Long Term affects of radiation?

Options
3X Survivor
3X Survivor Member Posts: 1
Hello,

I am preparing for radiation for the first time and am having serious doubts. I know their are people who get through radiation with minimal side effects, however many may not realize that not all radiation is the same, there are different types, different doses and their are many variables. I would like to know if anyone has had any long term side effects from radiation, particularly more than 5+ years. I've been told I have a 30% change of lymphedema, a 30% chance of my implant failing, 100% that my lung will be damaged to some degree and I am worried about future cancers, especially of the blood, like Robin Roberts was recently diagnosed with.


Love~Peace~Happiness
Tracie
«1

Comments

  • DianeBC
    DianeBC Member Posts: 3,881 Member
    Options
    I never had any doubts of
    I never had any doubts of having rads. I had a lumpectomy and then had my rad treatments. I knew that they were necessary to kill any stray cancer cells left behind from my lumpectomy and I wanted those cells killed!

    I don't have lymphedema nor any bad side effects from having rads.

    None of us can predict what our futures are inre to developing another new cancer or mets. I just know that I wanted to do whatever I could to fight bc and to be able to live my life knowing I fought bc with all that I could.

    You just decide what is best for you, that is all that matters.

    Good luck,

    Diane
  • ladyg
    ladyg Member Posts: 1,577
    Options
    Tracie
    I had 33 rad treatments and the worst side effect I have is a tan square in the area of the radiation. I do have lymphedema but that came right after my lumpectomy. In fact the nurse at the rad center was the one who first brought it to the attention of the dr. when I was in for my very first visit. I know there is always a chance of something happening but I also know that if not for the treatments I had I may not be here today.
    It is your choice to make and you have to do what is right for you.

    Hugs,
    Georgia
  • missrenee
    missrenee Member Posts: 2,136 Member
    Options
    ladyg said:

    Tracie
    I had 33 rad treatments and the worst side effect I have is a tan square in the area of the radiation. I do have lymphedema but that came right after my lumpectomy. In fact the nurse at the rad center was the one who first brought it to the attention of the dr. when I was in for my very first visit. I know there is always a chance of something happening but I also know that if not for the treatments I had I may not be here today.
    It is your choice to make and you have to do what is right for you.

    Hugs,
    Georgia

    There is risk with most any medical treatment
    But, after being diagnosed with Stage 3C breast cancer, to me, there was no choice but to accept any and all treatments available to conquer this disease. I had my chemo (six rounds of TAC) and rads (33) in 2010. I have never questioned that decision. Even though I was just diagnosed with bone mets in January of this year, I can at least say I did everything I could and am not saying "woulda, shoulda, coulda."

    I am just continuing the fight again and I will take any and all treatments offered to me again.

    Good luck in your decision.

    Hugs, Renee
  • 3cbrca
    3cbrca Member Posts: 206
    Options
    Hi Tracie
    If radiation is

    Hi Tracie

    If radiation is what is recommended then you should seriously consider it. You also may be one who doesn't get the side effects. Unfortunately we each have to make this decision without knowing whether we are the ones who will get them. The science isn't there yet to help us. The side effects rare real, but for me they were worth it.

    I didn't think much about the side effects and had all of them that you mentioned and I wouldn't change a thing! I had more than 20 pos nodes AFTER chemotherapy and didn't expect to be here long- I had much more radiation than most breast cancer patients. I wish I didn't have the side effects, but they are not limiting me in any way. Its been almost 6 years and I'm doing well.

    I already had lymphedema from surgery-and I developed more, but not serious -I have a lympehdema machine and it really only bothers me when I fly (on airplanes) or do strenuous exercise. For those activities I My lung has some damage, but I excercise and seem to have compensated. For other reasons I had delayed reconstruction and I'm glad I did because of the rad damage to the skin- my skin failed and I had it grafted and found another method of reconstruction. I too am at risk for MDS from Chemo, but it's such a small number of people who get it, that when I watched her tell her story on tv the other day, I just felt badly for her..

    I hope this doesn't scare you-but this is my reality. For me it was worth the risk and the outcome. Best to you.
  • MAJW
    MAJW Member Posts: 2,510 Member
    Options
    3cbrca said:

    Hi Tracie
    If radiation is

    Hi Tracie

    If radiation is what is recommended then you should seriously consider it. You also may be one who doesn't get the side effects. Unfortunately we each have to make this decision without knowing whether we are the ones who will get them. The science isn't there yet to help us. The side effects rare real, but for me they were worth it.

