Decision Time

Well, I thought I'd start a new thread as the other one was getting kind of long.  I am now at the point of making my treatment decision.  I have met (multiple times) with ENTs and once with Radiation Oncologist about my specific situation.  They took my case to their cancer board and both doctors agree that I have two paths I can take.

1. Surgery to remove tonsils and neck dissection to see if any lymph nodes are involved.  Neither dr had any luck getting my insurance company to budge on the PET scan (had CT scan only). Appearantly you have to be in stage 3 or 4 before they will approve.  My cancer appears to be in stage 2 at the moment.

2. Radiation no chemo and no surgery.  Roughly 35 treatments of radiation (TOMO machine).

I am seriously considering taking my chances on the surgery/neck dissection route and hoping they find no lymph node involvement in my neck.  If that happens to be the case then I most likely won't need to go through radiation (if they get good margins around the tonsil).  I believe this route will cause the least amount of side effects/long term issues as compared to going through radiation.  What do you all think? 

I keep wrestling with the following thoughts.  If I have surgery and the do find cancer in my lymph nodes, or can't get good margins around my tonsil, then I'll have to do radiation as well as heal from a tonsillectomy (which I hear is no fun as an adult) and neck dissection.  If I just go ahead and do radiation, I can skip the painful tonsillectomy, but then have to deal with the many side effects of this treatment.  If I don't have surgery with the neck disection I'll never know if I had any small traces of cancer or not.  If I didn't then I may have unecessarily put myself through radiation.

Another reason I think the surgery route may be a better option.....assuming no lymph node issues and good margins around the tonsil....is that if for some reason cancer was to come back years later, then radiation is still an option.  Surgery will aslo provide immediate relief from the large left tonsil in my throat that bothers me constantly.

What do you guys think is the better route.  I'm open to both, but keep coming back to the surgery route.  Also the ENT asked if I wanted him to take both tonsils out.  I don't know the answer to this question.  I think taking them both reduces risk of cancer finding my right tonsil later, but only taking the infected tonsil and leaving the other may prove to be less painful and an easier recovery.  Should I get both tonsils removed?

Thanks for listening everyone.

 

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Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Options

    While I'm just my husband's caregiver, after seeing all that he has been thru with radiation, chemo, surgery, second round of radiation and chemo, and all the side effects from the radiation (his was laryngeal cancer and 2nd primary of cancer at the cervical of his esophagus and then spread to lungs) I would opt for the surgery first and I still have my tonsils.   Radiation the first time, did a job on my husband's throat and they had to reconstruct this throat during surgery.  He had a must easier time with the surgery than he did with the radiation and chemo.

    Just remember everyone is different in how they react to any treatment and that includes removing your tonsils.  I know they say it is harder on adults when they remove their tonsils, but times have changed and methods have improved.

    Wishing you the best -- Sharon

     

  • lornal
    lornal Member Posts: 428
    tonsils

    Getting tonsils removed (even as a child) doesn't reduce the chance of getting tonsil cancer.  There is still tonsil tissue there.

    My tonsil cancer was stage 4.  Getting the other tonsil removed wasn't an option.  In fact, I recall the doctor saying removing both at the same time makes it harder to breath and eat because of the swelling.  But that could have been because he went way deep to get the tumor out.  Didn't have clear margins, so I had chemo and radiation after.

    Radiation was the roughest - if possible to avoid because they can get the whole tumor and there are no lymph nodes - I'd get the surgery.

    For my second cancer (in January) - I had surgery and no chemo/radiation.  Thank goodness - I don't know if I could have handled it again (I would have if I needed to, but I didn't need it)

    Lorna

    2007 & 2014

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    Choices at the cancer treatment buffet

    G55,

    In your case (it sounds like) you are more comfortable with surgery followed by “cancer monitoring”.  That leaves options on the table for downstream

    When the decision was mine, I opted for surgery, rads and Erbitux.  I wanted the cancer gone!  In hind sight, I truly did not understand the reality of side effects, but life is good and things have improved greatly and I would do it over again.

