Rads

dotty4577
dotty4577 Member Posts: 7
in Head and Neck Cancer #1
Are there SCC's who has chosen no radiation following resection of hard palate or submandibular or other parts of the head, neck, mouth etc.w/good results? Should it always be done? Ramifications if you choose only to have the cancer removed?

Dotty

Comments

  • Fire34
    Fire34 Member Posts: 365
    #2
    Full Monty Here
    Dot
    You have not mentioned whether you have had any chemo yet? I would go for the rads and chemo as there is no way of knowing for sure if they have removed all of the tumor or there might be little straglers left that might cause problems in the future.The chemo wold take care of any cells that might be in your system form the surgery also. I under went eight weeks of induction chemo and 5 alternating weeks of twice daily rads with concurrent chemo. I did not recive surgery as it was the option of last choice where I was treated. My vote is rads & chemo, which I am sure others more knowledgeable than me will concur.
    Wishes & Prayers on whichever path you choose
    Dave
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    How Lucky Do You Feel...
    From your other post, it doesn't look like you've had rads or chemo.....

    Like Dave, I had both....sixteen weeks total for four different types of chemo, seven of those with 35 daily rad sessions.

    My ENT adviced me to get both the chemo and the concurrent chemo/rads. He says that some have refused, but against his advice.

    Myself, I put my life in his hands and so far over 2 1/2 years, it's paid off with clean scans and no evidense of disease remaining.

    Best,
    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
    dotty, i will share with you
    dotty, i will share with you a thread that was posted a while back. i typed my answer there, and it would still be the answer i would give today.

    the ramifications of only having the cancer removed would be that they did not get it all, and that it will come back worse, and could lead to death.

    you need to weigh risk vs reward, as in all things. i chose not to do chemo, despite my radiologist oncologist's urgings. i am happy with that decision. i did do radiation, which was extremely difficult for me. some folks have an easier time than others, but it is never a cake walk for sure.

    SHOULD I DO RADIATION
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Hi Dotty
    I am six years out of treatment still here and doing well. You can have only the cancer removed but what if, is the problem. As in my case and many others here if they got it all we were be ok but if not why go through this again. To me explore all your options and get a second opinions from a major cancer institution and go by there recommendations. It is hard but you will like all of us come through it and become a survivor.

    Wishing you well in your choice
    Hondo
  • Goalie
    Goalie Member Posts: 184
    #6
    Hondo said:

    Hi Dotty
    I am six years out of treatment still here and doing well. You can have only the cancer removed but what if, is the problem. As in my case and many others here if they got it all we were be ok but if not why go through this again. To me explore all your options and get a second opinions from a major cancer institution and go by there recommendations. It is hard but you will like all of us come through it and become a survivor.

    Wishing you well in your choice
    Hondo

    With the others
    I am sure that my earlier responses are in the thread that Dawn links to. But I have no doubts at all that we made the right decision to get rads and chemo along with the operation(s). The short-term effects are no fun, I grant you. But the long-term effects are not that bad and far outweigh what would be unending gnawing doubts about whether or not we got every one of the da** cancer cells floating around. To say nothing of death. I am so glad we hit it with everything we could and greatly upped the chances I will see my kids all grow up.

    And that's my two cents. Doug
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #7
    Goalie said:

    With the others
    I am sure that my earlier responses are in the thread that Dawn links to. But I have no doubts at all that we made the right decision to get rads and chemo along with the operation(s). The short-term effects are no fun, I grant you. But the long-term effects are not that bad and far outweigh what would be unending gnawing doubts about whether or not we got every one of the da** cancer cells floating around. To say nothing of death. I am so glad we hit it with everything we could and greatly upped the chances I will see my kids all grow up.

    And that's my two cents. Doug

    Ditto
    To Dave/Fire34's post, as well as the others. Drs that know the specifics are the ones with the best opinion, of course, but the better safe than sorry is a wise route.

    kcass
  • dotty4577
    dotty4577 Member Posts: 7
    #8
    Skiffin16 said:

    How Lucky Do You Feel...
    From your other post, it doesn't look like you've had rads or chemo.....

    Like Dave, I had both....sixteen weeks total for four different types of chemo, seven of those with 35 daily rad sessions.

    My ENT adviced me to get both the chemo and the concurrent chemo/rads. He says that some have refused, but against his advice.

    Myself, I put my life in his hands and so far over 2 1/2 years, it's paid off with clean scans and no evidense of disease remaining.

    Best,
    John

    You are right Skiffin
    Right Skiffin,

    I have not had either (Rads nor Chemo) and I do not want to. Mentally, I am not prepare. Physically, I feel good (with the exception of trying to adjust to the Orator), Psychologically, my 'gut' (where GOD speaks) says NO, but, I admit, so does my fear. I have been reading many of the post and I must admit, I do not know if i want to live with the ramifications of the side affects of rads or chemo. Life is WONDERFUL but the quality my life and how I live my life is vital, I am a Wonderful people person, I love to sing and dance, interact with others. It's how I learn and how I teach. I just want to live life to the fullest by GOD's grace. Quality is more important than quantity.