    I didn't think much about the side effects and had all of them that you mentioned and I wouldn't change a thing! I had more than 20 pos nodes AFTER chemotherapy and didn't expect to be here long- I had much more radiation than most breast cancer patients. I wish I didn't have the side effects, but they are not limiting me in any way. Its been almost 6 years and I'm doing well.

    I already had lymphedema from surgery-and I developed more, but not serious -I have a lympehdema machine and it really only bothers me when I fly (on airplanes) or do strenuous exercise. For those activities I My lung has some damage, but I excercise and seem to have compensated. For other reasons I had delayed reconstruction and I'm glad I did because of the rad damage to the skin- my skin failed and I had it grafted and found another method of reconstruction. I too am at risk for MDS from Chemo, but it's such a small number of people who get it, that when I watched her tell her story on tv the other day, I just felt badly for her..

    I hope this doesn't scare you-but this is my reality. For me it was worth the risk and the outcome. Best to you.

    My understanding...
    My understanding is Roberts "condition" is caused by the chemo she had, not radiation....it's your choice to do or not do rads...but I, personally, would have it and I did....3 times! Won't go into the details....
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    Options
    ladyg said:

    Tracie
    I had 33 rad treatments and the worst side effect I have is a tan square in the area of the radiation. I do have lymphedema but that came right after my lumpectomy. In fact the nurse at the rad center was the one who first brought it to the attention of the dr. when I was in for my very first visit. I know there is always a chance of something happening but I also know that if not for the treatments I had I may not be here today.
    It is your choice to make and you have to do what is right for you.

    Hugs,
    Georgia

    My only side effect was
    My only side effect was square tan as well..NO chapping or burning (Happy to say)

    LIKE said above different types, doses etc..

    I wish you the best..

    Denise
  • jnl
    jnl Member Posts: 3,869 Member
    Options

    My only side effect was
    My only side effect was square tan as well..NO chapping or burning (Happy to say)

    LIKE said above different types, doses etc..

    I wish you the best..

    Denise

    Tracie, I didn't have any
    Tracie, I didn't have any side effects except I did get really sore and red the last couple of weeks. Rads are very doable and I believe are a great tool in our fight with bc.

    And, I did get really exhausted so I tried to get lots and lots of sleep.

    Good luck,

    Leeza
  • RE
    RE Member Posts: 4,591 Member
    Options
    Hi Tracie, I had 80 rad
    Hi Tracie, I had 80 rad treatment and yes I do have lymphedema due to it AND the fact I had A LOT of lymph nodes removed when the lumpectomy was done. I occasionally get a pesky rash in the radiated area but nothing at all serious. I had a bit of lung damage but that has healed and is no longer an issue (RADS WERE DONE IN 1999). If I had to do it over again I most certainly would with no hesitation as I truly believe without it I very well may not be here today.

    I realize it is scary and we each have to make our own decision's when it comes to our medical plan, I wish you all the best and hope things go well for you!

    RE
  • deerello
    deerello Member Posts: 22
    Options
    Same questions
    I also posted as I am/was having serious doubts and almost decided against it. However, I think the good outweighs the bad and I have lost so much already I don't want to lose the ulimate, my life! I have heard that a lot depends on your radiation oncologist, and I guess the rest is in God's hands. Have faith that you will sail through it as I hope to do. I start in late July, and pray a year from now(or less) to have my life back. Please keep posting and Good Luck!
  • Angie2U
    Angie2U Member Posts: 2,991
    Options
    MAJW said:

    My understanding...
    My understanding is Roberts "condition" is caused by the chemo she had, not radiation....it's your choice to do or not do rads...but I, personally, would have it and I did....3 times! Won't go into the details....

    Robin Roberts blamed the
    Robin Roberts blamed the chemo for her fight now. I would do rads again if I needed to. I had the redness and soreness, but, it goes away very quickly when you finish.