    I also think to properly stage and map H&N cancer a PET scan is essential, but that is just me.

    Good luck,

    Matt 

  • tommyodavey
    tommyodavey Member Posts: 726 Member
    CivilMatt said:

    Choices at the cancer treatment buffet

    G55,

    In your case (it sounds like) you are more comfortable with surgery followed by “cancer monitoring”.  That leaves options on the table for downstream

    When the decision was mine, I opted for surgery, rads and Erbitux.  I wanted the cancer gone!  In hind sight, I truly did not understand the reality of side effects, but life is good and things have improved greatly and I would do it over again.

    I also think to properly stage and map H&N cancer a PET scan is essential, but that is just me.

    Good luck,

    Matt 

    No Good Choices

    You and I may have a different type of cancer but the treatment is similar.  What was suggested to me was, do the surgery and hope for clear margins.  Then we did the radical neck dissection because the right lymph node was infected.  It ended up being two nodes showing positive.  Both surgeries showed clear margins.  So I questioned whether or not I really needed the radiation therapy.  Both my surgeon and Oncologist agreed that it was better to have it just to make sure nothing was left.

    The good news was the clear margins.  That allowed me to have low grade radiation treatment instead of the full regimen.  Just reducing the rads by a little bit made a huge difference in my after effects.  My effects were minimul and nothing bothers me now 2½ years later.  I only had 25 sessions at a slightly reduced amount. (I can't remember the numbers though)

     

    Don't take any chances with this.  Hit it, and hit it hard.  Yes, your throat will be very painful after surgery but take the pain meds and it'll help.  After a few weeks you'll be able to swallow a little.  Week by week it will get better.  Just do it all and don't look back.  That's my 2¢

     

    Tom

  • wmc
    wmc Member Posts: 1,804
    Just my thoughts.........

    Mine was Stage 3 supraglottic SCC T3; N0;M0, when I say the tumor board. First Dr that came in was Rad Onc. He was saying we'll do 5 weeks of Rad. [He had not seen all my other health conditions yet] Then came in the Surgeon and some other Dr. and 15 more, it's a teaching hospital, and they all looked down my throat. When we broke for lunch I saw one of the Dr in the hall and he said " you don't sleep good do you", No I don't.

    Now let me go back to before I went there. I wanted surgery first to remove the tumor. I had seen the photo of it and caughing up large amounts of blood and had silent asperating, food going down the wrong tube and not knowing it was happening. I have Stage 3 COPD, lungs look like a hand grenade went off in side, MRI photos. I did not want radiation first and was ready to tell them.

    Well the Head doctor who I wanted and did get is the head of ONC and the head surgeon as well. I'm prepaired for anything he could say. Well, I guess I wasn't ready for what he said wnen he told me my lungs are to bad and I cant survive radiation or surgery. I think I stopped breathing for several seconds. I was not ready for that. He then said they could do the surgery if I had a Trach put in. This would be perminent and they would remove my Voice box [Larynx] as well, and I would breath through my neck, but I could survive the surgery. They would do a neck dissection on both sides level 2~5 as a precaution. Now after the PET/CT I went to T4;N2;M0. Well I got what I wanted in a way. We did the surgery and I did not need Chemo or Radiation. Because of surgery first I healed very good. I got lucky, I ended up T3,N0,M0. Now the left side of my neck from ear to center of chin is numb and always will be from the surgery.

    I healed very well and was able to learn to talk in 17 days and eat anything I wanted to. Start on soft and go from there. Got back to work full time in 10 weeks. I have been NED for 13 months and don't expect anything to come back. But I could do radiation now if needed. There saving it for my lungs in the distant future. Oh, I still have my tonsils, go figure.

    I felt that you remove the tumor, don't shrink or try to kill it. If they can remove it that's what I wanted, you can always do radiation later. I never had a real choice. Mine was this or nothing, and see you later. I like the surgery...... I would take both out. The pain will be the same just on two sides but not more, and they will keep your pain undercontroll very well. I had no pain at all on the third day. Had some pain when the drain tubs came out but not bad. Why have to go back and for the other one. Most children that had then removed always had both.

