To Radiate Or Not To Radiate That Is The Question

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tjuhlin
tjuhlin Member Posts: 19
edited March 2011 in Head and Neck Cancer #1
I posted here about a month ago and a great many of you responded to my questions and offered some very good insight and now I'm back.

I had a "radical" neck dissection on March 9th and now I am in recovery. According to the ENT surgeon, he got 99% of the cancer in my neck and the doc's did locate and remove the source of the squamous cell neck tumor which they found on the top of my head.

My question to you all is if I should receive radiation or not?

The doctors at the Phoenix Mayo Clinic want me to undergo radiation and right now have developed a plan for me to go five days a week for about six weeks for treatment.

I have a sister in law who is a Anesthesiologist and she recommends that I don't get radiation because of the irreparable damage radiation does to your teeth, tongue and the jaw bone. She went on to explain that the "Quality of Life" is worth more than have to use a feeding tube, loosing teeth, swollen tongue and facial disfigurement.

She further explained to me that my doctors are dedicated to rid me of the cancer inside me but do not take in consideration the loss of "quality of life" in doing so.

Right now, I believe it is not imperative that I have radiation treatments and I am unsure of the why the rush for me to do so (I just started questioning myself after the conversation with my sister in law).

The ENT surgeon and his staff do want to see me once every three months for follow up exams.

My question to all of you that have had neck radiation what were your positive and negative side effects?

I welcome your thoughts on this regardless of viewpoints.

Thanks

Terry
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Comments

  • Cherokeegirl
    Cherokeegirl Member Posts: 11
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    Sounds like your Sister in
    Sounds like your Sister in law don't like you very much. I would do what your Doc says. I think he would know more.
    On the serious side.......Doctors DO care about the quality of life........what right does she have to say such a thing? My Husbands Doctors are still seeing him even though the cancer is gone. My husbands Doctors told him about sesame seed oil to help with the taste buds and you know what it was only a matter of a few days and he was tasting things again. No not 100% of the taste buds returned but he does enjoy most of what he eats.
    This is YOUR life not her's,not mine,not the Doctors YOURS. Remember they are doing it to HELP you not HURT you.
  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    A Question for You?
    Terry,

    I am glad to see that you are here to ask questions. You had the neck disection first which is in my opinion a good thing as our skin and tissue heal at a faster rate then if we have the radiation first.

    You mentioned that the Doctors got 99% of the cancer. My question to you is this, do you really want to take the gamble that the cancer won't return by not receiving the radiation? I had a radical neck disection and then the same 30 treatments that you spoke of. True, I have no saliva, but I was treated 6 years ago and since then, they have improved the medicines to help save the saliva glands along with better aim points during the radiation.

    Yes, you will have sores in your mouth, on your tongue and in your throat. You can do this to make sure that you have put forth your best effort to beat this beast. Even though many of us have traveled this road and we took all the treatments available, we on occassion look over our shoulders wondering if it will return. If you decide to not take the advice of your Doctors, will you then wonder if that stray cancer cell is going to start all this over again?

    I was taught that you make sure somethings don't come back to haunt you later. Cancer is our enemy.....give it the final KO punch.

    My Best to You and Everyone Here
  • Cherokeegirl
    Cherokeegirl Member Posts: 11
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    About the sesame seed oil
    About the sesame seed oil you don't need to use alot at one time just a teaspoon once a day swish around the mouth and if you swallow it won't hurt anything. My Hubby used it for only a week or two.
  • Cherokeegirl
    Cherokeegirl Member Posts: 11
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    About the sesame seed oil
    About the sesame seed oil you don't need to use alot at one time just a teaspoon once a day swish around the mouth and if you swallow it won't hurt anything. My Hubby used it for only a week or two.
  • Cherokeegirl
    Cherokeegirl Member Posts: 11
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    About the sesame seed oil
    About the sesame seed oil you don't need to use alot at one time just a teaspoon once a day swish around the mouth and if you swallow it won't hurt anything. My Hubby used it for only a week or two.
  • Cherokeegirl
    Cherokeegirl Member Posts: 11
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    About the sesame seed oil
    About the sesame seed oil you don't need to use alot at one time just a teaspoon once a day swish around the mouth and if you swallow it won't hurt anything. My Hubby used it for only a week or two.
  • mswijiknyc
    mswijiknyc Member Posts: 421
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    Hi Terry :)
    I'm going to get right to the point, if being blunt hurts, then I'm sorry.

