comfort zone with the doctors there. Cheers.

    Jimbo
  • Jahnsart
    Jahnsart Member Posts: 41
    #7
    Jimbo55 said:

    Good Idea 2nd Opinion
    During the course of my treatment for base of tongue cancer, I had a 2nd and a 3rd opinion.

    Surgery was discussed in my case. All 3 surgeons agreed that I was not a candidate for robotic surgery. While they could cut out the tumor with the robotics, they could not do the necessary reconstructive surgery (tongue flap) with it. Maybe this is what your surgeon is saying???

    I never did have the surgery. My treatment was chemo/rads. A post treatment PET/CT scan showed a hot spot, though much smaller, in the same area. Surgery was again discussed. One of the points that came out in our discussions was that they would want to cut to the margins of the original tumor. They could not be sure there were no lingering cancer cells still alive in the 'now supposedly cancer free' area of the original mass. The options presented to us were: cut to the original margins with conventional surgery or use the robotics and cut to the new margins of the shrunken tumor and take our chances there were no viable cancer cells still alive in the part left behind. Not a great set of choices. All 3 doctors recommended the conventional surgery. I would have opted for the same.

    Again, as I said I never did have the surgery. A subsequent MRI was clear. A follow up PET/CT still showed the hot spot, though diminished in size. Lingering inflammation is the prognosis.

    Hope this info helps you in some way. Good luck with your Mayo appointment. Hope you find a better comfort zone with the doctors there. Cheers.

    Jimbo

    Jimbo55 You are spot on
    Just like Jimbo55 said, the robot cannot do the tongue flap and he is afraid that he will have to almost destroy the soft palate...No one has mentioned radiaton or chemo...I will see what Mayo says on the 4th of August...The original surgeon says that the only way to get to it, is to do a Mandibulotomy. He called today and said that the plastic surgeon is not in my insurance network so it will cost me $8,500 up front for the plastic surgeon...I was hoping to hear other all possible options before embarking on such drastic surgery...I am so frustrated by the lack of information I am getting from these Health Professionals..It is like pulling teeth to get information from them...I want to be prepared for the after effects of this surgery, what can I expect, etc..Sorry to bend your ear so much however, I read about the benefits of MRI and CAT Scans in seeing the tumors better...My doctors never did and MRI or Pet scan...One cat scan was unclear due to the metal in my teeth..I just wonder if they should have at least had one or the other in order to really see the tumors? I don't know anything about this and It is too new for me to speak in an informed manner about this...Thanks all for responding and listening/sharing.
  • Greend
    Greend Member Posts: 678
    #8
    Second opinion
    I had the same diagnosis and went through rads and chemo 15 years ago. Second opinion is vital....surgeons like to cut, radiologists like to zap and chemo specialists like to inject drugs.

    A second opinion is needed for certain.
  • Jahnsart
    Jahnsart Member Posts: 41
    #9
    Greend said:

    Second opinion
    I had the same diagnosis and went through rads and chemo 15 years ago. Second opinion is vital....surgeons like to cut, radiologists like to zap and chemo specialists like to inject drugs.

    A second opinion is needed for certain.

    Thanks for all of your support
    Thanks for all of the answers...I don't know which way I am going to go if I have to choose between Rad and Surgery...There are positives and negatives to both...I just feel so much better being able to talk with people about this...I am so ignorant of the process and I am researching as much as I can however, sometimes I am just overwhelmed and get so frustrated...I have never in my life been someone who is angry or short with people but lately I have been that way with people...They want to tell me to eat a cup of sweet potato a day, or that I probably had too much sex, or something inane and stupid like that..They say "why did you get it","maybe you weren't doing right or did something wrong or a combination of any other reason that I have cancer...I feel like telling them all to F-off...even though I wouldn't...It is strange for me to feel this way, and I am not sure why I do...I don't want platitudes and "you'll be fine from people" I wish they would just express their love and support and leave it at that...
  • DrMary
    DrMary Member Posts: 531 Member
    #10
    Jahnsart said:

    Thanks for all of your support
    Thanks for all of the answers...I don't know which way I am going to go if I have to choose between Rad and Surgery...There are positives and negatives to both...I just feel so much better being able to talk with people about this...I am so ignorant of the process and I am researching as much as I can however, sometimes I am just overwhelmed and get so frustrated...I have never in my life been someone who is angry or short with people but lately I have been that way with people...They want to tell me to eat a cup of sweet potato a day, or that I probably had too much sex, or something inane and stupid like that..They say "why did you get it","maybe you weren't doing right or did something wrong or a combination of any other reason that I have cancer...I feel like telling them all to F-off...even though I wouldn't...It is strange for me to feel this way, and I am not sure why I do...I don't want platitudes and "you'll be fine from people" I wish they would just express their love and support and leave it at that...