    Dotty
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    dotty4577 said:

    You are right Skiffin
    Right Skiffin,

    I have not had either (Rads nor Chemo) and I do not want to. Mentally, I am not prepare. Physically, I feel good (with the exception of trying to adjust to the Orator), Psychologically, my 'gut' (where GOD speaks) says NO, but, I admit, so does my fear. I have been reading many of the post and I must admit, I do not know if i want to live with the ramifications of the side affects of rads or chemo. Life is WONDERFUL but the quality my life and how I live my life is vital, I am a Wonderful people person, I love to sing and dance, interact with others. It's how I learn and how I teach. I just want to live life to the fullest by GOD's grace. Quality is more important than quantity.

    Dotty

    Dotty, I can certainly repsect your decisions...

    But, for me actually little has changed....

    Yes, I went trhough a period where I lost my taste and saliva, went through the gamut of other side effects. But have regained nearly all of the taste and saliva.

    I'm 57, still on no meds other than occasional Protonix for acid reflux...my blood pressure and cholesterol are good...

    My thyroid is taking a hit, but not on meds for that yet. My teeth are all still good so at this time that's not a problem also.

    I know a few here have had it a lot worse than me, but many also have a very good quality of life.

    Myself, even if I had to take a hit on quality of life...at least I still have one. I don't think I'd probably still be here today if I didn't have the treatments...

    Again, your decisions are yours alone....

    Best,
    John
  • dotty4577
    dotty4577 Member Posts: 7
    #10
    sweetblood22 said:

    dotty, i will share with you
    dotty, i will share with you a thread that was posted a while back. i typed my answer there, and it would still be the answer i would give today.

    the ramifications of only having the cancer removed would be that they did not get it all, and that it will come back worse, and could lead to death.

    you need to weigh risk vs reward, as in all things. i chose not to do chemo, despite my radiologist oncologist's urgings. i am happy with that decision. i did do radiation, which was extremely difficult for me. some folks have an easier time than others, but it is never a cake walk for sure.

    SHOULD I DO RADIATION

    You are AWESOME
    Sweetblood22,

    You are an AWESOME person sweetblood. My questioon is, why do your specialist tell you that "he got it all" and there is no remaining cancer, if there is? Sounds like with many of us (SCC's) It keeps returning anyway. YES? Many of us go through HELL healing, only to endure more Hell (sores,blissters, PEG's, lost of salava glands, no taste, dry mouth,swallowing difficulty, matastasis happens anyway. I just do not want to live from the doctors offices to the bed at home, living and hoping I feel better. I know that it is different for each of us. Sweetblood, at this moment in time -I'M GOOD- but, I know my thinking alone does not suffice.

    Love & Hugs
    Dot I
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    dotty4577 said:

    You are AWESOME
    Sweetblood22,

    You are an AWESOME person sweetblood. My questioon is, why do your specialist tell you that "he got it all" and there is no remaining cancer, if there is? Sounds like with many of us (SCC's) It keeps returning anyway. YES? Many of us go through HELL healing, only to endure more Hell (sores,blissters, PEG's, lost of salava glands, no taste, dry mouth,swallowing difficulty, matastasis happens anyway. I just do not want to live from the doctors offices to the bed at home, living and hoping I feel better. I know that it is different for each of us. Sweetblood, at this moment in time -I'M GOOD- but, I know my thinking alone does not suffice.

    Love & Hugs
    Dot I

    Dotty, I personally don't
    Dotty, I personally don't know what your MD's said or at what point.... I'd find it hard to think that a MD would make those comments to you. Especially so early in treatment...again, I'm not a medical professional by any means and do not mean to seem I know more than your MD's, I don't.

    But also, overall, I don't see it happening concerning your comment that we all have recurrence. That simple is not the case majority wise, some do, most do not.

    The side effects you mention above usually are only temporary in whole, a large majority get much of those back.

    Anyways, again...your decisions always.

    Thoughts & Prayers,
    John
  • dotty4577
    dotty4577 Member Posts: 7
    #12
    Hondo said:

    Hi Dotty
    I am six years out of treatment still here and doing well. You can have only the cancer removed but what if, is the problem. As in my case and many others here if they got it all we were be ok but if not why go through this again. To me explore all your options and get a second opinions from a major cancer institution and go by there recommendations. It is hard but you will like all of us come through it and become a survivor.

    Wishing you well in your choice
    Hondo

    WOW!
    WOW Hondo,

    I've read many of your post and YOU ARE truely one of MY HERO's. I am set up to get a second opinion at UCSF on 9/14/11. I am almost six months out from getting surgery and I'm feeling good, dancing, working w/children, out and about living and loving life with a new 'attitude.' At this point I just feel like I Would be putting myself back into the 'sickbed' by getting 'rads' this far OUT. I do not want to regret it later. The 'real' truth is looking at the history of SCC's is its complexity and rareness of the disease.