    My husband had a radical neck dissection with a complete laryngectomy October 2010. The doc then said almost the same thing - he got 99% of the cancer, but radiation (5 days a week for 6 weeks) at least with chemo to be sure. He was going for cure, too. And quality of life was a big issue for my husband's doc too.

    My husband deferred until after New Year's. By then it was too late, the cancer had come back and then some. My beautiful man passed on February 17, 2011.

    So if you would like to listen to your SIL, that is your option. I feel that short term pain (rads, PEG,) is far outweighed by the long term gain (LIFE). And the disfigurement she's talking about? And quality of life issues? Small changes in the long run, and I have yet to see a laryngectomy who would trade their stoma for a coffin, or their scars for the funeral home. Because those are the choices.

    Best wishes.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Another resounding vote for the radiation.
    Terry,

    To put it simply, surgery cannot get all the cancer cells. If you had a primary tumor, and metastatic tumors in your lymph nodes, then the cancer IS moving through your body, and it is still in there.

    I had stage 4 SCC, base of tongue, with metastases to lymph nodes on both sides of my neck. I got cut twice, burned, and poisoned. I had eight weeks of radiation, the maximum dosage, concurrently with three rounds of Cisplatin chemo (AKA "the raging bull"). I had a feeding tube DURING treatment. It's gone now. I was done with that, some six weeks or so after end of treatment.

    Hey, I still got my tongue, still got my teeth, jawbone is working fine so far. I can talk. I can taste. I can eat most things, in moderation, ten months out from end of treatment.

    I am so fortunate to still be alive. I will say, the quality of my life right now is EXCELLENT, because I am here, among my dear family and friends, working, playing, loving, and living my life. Please don't take the risk of refusing radiation. Not worth it.

    Deb
  • RushFan
    RushFan Member Posts: 224
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    Quality of life
    I also had surgery first. Susposedly a relatively simple 40 minute procedure to remove a suspicious lymph became 2+ hours due to extra-capsular extentions.

    Primary was not found after biopsies that were performed after I had healed up from surgery #1.

    The node was hpv+ SCC. Radiation was "mandatory" if I can put it that way. My Doctor at MD Anderson explained that rads were standard protocol...for me, at my age etc...a 90% "cure" rate. I was given the option of adding chemo to enhance the radiation to "throw the kitchen sink" at the cancer. My odds, if you will, would then be 90+%...maybe up to 95%.

    I'm young. I have four children and a great wife. Cancer was not in my plans. I opted for the chemo with the radiation. Radiation five days a week for seven weeks, chemo once a week for seven weeks. I lost 35 pounds and drank Ensure for a couple of months.
    It sucked, but I feel I'm very fortunate.

    I'm almost one year post treatment. I'm working full time. Working out again. Tons of energy. I have very limited saliva, but am able to eat and taste most foods and enjoy them. Not like before, but that's o.k. My ears ring...but they rang before. My jaw gets tight and I stretch and try to loosen it up every day. Some of my hair and beard are gone forever-no biggie. My lousy singing voice is even worse. All the new normal.

    Bottom line: No chances for me. I went the aggressive route. I just didn't want any doubts. It's early...but so far so good.

    All the best to you, and everyone here.
    Chuck.
  • wifeforlife
    wifeforlife Member Posts: 189
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    RushFan said:

    Quality of life
    I also had surgery first. Susposedly a relatively simple 40 minute procedure to remove a suspicious lymph became 2+ hours due to extra-capsular extentions.

    Primary was not found after biopsies that were performed after I had healed up from surgery #1.

