Right Neck Dissection, Panendoscopy, Tonsillectomy, Nasopharynx Biopsy

RonJ552002
RonJ552002 Member Posts: 12
in Head and Neck Cancer #1
Monday the 23rd I'm scheduled for surgery. Right lymph node biopsy showed Squamous Cell Carcinoba.PET scan identified right tonsil as the likely primary with 2 lymph nodes also highlighted on the scan. Met with the Radologists this morning and came away totally depressed. Initial plan is for 35 visits. Jeez this is making my prostate cancer look like a walk in the park. Had surgery for it and 10 years later no problems.
What if I don't take the radiology treatments? If I get a clear PET scan after the surgery am I out of my mind to think that I can avoid the treatments.

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Are you crazy?
    Just kidding, its a logical question. The short form of the answer is this: lacking radiation, the odds of the surgical approach curing you are very low. With rads, your cure rate is quite good. The two problems of not doing radiation are as follows:

    1) Unless you get a radical tonsillectomy, which is one heck of an operation, you won't likely get all the primary cancer. Then you'll get a recurrance.

    2) If you have two nodes that show on a PET scan, there may well be another node or two that have microscopic disease.

    You want to get this thing before it spreads to distant sites. Once it has done that, your odds of cure go way down.

    The rads can be tough to endure, but there is a good reason they are recommended.


    Welcome to the club. Many have walked the way you are going, and many are still around to talk about it.


    Pat
  • Pam M
    Pam M Member Posts: 2,196
    #3
    If I Had It to Do All Over
    I'd do the same. Doc recommended radiation as part of my treatment, and if I had known then what I know now, I would have been even more eager to get the radiation started and over than I was when I was first diagnosed. It was no fun, but I got to hear three docs say "no evidence of disease".

    Good luck with your decision making process. I know it can be a strain. Do well.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Walk This Way......
    Actually, I walk a little to the right now, LOL...

    Similar to your diagnosis, STGIII SCC Right Tonsil and a lymphnode on the same side (HPV+)...

    Sixteen weeks of four different types of chemo, seven of those were concurrent with weekly chemo/daily rads...

    Like Pat above mentioned...it's an agressive treatment, but one that as proven to render the best results.

    It's tough but doable...everyone is different. That goes for reaction and recovery...I was one of the lucky ones with minimal reactions and lasting damage, perhaps you will be also.

    Clean and clear going on three years post treatment now.

    BTW, welcome to the forum.....great people here and tons of info and expereince...

    Also check out the SuperThread, tons of great info for a newbie like your self;

    SUPERTHREAD

    Best,
    John
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #5
    Skiffin16 said:

    Walk This Way......
    Actually, I walk a little to the right now, LOL...

    Similar to your diagnosis, STGIII SCC Right Tonsil and a lymphnode on the same side (HPV+)...

    Sixteen weeks of four different types of chemo, seven of those were concurrent with weekly chemo/daily rads...

    Like Pat above mentioned...it's an agressive treatment, but one that as proven to render the best results.

    It's tough but doable...everyone is different. That goes for reaction and recovery...I was one of the lucky ones with minimal reactions and lasting damage, perhaps you will be also.

    Clean and clear going on three years post treatment now.

    BTW, welcome to the forum.....great people here and tons of info and expereince...

    Also check out the SuperThread, tons of great info for a newbie like your self;

    SUPERTHREAD

    Best,
    John

    Not Fun
    Welcome to the forum Ron,

    I too faced the same dilemma with my cancer. Yours is much more serious than mine and I would take their advice and just get 'er done.

    Mine was a low grade with a 25% of it coming back. That means a 75% chance of being free from it forever. I am not willing to take that chance. What I've been through I do not want to face again. Therefore the RT is coming up for me too. I just had a neck dissection which wasn't too bad. My tongue surgery was not fun one bit.

    You've already had one cancer and beat it. Time for round 2. You'll beat this too. Just follow your RT oncologists advice and it will all be in the past a year from now.

    Good luck on your recovery,

    Tommy
  • RonJ552002
    RonJ552002 Member Posts: 12
    #6
    tommyodavey said:

    Not Fun
    Welcome to the forum Ron,

    I too faced the same dilemma with my cancer. Yours is much more serious than mine and I would take their advice and just get 'er done.

    Mine was a low grade with a 25% of it coming back. That means a 75% chance of being free from it forever. I am not willing to take that chance. What I've been through I do not want to face again. Therefore the RT is coming up for me too. I just had a neck dissection which wasn't too bad. My tongue surgery was not fun one bit.

    You've already had one cancer and beat it. Time for round 2. You'll beat this too. Just follow your RT oncologists advice and it will all be in the past a year from now.

