Extranodal extension/extracapsular spread? No radiation?

kellydx
kellydx Member Posts: 3
in Head and Neck Cancer #1
My husband (now known as FrankenBob since the incision of his neck dissection a few weeks ago looked slightly worse than Frankenstein's neck) had extranodal extension in one of the cancerous lymph nodes. Another node positive but contained. Cancerous lymph nodes are bad enough, but the extranodal extension (AKA extracapsular spread) is that much worse. And his cancer seems to be squamous cell that metastasized from his external ear, which is uncommon and "high risk". AND he's healthy as a horse, fit, etc., BUT he's been a Type 1 diabetic for 45 years (he's 55 now), which makes any healing process much more difficult.

So, here's my tough question: If all the docs said your 2-3 year survival rate was about 20%, with or without radiation, but they want to do radiation anyway because doctors always want to treat, would you, hypothetically, want to go through the brutality of radiation to the head/neck? If big, peer-reviewed studies say radiation doesn't change the outcome or survival rates, but doctors want to treat anyway, would you choose the treatment? Or would you see what happens, hope you'll fall into the 20% who make it, eat well, enjoy life, seek out alternatives, etc?

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Hi Kelly
    You truly have a bit of a conundrum. It all boils down to exactly how confortable you are that you completely understand the treatment choices and survival statistics that are being presented to you. It makes no sense to give someone a very disabling treatment, that being head and neck radiation therapy, if there is no survival advantage. Certainly that recommendation should not be coming from a physician just because "that's what they always recommend." It should be coming from your treatment team because they are truly expert, both by virtue of training and experience, to maximize your husband's life expectancy, while minimizing the treatment insult to him.

    So what occurs to me is that you either need another opinion to see what other caring health care providers, expert at treating this situation, would tell you about your options, or you need to have this interpreted to you again by the same people. Something about what you've said does't ring true to even the Hippocratic oath here, and it really needs put to rest.

    I wish you two the best.
  • luv2cut1
    luv2cut1 Member Posts: 288
    #3
    Extracapsular spread and radiation
    Hi Kelly,

    I hope you consider getting a second, or maybe even a third, opinion and getting some questions answered. Radiation has come a long way just over the past few years, and I am not at all sure there is not a survival benefit to having radiation.

    My husband had SCC of the epiglottis in 2008. Treated with chemo/rads. Recurrence in neck in 2009. Radical neck dissection with pectoral flap (yes, we are very familiar with the frankenstein syndrome). Neck dissection revealed four positive nodes with extracapsular spread. Prognosis was not good. The cancer center that treated him originally refused to do reirradiation as they didn't see survival benefit, especially considering side effects. The ENT that did the surgery strongly recommended that we get a second opinion, as he believed there might be a survival benefit to reirradiation. We got a second opinion that scared us half to death listing all of the side effects, etc, and not giving much of a survival benefit. We decided to go to the major cancer center in our area and get a third opinion. They clearly felt there was a survival benefit, but explained that everyone is different. They did make clear that survival chances were not good without reirradiation. They talked to us realistically and explained to us what side effects they had seen. While all of those horrible ones were possible, many were unlikely. We did reirradiation and two years later, Pat's latest PET was NED. Treatment was very tough, but Pat is doing very well now. Eats almost everything, works more than full time, enjoys his hobbies and his life. We both are afraid that the outcome would not have been this good had we not done the reirradiation.

    With Pat, we are talking about reirradiation, and he is doing well. Radiation does have side effects, but we have found them very doable considering the alternative.

    Good luck with this very difficult decision.

    Thoughts and prayers are with you.

    Myka
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    I'd Get Treatment
    For me and my opinion, I'd get the treatment....

    My reasoning, everyone is different and everyone responds differently. There are no guarantees that he only has 2 - 3 years and 20%, he could very well have many, many more years. Statistics have so many variables, especially concerning life, survival and longevity.

    So in my thinking, if the radiation helps at all, it's a good thing, and I'm one that would always travel the road that is more pro-active. Not having radiation or treatment (in my unprofessional opinion) only increases the possibility of no cure, or an accelerated spread of disease.

    Best,
    John
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #5
    My perspective
    I had the same thoughts about doing surgery post radiation and chemo 15 plus years ago. Do you want to live with the thought of maybe I should have done the radiation every time you think of if or will the cancer come back. Then have to deal with I wish I had done the radiation maybe the cancer would not have come back. Vs doing the radiation and saying I have done everything thing there is to to, keeping in mind by buying time down the road with the way treatments and research is being done there will be a cure.

    I took the surgery and am still here. Maybe I did not need it but I did use all the options and yes I have side effects that I have to deal with in my new normal life. Those become my normal and everyone is not normal. I chose to do all I could to kick cancers ****. I may or may not have have kicked it all.