    The node was hpv+ SCC. Radiation was "mandatory" if I can put it that way. My Doctor at MD Anderson explained that rads were standard protocol...for me, at my age etc...a 90% "cure" rate. I was given the option of adding chemo to enhance the radiation to "throw the kitchen sink" at the cancer. My odds, if you will, would then be 90+%...maybe up to 95%.

    I'm young. I have four children and a great wife. Cancer was not in my plans. I opted for the chemo with the radiation. Radiation five days a week for seven weeks, chemo once a week for seven weeks. I lost 35 pounds and drank Ensure for a couple of months.
    It sucked, but I feel I'm very fortunate.

    I'm almost one year post treatment. I'm working full time. Working out again. Tons of energy. I have very limited saliva, but am able to eat and taste most foods and enjoy them. Not like before, but that's o.k. My ears ring...but they rang before. My jaw gets tight and I stretch and try to loosen it up every day. Some of my hair and beard are gone forever-no biggie. My lousy singing voice is even worse. All the new normal.

    Bottom line: No chances for me. I went the aggressive route. I just didn't want any doubts. It's early...but so far so good.

    All the best to you, and everyone here.
    Chuck.

    wow... I should probably count to ten before I type this
    It is your life. You can chose whatever you want and I will honor and respect your choice. However, I would like your SIL to have nerve enough to tell my husband he (we) dont' have a quality of life!. Surgery, rads, chemo, Hyperbaric, teeth extraction, infections, ...swear to God after the last radiation treatment I actually asked the nurse ... is it possible he can live through this.... he was soooo sick.
    i yr post treatment. Working full time, hunting, fishing, WALKING IS DAUGHTER DOWN THE AISLE THIS YEAR!.. We have quality of life!~... Thank you God, Doctors, husband, support systems!... maybe your SIL should come stay with us for a week.
    Wife
  • adventurebob
    adventurebob Member Posts: 691
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    Tough choice
    Hi Terry,

    The rationale from your docs is most likely that the surgery most likely did not get all the cancer or that they can't be sure and that radiation will clean up whatever they might have missed. It is fairly standard to be suggesting this at this point and even chemo to accompany the radiation. They should have told you this was their intention from the start as most likely it has always been so. The docs do have a tendency to only tell you as much as you need to know so as not to scare you off. I originally was told that there was a chance that chemo would get everything and that no further treatment would be required. As soon as I finished chemo I was then told that chemo is never enough and that I would now need to do radiation. I then chose to do 7 weeks of radiation as well as more chemo as this gave me the best chance of being cured. For certain my "quality of life" has been impacted as radiation treatment was painful in many ways and I do have some lingering side effects. I do like to look at it like I now have a "quantity of life" that I can improve the quality of.
    It would be great if all of the cancer has been removed from your head. It is hard to know for certain though and radiation can certainly increase the odds. Of course there are side effects that are quite unpleasant. It is a tough choice. As always I would recommend 2nd and 3rd opinions from major cancer treatment centers before doing anything. Probably not a big rush to begin radiation immediately as your docs would have you believe but a decision should be made soon.
    I would be interested in knowing what you choose and how you are doing. I wish you the best whatever your choice.

    Bob
  • tjuhlin
    tjuhlin Member Posts: 19
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    Hi Terry :)
    I'm going to get right to the point, if being blunt hurts, then I'm sorry.

    My husband had a radical neck dissection with a complete laryngectomy October 2010. The doc then said almost the same thing - he got 99% of the cancer, but radiation (5 days a week for 6 weeks) at least with chemo to be sure. He was going for cure, too. And quality of life was a big issue for my husband's doc too.

    My husband deferred until after New Year's. By then it was too late, the cancer had come back and then some. My beautiful man passed on February 17, 2011.

    So if you would like to listen to your SIL, that is your option. I feel that short term pain (rads, PEG,) is far outweighed by the long term gain (LIFE). And the disfigurement she's talking about? And quality of life issues? Small changes in the long run, and I have yet to see a laryngectomy who would trade their stoma for a coffin, or their scars for the funeral home. Because those are the choices.

    Best wishes.

    Your Loss
    I am so very sorry for your loss. Thank you for sharing your story with me. I too wish you the best...