    What ever you do chose to do, don't ever try to second guess your dission, always beleave it was the right one for you. You have to have faith in your doctors, and they do listen to you, and you have the final dission. You must have even more faith in yourself. You are the one that really decides how well you recover. Dr tells you to walk three times in the hospital do five. Belive in you. I was told persons with a laryngectomy can't, blow there nose, whistle, blow out candles, and many other things. I can do all of that. [Go to my expressions and There is a video, and some photos after the surgery as well] Best of luck with your dission I'm sure it will be the right one for you.

    Bill

     

  • gdawg55
    gdawg55 Member Posts: 40
    wmc said:

    Just my thoughts.........

    Mine was Stage 3 supraglottic SCC T3; N0;M0, when I say the tumor board. First Dr that came in was Rad Onc. He was saying we'll do 5 weeks of Rad. [He had not seen all my other health conditions yet] Then came in the Surgeon and some other Dr. and 15 more, it's a teaching hospital, and they all looked down my throat. When we broke for lunch I saw one of the Dr in the hall and he said " you don't sleep good do you", No I don't.

    Now let me go back to before I went there. I wanted surgery first to remove the tumor. I had seen the photo of it and caughing up large amounts of blood and had silent asperating, food going down the wrong tube and not knowing it was happening. I have Stage 3 COPD, lungs look like a hand grenade went off in side, MRI photos. I did not want radiation first and was ready to tell them.

    Well the Head doctor who I wanted and did get is the head of ONC and the head surgeon as well. I'm prepaired for anything he could say. Well, I guess I wasn't ready for what he said wnen he told me my lungs are to bad and I cant survive radiation or surgery. I think I stopped breathing for several seconds. I was not ready for that. He then said they could do the surgery if I had a Trach put in. This would be perminent and they would remove my Voice box [Larynx] as well, and I would breath through my neck, but I could survive the surgery. They would do a neck dissection on both sides level 2~5 as a precaution. Now after the PET/CT I went to T4;N2;M0. Well I got what I wanted in a way. We did the surgery and I did not need Chemo or Radiation. Because of surgery first I healed very good. I got lucky, I ended up T3,N0,M0. Now the left side of my neck from ear to center of chin is numb and always will be from the surgery.

    I healed very well and was able to learn to talk in 17 days and eat anything I wanted to. Start on soft and go from there. Got back to work full time in 10 weeks. I have been NED for 13 months and don't expect anything to come back. But I could do radiation now if needed. There saving it for my lungs in the distant future. Oh, I still have my tonsils, go figure.

    I felt that you remove the tumor, don't shrink or try to kill it. If they can remove it that's what I wanted, you can always do radiation later. I never had a real choice. Mine was this or nothing, and see you later. I like the surgery...... I would take both out. The pain will be the same just on two sides but not more, and they will keep your pain undercontroll very well. I had no pain at all on the third day. Had some pain when the drain tubs came out but not bad. Why have to go back and for the other one. Most children that had then removed always had both.

    What ever you do chose to do, don't ever try to second guess your dission, always beleave it was the right one for you. You have to have faith in your doctors, and they do listen to you, and you have the final dission. You must have even more faith in yourself. You are the one that really decides how well you recover. Dr tells you to walk three times in the hospital do five. Belive in you. I was told persons with a laryngectomy can't, blow there nose, whistle, blow out candles, and many other things. I can do all of that. [Go to my expressions and There is a video, and some photos after the surgery as well] Best of luck with your dission I'm sure it will be the right one for you.