    Good luck,

    Angie
  • jendrey
    jendrey Member Posts: 377
    Options
    deerello said:

    Same questions
    I also posted as I am/was having serious doubts and almost decided against it. However, I think the good outweighs the bad and I have lost so much already I don't want to lose the ulimate, my life! I have heard that a lot depends on your radiation oncologist, and I guess the rest is in God's hands. Have faith that you will sail through it as I hope to do. I start in late July, and pray a year from now(or less) to have my life back. Please keep posting and Good Luck!

    ...
    Like you, I very much wanted to know the long term effects of radiation therapy. Unfortunately, all the doctor would say was that I might get a sunburn effect in the area.

    He seemed quite surprised when I told him that was a short term effect.

    Anyhoo, (besides the 'sunburn') one of my ribs has a fracture that still hurts on occasion even though it's been months since it happened. I've had numerous complications with my implant due to my skin not being able to well, act like skin. It seems like the skin/tissue in the radiated area is somehow dead - if that makes any sense. It's not at all pliable and just about impossible to heal in any timely manner.

    About a month or so ago, my implant became contaminated and thus was replaced. It took a few weeks to finally look closed. I say look closed because it got ripped about a third of the way open exposing the Alloderm and still isn't closed now going on about 7 weeks. Radiation therapy ended about a year ago. Except for the wound eventualy closing, I don't imagine anything improving much in the future.

    I don't even see the radiation doctor any more because ommision of facts of possible complications like these is just about on par with lying as far as I'm concerned. But that's just my own take on the matter. Then again, this is the same doctor that told me my mastecomy was unnecessary. I'm probably better off just not dealing with him altogether!

    I do realize that he could not predict I would have complications with my implant. However, it is because of the effect of the radiation to my skin/tissue that I am having all these complications. And THAT he could have very well predicted as an outcome. Yet he elected to omit telling me anything whatsoever regarding any late term effects.

    I wish I'd found this informative webpage to read before:

    http://www.nature.com/jid/journal/v132/n3-2/full/jid2011411a.html

    The actual treatments were pleasant enough and the weeks seemed to go by quickly. It seems the staff at radiation therapy centers are always the nicest. They were at the one I went to as well as two others that friends went to.

    Only you can decide if the benefit is worth the risk to you personally.

    (((Hugs)))
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    Options
    Do it again?
    Yuppers would be my answer. I would despite the fact that I have lymphedema. The chances of gettting lymphedema increase from radiation. However, I have found that even the lymphedema has little effect on my life. If that is the worst outcome of it then I figure No big deal.
  • Alexis F
    Alexis F Member Posts: 3,598
    Options
    deerello said:

    Same questions
    I also posted as I am/was having serious doubts and almost decided against it. However, I think the good outweighs the bad and I have lost so much already I don't want to lose the ulimate, my life! I have heard that a lot depends on your radiation oncologist, and I guess the rest is in God's hands. Have faith that you will sail through it as I hope to do. I start in late July, and pray a year from now(or less) to have my life back. Please keep posting and Good Luck!

    If I ever got diagnosed
    If I ever got diagnosed again with cancer and had to do rads, I sure would. I wouldn't want to leave anything to chance and then wonder..what if?

    We are all different and therefore react differently to rads, but, the main thing is that they do kill leftover cancer cells.

    Good luck and God bless you,


    Lex
  • Rague
    Rague Member Posts: 3,653 Member
    Options

    Do it again?
    Yuppers would be my answer. I would despite the fact that I have lymphedema. The chances of gettting lymphedema increase from radiation. However, I have found that even the lymphedema has little effect on my life. If that is the worst outcome of it then I figure No big deal.

    I deal with LE too - but I
    I deal with LE too - but I will not allow it to stop me from doing any and every thing I WANT to do. I'm alive and intend to live every day to it's utmost. Yes LE is at the least an 'inconvience' (wearing day and night garments/MLD machine) but definately 'handleable' for me. Recently I did a 10K Volksmarch up to Crazy Horse's arm at the Memorial. Learned that with LE it 's a good idea to use a walking stick on that side to elevate it. I didn't think about it and did wind up with a bit more LE but met a great lady who talked stopped to talk to me about it. Her Hubby also talked with my Hubby and he's decided to get me a nice adjustable stick before next year. When you think about it makes sense. Tuesday I mowed about 2 1/2 acres of weeds with a 20" push power mower.

    Certainly there are many who would not want to do either - but LE does not stop you from doing what you want to do. It is manageable.