    "helpful" people
    Oh, the comments "helpful" people can make. . . there were days I could only talk to my kids and folks on the discussion boards, as no one else got it and I knew if I told some of the clueless folks to fudge off, I'd regret it later. I seriously thought of printing cards that said, "I don't need advice, or suggestions as to what caused his cancer, thanks. Please say, 'I'm so sorry to hear that; please let me know when I can help with rides, kid-watching, meals, housecleaning, etc.' Thanks." I didn't do that, but it made a good fantasy.

    They mean well, but most don't get it. Try to lean on the folks that do. You do have some decisions to make in the next few weeks and I hope your second opinion helps with that. If not, it's not illegal to get a third opinion (even if the second is Mayo). What counts is having confidence in your doctors and treatment plan.

    PS - Did they tell you how much was "too much sex?"
  • Jahnsart
    Jahnsart Member Posts: 41
    #11
    DrMary said:

    "helpful" people
    Oh, the comments "helpful" people can make. . . there were days I could only talk to my kids and folks on the discussion boards, as no one else got it and I knew if I told some of the clueless folks to fudge off, I'd regret it later. I seriously thought of printing cards that said, "I don't need advice, or suggestions as to what caused his cancer, thanks. Please say, 'I'm so sorry to hear that; please let me know when I can help with rides, kid-watching, meals, housecleaning, etc.' Thanks." I didn't do that, but it made a good fantasy.

    They mean well, but most don't get it. Try to lean on the folks that do. You do have some decisions to make in the next few weeks and I hope your second opinion helps with that. If not, it's not illegal to get a third opinion (even if the second is Mayo). What counts is having confidence in your doctors and treatment plan.

    PS - Did they tell you how much was "too much sex?"

    They left that part out
    Whatever "too much" sex is, He referred to it as maybe you ate too much chicken, meaning going south on the women...I said "you have got to be kidding me...If I ever had to give that up and it caused the cancer, I would gladly welcome any reperrcussions...As Winston Churchill said" Never Never Never Give Up".
  • buzz99
    buzz99 Member Posts: 404
    #12
    Jahnsart said:

    Thanks for all of your support
    Thanks for all of the answers...I don't know which way I am going to go if I have to choose between Rad and Surgery...There are positives and negatives to both...I just feel so much better being able to talk with people about this...I am so ignorant of the process and I am researching as much as I can however, sometimes I am just overwhelmed and get so frustrated...I have never in my life been someone who is angry or short with people but lately I have been that way with people...They want to tell me to eat a cup of sweet potato a day, or that I probably had too much sex, or something inane and stupid like that..They say "why did you get it","maybe you weren't doing right or did something wrong or a combination of any other reason that I have cancer...I feel like telling them all to F-off...even though I wouldn't...It is strange for me to feel this way, and I am not sure why I do...I don't want platitudes and "you'll be fine from people" I wish they would just express their love and support and leave it at that...

    Mayo's opinion
    Buzz and I were in your shoes about a year ago. He was diagnosed with Stage IV base of tongue cancer with 1 positive lympth node (he had tonsil cancer about 10 years ago and had a right radical neck dissection). The surgeon here in Albuquerque told us he would have to do major surgery and would have to break the jaw to get to the tumor and would have to remove more than half of his tongue. He also told us radiation was not an option as Buzz had had it 10 years ago and that chemo didn't work. He referred us to Mayo clinic in Arizona for robotic surgery. The Mayo doc told us Buzz was not a candidate for the robotic surgery but Chemo and Radiation were possible. We returned to Albuquerque for treatment. Buzz received chemo and was re-irradiated (yes, it can be done). Long story short, he has recovered after a brutual treatment. And no surgery. If your cancer was caused by the HPV virus, you are just unlucky (or predisposed genetically) and got cancer from it. HPV is found in about 80% of our population and most people do not get cancer from it. Buzz is and always has been a non-smoker. We don't know his HPV status but that would not make a difference in the treatment. I hope you can get some good information from Mayo's. Karen

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