    Bill

     

    Thank you everyone for your

    Thank you everyone for your input.  You all have been through so much and I appreciate your kindness.  Bill, I think similar to you here....get in there and remove it if possible, then go from there. That's the main reason I'm considering surgery first.  Let's get this desease out and if that's all that's required then bonus for me.  If they don't get it all or I have some in my neck then I'll certainly get in line for the radiation machine.  Just hoping to have to miss this step all together.  I can't help but think surgery offers the shortest recovery with the least amount of side effects.  I suppose taking both tonsils aout while there in there does make the most sense.....just thinking if they take only one, then maybe healing is a bit quicker with a little less overall pain.

    Thank you all for your input.  God bless you all.

  • donfoo
    donfoo Member Posts: 1,771 Member
    gdawg55 said:

    Thank you everyone for your

    Thank you everyone for your input.  You all have been through so much and I appreciate your kindness.  Bill, I think similar to you here....get in there and remove it if possible, then go from there. That's the main reason I'm considering surgery first.  Let's get this desease out and if that's all that's required then bonus for me.  If they don't get it all or I have some in my neck then I'll certainly get in line for the radiation machine.  Just hoping to have to miss this step all together.  I can't help but think surgery offers the shortest recovery with the least amount of side effects.  I suppose taking both tonsils aout while there in there does make the most sense.....just thinking if they take only one, then maybe healing is a bit quicker with a little less overall pain.

    Thank you all for your input.  God bless you all.

    charge ahead

    Based on what you posted I'd make the same decision: surgery to remove the primary and some nodes to look for any locoregional mets. Better chance of less long term side effects avoiding chemo and radiation. But surgery is not a picnic nor free of long term side effects. There are plenty of folks who have long term nerve and pain issues related to surgery.

    Battling oral SCC cancer under all conditions is never an easy trip but if you trust your doctors then trust their recommendation, charge ahead, and never second guess your decision.

     

    Good luck

    Don

  • Sailor123
    Sailor123 Member Posts: 97
    Hi.
    I truly wish I had never

    Hi.

    I truly wish I had never had radiation.  If I could go back I would have thought it through more and probably not opted for it.  I would have tried other things first.  It is the last card to play.

    Good luck.

  • gdawg55
    gdawg55 Member Posts: 40
    Sailor123 said:

    Hi.
    I truly wish I had never

    Hi.

    I truly wish I had never had radiation.  If I could go back I would have thought it through more and probably not opted for it.  I would have tried other things first.  It is the last card to play.

    Good luck.

    That's what I'm thinking as

    That's what I'm thinking as well.  Let's see if surgery can take care of it.....if it doesn't then radiation.  Thanks for your input.

  • gdawg55
    gdawg55 Member Posts: 40
    donfoo said:

    charge ahead

    Based on what you posted I'd make the same decision: surgery to remove the primary and some nodes to look for any locoregional mets. Better chance of less long term side effects avoiding chemo and radiation. But surgery is not a picnic nor free of long term side effects. There are plenty of folks who have long term nerve and pain issues related to surgery.

    Battling oral SCC cancer under all conditions is never an easy trip but if you trust your doctors then trust their recommendation, charge ahead, and never second guess your decision.

     

    Good luck

    Don

    Thank you, Don for your

    Thank you, Don for your input.  I meet with ENT again today to hopefully finalize a schedule for surgery.  I really think this is the best first option anyway.

  • gdawg55
    gdawg55 Member Posts: 40
    Udate as of today. I have my

    Udate as of today. 

    I have my tosillectomy and neck dissection surgery scheduled for Dec 31....happy new year to me.  Please keep me in your thougths and prayers.  I'll report back any findings afterwards.  Thanks so much for all your input and for sharing your experiences.  I does mean a lot.

  • wmc
    wmc Member Posts: 1,804
    gdawg55 said:

    Udate as of today. I have my

    Udate as of today. 

    I have my tosillectomy and neck dissection surgery scheduled for Dec 31....happy new year to me.  Please keep me in your thougths and prayers.  I'll report back any findings afterwards.  Thanks so much for all your input and for sharing your experiences.  I does mean a lot.

    You know we will.........