    Good luck on your recovery,

    Tommy

    Had my surgery Monday. No
    Had my surgery Monday. No pathology results back yet but Dr's nurse said that the surgeon removed 5 lymph nodes (one layer I think), both tonsils and one small spot below the right tonsil. Came home Tuesday morning with 2 JP drains still in place. Moderate pain yesterday but felt a lot better today.I did sneak a Riccola into my mouth and it helped immensely. Wife took the week off this week to be my nurse but come Monday I'll be on my own during the day. Don't anticipate any troubles and have several appointments to keep.
  • cdennis2011
    cdennis2011 Member Posts: 1
    #7
    In july I had the same
    In july I had the same surgery they removed 30 lymph nodes went thru 35 weeks of radiation I just had a pet scan and I am clear of all cancer it was worth it Get a feeding tube because you will need it but it isnt that bad
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    cdennis2011 said:

    In july I had the same
    In july I had the same surgery they removed 30 lymph nodes went thru 35 weeks of radiation I just had a pet scan and I am clear of all cancer it was worth it Get a feeding tube because you will need it but it isnt that bad

    35 Weeks....
    Dang, you should be all clear...., LOL.

    Sorry, just teasing on you, I'm sure you meant 35 days.

    Welcome to the forum, glad you got the all clear.

    Here's a link to the SuperThread which has tons of great infomation and links of contributions from various members;

    SuperThread

    Best,
    John
  • RonJ552002
    RonJ552002 Member Posts: 12
    #9
    cdennis2011 said:

    In july I had the same
    In july I had the same surgery they removed 30 lymph nodes went thru 35 weeks of radiation I just had a pet scan and I am clear of all cancer it was worth it Get a feeding tube because you will need it but it isnt that bad

    Update: Visited with the
    Update: Visited with the surgeon today and got the pathology results and sutures removed. The best part of the pathology report was that they identified where the cancer originated-base of the tongue underneath the right tonsil. From there it had spread to 4 lymph nodes. During surgery on the 23rd they removed both tonsils and the 4 lymph nodes.
    Waiting until you're 65 to have your tonsils removed is not a good plan. If I had a feeding tube in I'd be using it. Swallowing is downright painful.I will say that after the drains came out and I could go back to sleeping with my CPAP with moisture on high has helped.
    Radiation and Chemo schedule still pending but should start in about a week.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #10
    RonJ552002 said:

    Update: Visited with the
    Update: Visited with the surgeon today and got the pathology results and sutures removed. The best part of the pathology report was that they identified where the cancer originated-base of the tongue underneath the right tonsil. From there it had spread to 4 lymph nodes. During surgery on the 23rd they removed both tonsils and the 4 lymph nodes.
    Waiting until you're 65 to have your tonsils removed is not a good plan. If I had a feeding tube in I'd be using it. Swallowing is downright painful.I will say that after the drains came out and I could go back to sleeping with my CPAP with moisture on high has helped.
    Radiation and Chemo schedule still pending but should start in about a week.

    It's good to have a plan in place
    Thanks for the update. You are right. Tonsillectomy isn't a lot of fun. It is good they have located the primary. That helps shape your radiotherapy. Keep the faith, Ron. You have every reason to expect good results to treatment. Just take it one day after another.

    Pat
  • RonJ552002
    RonJ552002 Member Posts: 12
    #11
    longtermsurvivor said:

    It's good to have a plan in place
    Thanks for the update. You are right. Tonsillectomy isn't a lot of fun. It is good they have located the primary. That helps shape your radiotherapy. Keep the faith, Ron. You have every reason to expect good results to treatment. Just take it one day after another.

    Pat

    My surgeon insisted that I
    My surgeon insisted that I get my fluoride trays before I started radiology treatments. Meeting with the Radiologists last week he made the statement that I would not be using them during the treatment period. Is this normal?
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #12
    RonJ552002 said:

    My surgeon insisted that I
    My surgeon insisted that I get my fluoride trays before I started radiology treatments. Meeting with the Radiologists last week he made the statement that I would not be using them during the treatment period. Is this normal?

    heck no
    Use during treatment is highly recommended. What exactly was his objection to this? You want a high-fluoride environment during and after treatment. I've now been through radiation twice, both sets of nuclear med docs, and the medical oncolotist, the university dentist who specializes in radiation tooth problems, and the ENT oncologist wanted me using trays actively during treatment.

    Frankly, were I you, and certain I'd heard this right, I'd just not make a big deal out of it. I'd just go ahead and use the trays. The qualitative changes in saliva, let alone the quantitative changes, take place very quickly into radiation, and you just don't want to have that environment messed up. Rampant carries is a bugger, as you can read in other posts on this board.

    Speaking of which, I earlier posted a dispositive article which includes this discussion on a thread just below which is about dry mouth.

    Best to you.

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