    Terry
  • Pam M
    Pam M Member Posts: 2,196
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    Quality of Life?
    Hmmmmm.

    I have to say - going through induction chemo followed by chemo rads followed by a modified radical neck dissection really degraded my quality of life - FOR A LIMITED PERIOD OF TIME. Am I back to "normal"? No. Do I suffer daily? Also, no. As far as disfigurement goes, I have two scars folks can readily see (if I'm exposing those body parts) - second belly button and larger, neck scar. I cannot eat a limited number of foods; but am able to taste, chew and swallow enough food that I now need to watch my weight. I truly feel that the bigger post treatment issues I have now can be attributed to the dissection (OK, except for the inability to eat chewy meat). I do understand some folks are living with much "bigger" aftereffects of chemo and radiation than I'm experiencing; I also understand that some have it easier. But, in general, I feel that the vast majority of us would not say that treatment has had a totally devastating effect on our bodies long term. Yes, some "irregularities" exist, but for me (and almost all here, I think), the "issues" we deal with do not make our life a tortured existence.

    I wish you the best - I remember how stressful it was for me to make a decision on how my treatment would go. Do well.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
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    Terry
    Get a 2nd/3rd opinion if you are unsure of the need for undergoing the radiation treatment.

    To say all doctors do not care about quality of life issues is certainly untrue. My doctors raised that very issue with me when discussing treatment options.

    Kindly clarify: Did your ENT surgeon say he got 99% of the cancer or was it he was 99% sure he got all the cancer? Either way it is not 100%.

    I beg to differ with your sis in law, but most of the side effects from radiation are not 'irreparable'. Yes there is the potential for longer term problems with your teeth/jaw bone. But the feeding tube - temporary, swollen tongue - temporary, mouth sores - temporary. Not sure where she got the facial dis-figuration from.

    The negative side effects I experienced were mouth sores, tasteless food, difficulty swallowing, loss of energy, weight loss. I didn't need the feeding tube. The side effects are not the same for everyone, some are worse off, others have an easier time of it.

    There are not many positive side effects from the radiation, except maybe you won't have cancer any longer. For some, the weight loss can be a positive. I can pretty much eat anything right now and not worry about putting on a few lbs too many.

    I am 7 months out from rads/chemo. I feel fine, have been back working at a job I love for the past 6 months and can eat most things except spicy food.

    If it was me, I would go ahead with the radiation treatment. Cancer is unforgivable, don't give it a 2nd chance.

    If you do decide to go ahead with the radiation, why wait???

    Terry, keep us posted on your decision and how you're progressing. Best of luck to you whatever path you choose. Cheers

    Jimbo
  • CLRRN
    CLRRN Member Posts: 127
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    Define quality of life.......
    Terry,

    I post on here occasionally but I do come here often to read other posts. I’m a caregiver/life partner for Mike. As many others, he presented with a swollen lymph node that did not go away after a treatment with antibiotics and a year ago (3/19) he underwent a radical neck dissection. Sure-they took out the primary tumor and 44 lymph nodes (2 were positive) but that was not enough for us.

    Yes, the side effects are horrible and some can be permanent but in the big picture, we/he decided he wanted every “life jacket” thrown at him to survive/beat this Stage IVa Tonsil Cancer. The ENT/Med Onc/Rad Onc all said-the best chance you have to beat this is to have radiation/chemo to do the “mop up” and get any remaining cells.

    No surgeon or doctor can put a % on how much they feel “they got”. We are dealing with mean little microscopic cells that like to migrate and hide places. The radiation will treat the local area of those nasty cells and the chemo treats systemically to kill any cells floating around.

    Mike’s treatments finished 6/17 and he’s had two clean PET scans since. The PEG is gone, he’s back at work full time, has dry mouth and for the most part eats a normal diet. He does struggle w/some foods. It was a horrible experience but he’s here to tell about it and has a great Qualify of Life. Our ENT docs told us, write a year off your life and then you can move on and that just what we’re doing.