    You know I will keep you in my thoughts and prayers. Having it Dec 31.....Could be a good thing it two ways. It goes on this years insurance not 2015, and when you wake up from a good knghts sleep on Jan 1st It will be gone. You will start the New year with your new normal and it will just get better each day. So, may 2015 be your year and may you get a great big NED.

    Bill

  • gdawg55
    gdawg55 Member Posts: 40
    wmc said:

    You know we will.........

    You know I will keep you in my thoughts and prayers. Having it Dec 31.....Could be a good thing it two ways. It goes on this years insurance not 2015, and when you wake up from a good knghts sleep on Jan 1st It will be gone. You will start the New year with your new normal and it will just get better each day. So, may 2015 be your year and may you get a great big NED.

    Bill

    Thank you so much,

    Thank you so much, Bill....that's a very nice way to think about it.

  • louhou13
    louhou13 Member Posts: 46
    gdawg55 said:

    Udate as of today. I have my

    Udate as of today. 

    I have my tosillectomy and neck dissection surgery scheduled for Dec 31....happy new year to me.  Please keep me in your thougths and prayers.  I'll report back any findings afterwards.  Thanks so much for all your input and for sharing your experiences.  I does mean a lot.

    Hey gdawg,

    Hey gdawg, sounds like you're doing some good research. October 2012 I had a bilateral modified radical neck dissection (levels 1-5)along with left tonsil and some upper pallet removed. I have absolutely no regrets but wished I knew a few things going in. I woke up in pain I wasn't prepared for. Jaw, neck and ears hurt like heck BUT I didn't know the pain was temporary...thought it  all was permanent (ears still tingle a little...like when you sleep on them the wrong way). Hurt bad for a couple of days then got better.  I was in hospital for 7 nights but was scheduled for 10. After a day or 2 try to get up and walk; you'll feel better faster and hopefully get out sooner. Ask surgeon to have biopsy screened for PDL1. if tumor is expressing PDL1 you will have more options in the future if needed. Additionally, look into rehab. It helped me with recovering range of motion and with lymphedema(minor case).  Finally, ask your Dr. if you'll need an electric razor. Some of us with neck dissections use them due to loss of sensation under the chin...no big deal. I'm 2 years out and surgery has not stopped me from doing anything I did prior to the procedure. Hope this helps. 

  • lornal
    lornal Member Posts: 428
    gdawg55 said:

    Thank you so much,

    Thank you so much, Bill....that's a very nice way to think about it.

    2015

     

    And, you'll probably get your 2015 deductible met the first week of the year.  I know I did - I went into the er on Jan 2 - stayed until the 10th, had a trach on the 6th.  went back in on the 12, and stayed to the 28.

    Tonsilectomy and neck dissection will be a breeze!

    Lorna 2007 & 2014

     

     

  • gdawg55
    gdawg55 Member Posts: 40
    louhou13 said:

    Hey gdawg,

    Hey gdawg, sounds like you're doing some good research. October 2012 I had a bilateral modified radical neck dissection (levels 1-5)along with left tonsil and some upper pallet removed. I have absolutely no regrets but wished I knew a few things going in. I woke up in pain I wasn't prepared for. Jaw, neck and ears hurt like heck BUT I didn't know the pain was temporary...thought it  all was permanent (ears still tingle a little...like when you sleep on them the wrong way). Hurt bad for a couple of days then got better.  I was in hospital for 7 nights but was scheduled for 10. After a day or 2 try to get up and walk; you'll feel better faster and hopefully get out sooner. Ask surgeon to have biopsy screened for PDL1. if tumor is expressing PDL1 you will have more options in the future if needed. Additionally, look into rehab. It helped me with recovering range of motion and with lymphedema(minor case).  Finally, ask your Dr. if you'll need an electric razor. Some of us with neck dissections use them due to loss of sensation under the chin...no big deal. I'm 2 years out and surgery has not stopped me from doing anything I did prior to the procedure. Hope this helps. 