    Hugs
    Dotty
  • dotty4577
    dotty4577 Member Posts: 7
    #13
    Skiffin16 said:

    Dotty, I personally don't
    Dotty, I personally don't know what your MD's said or at what point.... I'd find it hard to think that a MD would make those comments to you. Especially so early in treatment...again, I'm not a medical professional by any means and do not mean to seem I know more than your MD's, I don't.

    But also, overall, I don't see it happening concerning your comment that we all have recurrence. That simple is not the case majority wise, some do, most do not.

    The side effects you mention above usually are only temporary in whole, a large majority get much of those back.

    Anyways, again...your decisions always.

    Thoughts & Prayers,
    John

    Skiffin I appreciate you
    skiffin16,

    Your recovery is great! and you are getting better and better. I LOVE IT! It was my cancer surgeon at UCSF who told me after the sugery he'd gotten it All. He still recommended rads. In the interim more lumps were found in my neck and a massive mass on my thyroid. The radiologist at another hospital began probing those lumps to r/o malignancies. Even though they were found to be negative.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #14
    dotty4577 said:

    WOW!
    WOW Hondo,

    I've read many of your post and YOU ARE truely one of MY HERO's. I am set up to get a second opinion at UCSF on 9/14/11. I am almost six months out from getting surgery and I'm feeling good, dancing, working w/children, out and about living and loving life with a new 'attitude.' At this point I just feel like I Would be putting myself back into the 'sickbed' by getting 'rads' this far OUT. I do not want to regret it later. The 'real' truth is looking at the history of SCC's is its complexity and rareness of the disease.

    Hugs
    Dotty

    Hi Dotty
    We are just one big family and you are now part of that family. I am glad you are getting the second opinion I believe you made the right choice.

    Wishing you well and keeping you in prayer
    Hondo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #15
    dotty4577 said:

    You are AWESOME
    Sweetblood22,

    You are an AWESOME person sweetblood. My questioon is, why do your specialist tell you that "he got it all" and there is no remaining cancer, if there is? Sounds like with many of us (SCC's) It keeps returning anyway. YES? Many of us go through HELL healing, only to endure more Hell (sores,blissters, PEG's, lost of salava glands, no taste, dry mouth,swallowing difficulty, matastasis happens anyway. I just do not want to live from the doctors offices to the bed at home, living and hoping I feel better. I know that it is different for each of us. Sweetblood, at this moment in time -I'M GOOD- but, I know my thinking alone does not suffice.

    Love & Hugs
    Dot I

    Dotty
    My doctors never told me that they ''got it all". I was told that I had clean margins. My primary was also never found. I felt I needed additional treatment. I am not going to say it was an easy decision. It wasn't. Especially because of my very rare genetic blood disorder that I also have. I refused chemo and I did radiation knowing that the odds were that more fanconi anemia patients have died than lived when doing radiation. I am not going to lie, it was grueling for me, but I made it. I look at it this way, quality of life is fine, but dying from cancer is a horrible death and I would rather go down fighting, at least with the first time, I'm gonna die trying. Just my opinion.

    I used to sing second soprano in two choirs, I loved it. Now I can no longer sing. It sucks, but it is what it is. I am grateful for the things I did regain. I still have the ability to listen to beautiful music, can't listen to tunes if your pushing up daisies.

    Whatever you decide, I wish you well.

    Blessings~
    sweets
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #16
    Hi Dotty
    I agree with the others who have replied here. I went through the rads/chemo and don't regret it for a single moment.

    If you're intent on beating this beast, why stop half way through treatment? Yes there is a chance of recurrence even with the chemo/rads, but that is not necessarily a given. And certainly the chemo/rads treatment is no picnic. As John put it, most of the side effects are usually temporary.

    I am 1 year out from treatment and my quality of life is pretty much the same as it was pre-cancer. If faced with the same circumstances again, I would opt for the chemo/rads treatment in a heartbeat.

    At the end of the day, the final decision is yours Dotty. Get that 2nd opinion, a 3rd if needed. Be comfortable in whatever decision you make. I hope you will not one day 'regret' the decision to decline the chemo/rads treatment. Cheers.

    Jimbo
  • Debi16043
    Debi16043 Member Posts: 53
    #17
    Skiffin16 said:

    Dotty, I can certainly repsect your decisions...

    But, for me actually little has changed....

    Yes, I went trhough a period where I lost my taste and saliva, went through the gamut of other side effects. But have regained nearly all of the taste and saliva.

    I'm 57, still on no meds other than occasional Protonix for acid reflux...my blood pressure and cholesterol are good...

    My thyroid is taking a hit, but not on meds for that yet. My teeth are all still good so at this time that's not a problem also.

    I know a few here have had it a lot worse than me, but many also have a very good quality of life.

    Myself, even if I had to take a hit on quality of life...at least I still have one. I don't think I'd probably still be here today if I didn't have the treatments...

    Again, your decisions are yours alone....

    Best,
    John

    Radiation side effect after treatment
    I finished 6 weeks radiation treatment for jaw cancer and am now 2weeks past radiation treatments and am living on Mel offs protein shakes and chicken noodle soup, minus the chicken. I am having hard time. No appetite and everything taste too salty or bad. Any suggestions?

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