    I think what you have to figure out is what “Quality of Life” means to you. Those irreparable damages that your sister in law mentioned don’t happen to everyone and this is your life. Most of the disfigurement (if you want to call it that) comes from the surgery, not the radiation- although Mike does have some discoloration (like a tan) on both sides of his neck-does he care? NO because he’s still here. Did he hate the PEG tube? Absolutely but he knew it was temporary. Again…he’s here.

    The hard part for me as a caregiver is that I’m an oncology nurse and know the treatment for Head/Neck cancer is by far the hardest but you can get through it. All of these amazing members in this group are a testament to strength and perseverance to live. Allow their stories and experiences to give you the strength (along with God) to get through some rough months but in the end, you will be able to say to yourself, I GAVE IT EVERYTHING I COULD.

    God Bless.

    Chris
  • ratface
    ratface Member Posts: 1,337 Member
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    Jimbo55 said:

    Terry
    Get a 2nd/3rd opinion if you are unsure of the need for undergoing the radiation treatment.

    To say all doctors do not care about quality of life issues is certainly untrue. My doctors raised that very issue with me when discussing treatment options.

    Kindly clarify: Did your ENT surgeon say he got 99% of the cancer or was it he was 99% sure he got all the cancer? Either way it is not 100%.

    I beg to differ with your sis in law, but most of the side effects from radiation are not 'irreparable'. Yes there is the potential for longer term problems with your teeth/jaw bone. But the feeding tube - temporary, swollen tongue - temporary, mouth sores - temporary. Not sure where she got the facial dis-figuration from.

    The negative side effects I experienced were mouth sores, tasteless food, difficulty swallowing, loss of energy, weight loss. I didn't need the feeding tube. The side effects are not the same for everyone, some are worse off, others have an easier time of it.

    There are not many positive side effects from the radiation, except maybe you won't have cancer any longer. For some, the weight loss can be a positive. I can pretty much eat anything right now and not worry about putting on a few lbs too many.

    I am 7 months out from rads/chemo. I feel fine, have been back working at a job I love for the past 6 months and can eat most things except spicy food.

    If it was me, I would go ahead with the radiation treatment. Cancer is unforgivable, don't give it a 2nd chance.

    If you do decide to go ahead with the radiation, why wait???

    Terry, keep us posted on your decision and how you're progressing. Best of luck to you whatever path you choose. Cheers

    Jimbo

    You have to consider this side effect
    It's a tough decision. The tooth problems are a huge PITA. But this is the real question. Ask your doctor this question? Then make your decision. I want to say, that knowing the answer to that question, I would still get the radiation but you at least have to throw it in the mix.

    You state the cancer has a 1% chance of comming back? What is the chance of radiation exposure giving you a second cancer a few years down the road, higher than 1 percent? Just turn on the TV to the Japan scenario.

    Again I personally think that 'peace of mind' that I've done everything possible is priceless and would get the radiation, but radiation has severe lifelong effects and your SIL is right in asking the question and your right too investigate. Let us know what you decide.
  • Hondo
    Hondo Member Posts: 6,636 Member
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    CLRRN said:

    Define quality of life.......
    Terry,

    I post on here occasionally but I do come here often to read other posts. I’m a caregiver/life partner for Mike. As many others, he presented with a swollen lymph node that did not go away after a treatment with antibiotics and a year ago (3/19) he underwent a radical neck dissection. Sure-they took out the primary tumor and 44 lymph nodes (2 were positive) but that was not enough for us.

    Yes, the side effects are horrible and some can be permanent but in the big picture, we/he decided he wanted every “life jacket” thrown at him to survive/beat this Stage IVa Tonsil Cancer. The ENT/Med Onc/Rad Onc all said-the best chance you have to beat this is to have radiation/chemo to do the “mop up” and get any remaining cells.

    No surgeon or doctor can put a % on how much they feel “they got”. We are dealing with mean little microscopic cells that like to migrate and hide places. The radiation will treat the local area of those nasty cells and the chemo treats systemically to kill any cells floating around.