    BTW I do not believe doctor's just do things just to do things, i believe they feel they are what is needed to reach the goal of long there survivorship.

    Good luck with your choice.

    John

    welcome to CSN... there is no place like this those looking for help, support and caring while waiting, fighting or surviving the war again cancer.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #6
    Skiffin16 said:

    I'd Get Treatment
    For me and my opinion, I'd get the treatment....

    My reasoning, everyone is different and everyone responds differently. There are no guarantees that he only has 2 - 3 years and 20%, he could very well have many, many more years. Statistics have so many variables, especially concerning life, survival and longevity.

    So in my thinking, if the radiation helps at all, it's a good thing, and I'm one that would always travel the road that is more pro-active. Not having radiation or treatment (in my unprofessional opinion) only increases the possibility of no cure, or an accelerated spread of disease.

    Best,
    John

    Short version
    very well put in a short version and to the point. I agree with you John
  • tesa
    tesa Member Posts: 123
    #7
    fisrpotpe said:

    My perspective
    I had the same thoughts about doing surgery post radiation and chemo 15 plus years ago. Do you want to live with the thought of maybe I should have done the radiation every time you think of if or will the cancer come back. Then have to deal with I wish I had done the radiation maybe the cancer would not have come back. Vs doing the radiation and saying I have done everything thing there is to to, keeping in mind by buying time down the road with the way treatments and research is being done there will be a cure.

    I took the surgery and am still here. Maybe I did not need it but I did use all the options and yes I have side effects that I have to deal with in my new normal life. Those become my normal and everyone is not normal. I chose to do all I could to kick cancers ****. I may or may not have have kicked it all.

    BTW I do not believe doctor's just do things just to do things, i believe they feel they are what is needed to reach the goal of long there survivorship.

    Good luck with your choice.

    John

    welcome to CSN... there is no place like this those looking for help, support and caring while waiting, fighting or surviving the war again cancer.

    I agree with Myka and
    I agree with Myka and Skiffin(John). Fight this war with all weapons available, pray and stay strong in faith. My best friend's mother was told she had 6 mos. for colon cancer that had spread and there was no use in doing the chemo. It wouldn't help and she'd have no quality of life. She begged for the chemo, prayed fervently, and 23 years later she's still alive.
    I just don't believe in giving up.

    Myka, your post just made my day! My mother is being reirradiated for her paranasal cancer. Hearing that you guys are 2 years out and NED makes me so happy for the two of you, and hopeful for my mother. I know everyone is different , but hearing stories like yours is just sweet music to my ears!!!!!!!
  • luv2cut1
    luv2cut1 Member Posts: 288
    #8
    tesa said:

    I agree with Myka and
    I agree with Myka and Skiffin(John). Fight this war with all weapons available, pray and stay strong in faith. My best friend's mother was told she had 6 mos. for colon cancer that had spread and there was no use in doing the chemo. It wouldn't help and she'd have no quality of life. She begged for the chemo, prayed fervently, and 23 years later she's still alive.
    I just don't believe in giving up.

    Myka, your post just made my day! My mother is being reirradiated for her paranasal cancer. Hearing that you guys are 2 years out and NED makes me so happy for the two of you, and hopeful for my mother. I know everyone is different , but hearing stories like yours is just sweet music to my ears!!!!!!!

    Tesa - Thinking of you and your mom
    Hi Tesa,

    I am so glad our story made you feel hopeful! Thoughts and prayers are with you and your mom during this tough journey. We look forward to hearing good news in the future.

    Please keep us posted.

    Myka
  • kellydx
    kellydx Member Posts: 3
    #9
    Loved your answers, folks!
    Awesome answers, everyone. It's great to hear from people who have "been there, done that."
  • Hondo
    Hondo Member Posts: 6,636 Member
    #10
    tesa said:

    I agree with Myka and
    I agree with Myka and Skiffin(John). Fight this war with all weapons available, pray and stay strong in faith. My best friend's mother was told she had 6 mos. for colon cancer that had spread and there was no use in doing the chemo. It wouldn't help and she'd have no quality of life. She begged for the chemo, prayed fervently, and 23 years later she's still alive.
    I just don't believe in giving up.

    Myka, your post just made my day! My mother is being reirradiated for her paranasal cancer. Hearing that you guys are 2 years out and NED makes me so happy for the two of you, and hopeful for my mother. I know everyone is different , but hearing stories like yours is just sweet music to my ears!!!!!!!

    Tesa

    I am with you never give-up, even with the odds are stacked against you. Because with our God he all ways makes a way. I like many are still praying for you and your Mom.

    ╠╣ONDO

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