    Good information....thank you

    Good information....thank you louhou13.  I already use an electric razor so I'm good there.  I've heard and read a bunch about the pain that goes along with adult tonsillectomies.  Not really looking forward to that part, but am ready to get this underway.  I will ask about screening for PDL1...never heard of this, but will search it out later.  Dr tells me to expect 2 maybe 3 days in hospital if all goes well.  I will make sure to walk.  That was also recommended to me when I had my kidney donation surgery a few years ago.  There was some pain associated with that as well, but it got better as each day came and went.  I'm no stranger to the surgery table, but I don't really look forward to it.

    Thanks again.

  • gdawg55
    gdawg55 Member Posts: 40
    lornal said:

    2015

     

    And, you'll probably get your 2015 deductible met the first week of the year.  I know I did - I went into the er on Jan 2 - stayed until the 10th, had a trach on the 6th.  went back in on the 12, and stayed to the 28.

    Tonsilectomy and neck dissection will be a breeze!

    Lorna 2007 & 2014

     

     

    Yeah, I never usually get my

    Yeah, I never usually get my deductible met each year.  This year and next year will probably be the exception.  Sounds like you had some extended time in the hospital...hope mine smooth and easy and I'm out in a few days.

     

    Thanks for your reply.

     

  • Viilik70
    Viilik70 Member Posts: 73
    Radiation

    I had the radical neck dissections to both sides of my neck right before radiation and I would put off radiation until they told me I had to for sure. I had to have it because they found more cancer in my lymph nodes. Like you said there are lots of sides effect you don't want unless you really have to! That would be a no brainier for me if I had different circumstances. God bless,

     

    John J

  • HelenBack
    HelenBack Member Posts: 87 Member
    choices

    I just saw this and can offer up my husband's experience. He was given the exact same choice for the exact same diagnosis. Actually, initially the plan was just chemoradiation after the initial biopsy surgery which, itself was no piece of cake. His pet scan was inconclusive as to whether there were lymph nodes involved.

    He got a second opinion at Stanford and their tumor board suggested that he have left side neck dissection and tongue surgery to see if any tumor remained after biopsy surgery. Their hope was to find no lymph node involvement and if he had clear margins, no radiation. If there was lymph node involvement he would have radiation, but no chemo, unless they found extracapsular spread.

    His recovery from the neck disection was pretty straightforward. I know that tonsilectomies are quite painful but only for a few days. you have to stay on top of the pain with meds and really must also take a laxtive since the meds really mess things up. Don't wait on that!

    But more to the point: they discovered that he had 4 lymph nodes with cancer,  one with minor extracapsular spread. So he needed the chemoradiation after all. But here's what I believe: even though he needed the treatment anyway, it seemed that more information was better. The field of radiation is more targeted and it seems compared to many on here that he had fewer side effects from radiation. If he hadn't had the dissection, we wouldn't have known about the extracapsular spread and perhaps not treated that enough. 

    The whole ordeal was pretty terrible of course, but I'd say within a month or so from the end of treatment, he was 80% back to normal. Now, a year and a half out from the end of treatment it just seems like it was all a bad dream.

    We were hyper-vigilant about nutrition and somehow either througnh luck or diet he avoided thrush which was big. If you can start some kind of strong probiotic regimin (doctor approved, of course) it might make all the diffrence.

    Of course, every person reacts differently, my husband was pretty lucky, I guess, and I hope you will be too.

    Helen

    Good Luck,

    Helen

     

  • gdawg55
    gdawg55 Member Posts: 40
    Viilik70 said:

    Radiation

    I had the radical neck dissections to both sides of my neck right before radiation and I would put off radiation until they told me I had to for sure. I had to have it because they found more cancer in my lymph nodes. Like you said there are lots of sides effect you don't want unless you really have to! That would be a no brainier for me if I had different circumstances. God bless,

     

    John J

    Thanks, Viilik70 for your

    Thanks, Viilik70 for your valuable input.  I appreciate you taking time to respond to my thread.  I believe surgery first makes the most sense to me, then if I need radiation for lypmh node involvement then so be it.

    Take care and God Bless!