    Mike’s treatments finished 6/17 and he’s had two clean PET scans since. The PEG is gone, he’s back at work full time, has dry mouth and for the most part eats a normal diet. He does struggle w/some foods. It was a horrible experience but he’s here to tell about it and has a great Qualify of Life. Our ENT docs told us, write a year off your life and then you can move on and that just what we’re doing.

    I think what you have to figure out is what “Quality of Life” means to you. Those irreparable damages that your sister in law mentioned don’t happen to everyone and this is your life. Most of the disfigurement (if you want to call it that) comes from the surgery, not the radiation- although Mike does have some discoloration (like a tan) on both sides of his neck-does he care? NO because he’s still here. Did he hate the PEG tube? Absolutely but he knew it was temporary. Again…he’s here.

    The hard part for me as a caregiver is that I’m an oncology nurse and know the treatment for Head/Neck cancer is by far the hardest but you can get through it. All of these amazing members in this group are a testament to strength and perseverance to live. Allow their stories and experiences to give you the strength (along with God) to get through some rough months but in the end, you will be able to say to yourself, I GAVE IT EVERYTHING I COULD.

    God Bless.

    Chris

    Hi Terry

    I too would agree on getting a second opinion, and if the doc says you should do the rad and chemo, then go for it my brother. This stuff you have can take you life very fast it is not something to fool around with.

    Also remember there is very good life after cancer treatment, many of us are proof of that.

    All the best to you my friend
    Hondo
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
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    QUALITY OF LIFE
    Just my opinon, but having to be dependent on a feeding tube for 3-6 months is a lot better than possibly having a reocurrance. There are no guarantees even with the radiation, but it does increase your odds significantly. I was radiaited on both sides of my neck with the last treatment on 10-21-10 and I have had no problems with my jaw bone or teeth. That is not to say I wont at some time in the future.

    I opted for the surgery, chemo and radiation and have no regrets.

    Mike
  • Goalie
    Goalie Member Posts: 184
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    Hondo said:

    Hi Terry

    I too would agree on getting a second opinion, and if the doc says you should do the rad and chemo, then go for it my brother. This stuff you have can take you life very fast it is not something to fool around with.

    Also remember there is very good life after cancer treatment, many of us are proof of that.

    All the best to you my friend
    Hondo

    Do the Treatment
    OK, I don't post that often but this is important. My opinion (I'm not a doctor nor do I play one on tv) is to do the treatment.

    I was a primary in the tonsil (HPV+) and mets to one nearby lymph node. We did a tonsillectomy because it is very non-invasive and can be snipped out. My surgeon didn't want to do the neck dissection then because he could not be sure he would get it all. So we did the treament to kill everything that we knew was there and anything possibly floating free.

    I am a couple of months out now from the end of my nine weeks of rads and chemos. The side effects from these immediately and now are nothing compared to dying. My neck looks fine. My saliva is down some and my taste buds not quite there. So, what?

    After I was mostly healed from the treatments we did a neck dissection but it was fairly minimal. The PET and CT scans said everything was dead so he was confident that he wouldn't be disturbing anything. Of the 26 lymph nodes taken out 25 never had cancer and the one that had was dead dead dead. Now my jaw is sore and I have mouth sores that make eating a chore. But this is comparatively nothing. The inconvenience of this last operation is far outweighed by knowing that it is over. Scans and biopsies say it is over.

    I have gained back about 20 of the 35+ pounds lost and last weekend I played in a hockey tournament. I am back to playing three days a week or more. This would not have been possible and my life would not be what is it today if I hadn't done the whole treatment. Again, my aidvice, if you want to be reading this board next year and the year after, is to do the treatment.

    Doug
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
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    Risk vs Reward
    Its all about risk vs reward. You need to ask yourself to you want to take the risk and deal with the reward. Your choice and I will support either of your choices.

    As far as quality of life. I did, radiation, chemo, disection. That was 15 years ago next week that I finished radiation and chemo. year one of recovery was the worst, year two recovery much easier than the first year. Starting approx. the 3rd year new normal starts and the grateful/thankful feelings begin day by day. I love my time just the way I am after going thru God's Workshop for adjustments.

    Terry, prayers for Wisdom go out for you.

    John