    Back to the OP - Long Term Effects of Radiation - my first radiation was in 1947 after my tonsils were taken out (a common practice until in the 1960's). The radiation of that time was not as 'good" as it is today. I've had to have my thyroid checked all my life because of the radiation then. My Drs also say it may have contributed to my IBC. Don't know - never will BUT I do not regret my rads and would do again.

    Winyan - The Power Within

    Susan
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    Options
    Rague said:

    I deal with LE too - but I
    I deal with LE too - but I will not allow it to stop me from doing any and every thing I WANT to do. I'm alive and intend to live every day to it's utmost. Yes LE is at the least an 'inconvience' (wearing day and night garments/MLD machine) but definately 'handleable' for me. Recently I did a 10K Volksmarch up to Crazy Horse's arm at the Memorial. Learned that with LE it 's a good idea to use a walking stick on that side to elevate it. I didn't think about it and did wind up with a bit more LE but met a great lady who talked stopped to talk to me about it. Her Hubby also talked with my Hubby and he's decided to get me a nice adjustable stick before next year. When you think about it makes sense. Tuesday I mowed about 2 1/2 acres of weeds with a 20" push power mower.

    Certainly there are many who would not want to do either - but LE does not stop you from doing what you want to do. It is manageable.

    Back to the OP - Long Term Effects of Radiation - my first radiation was in 1947 after my tonsils were taken out (a common practice until in the 1960's). The radiation of that time was not as 'good" as it is today. I've had to have my thyroid checked all my life because of the radiation then. My Drs also say it may have contributed to my IBC. Don't know - never will BUT I do not regret my rads and would do again.

    Winyan - The Power Within

    Susan

    I doubt that we will ever
    I doubt that we will ever know any long term side effects of any of our treatments, but, when we are fighting for our lives, I think we want to do all that we can in regards to treatment, to save ourselves.

    There are so many variables to rads, some facilities have old machines, some people burn, some have no side effects, some people get exhausted..just so many different variables.

    Only you and you alone can choose what you want to do in regards to rads or anything else that your oncologist and rads oncologist recommend.

    Be informed, feel secure in your choice and then do what you wish.

    There is no right or wrong, just what you feel is best.


    Good luck to you,


    Jan
  • jnl
    jnl Member Posts: 3,869 Member
    Options
    deerello said:

    Same questions
    I also posted as I am/was having serious doubts and almost decided against it. However, I think the good outweighs the bad and I have lost so much already I don't want to lose the ulimate, my life! I have heard that a lot depends on your radiation oncologist, and I guess the rest is in God's hands. Have faith that you will sail through it as I hope to do. I start in late July, and pray a year from now(or less) to have my life back. Please keep posting and Good Luck!

    I think someone else already
    I think someone else already wrote this but from what Robin Roberts said in her interview, she says it was the chemo that did this. I don't know if her doctors confirmed or told her this, but, I would assume they did.

    How are you doing? Have you decided yet?


    Leeza
  • NancyJac
    NancyJac Member Posts: 91
    Options
    None of that after 18 years
    I am currently in my second go round with rads. First time was 18 years ago. I've had no lymphedema. I don't have implants so nothing to fail there. And no lung damage. I did have a subsequent DX of IBC, but all my docs agree that was neither a recurrence of my previous cancer nor the result of previous rads. What is the basis for being told there is 100% certainty of lung damage? Are they not doing breath hold? That protects the heart and lungs during rads. At least that is what I was told.
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    Options
    NancyJac said:

    None of that after 18 years
    I am currently in my second go round with rads. First time was 18 years ago. I've had no lymphedema. I don't have implants so nothing to fail there. And no lung damage. I did have a subsequent DX of IBC, but all my docs agree that was neither a recurrence of my previous cancer nor the result of previous rads. What is the basis for being told there is 100% certainty of lung damage? Are they not doing breath hold? That protects the heart and lungs during rads. At least that is what I was told.

    I had rads and would do it
    I had rads and would do it again in a minute if necessary. I don't have lymphedema or any side effects from rads. I don't even have the tan line that some talk about as the machine my cancer center used was brand new and that just doesn't happen with the newer machines.

    I wish you the best!
  • MAJW
    MAJW Member Posts: 2,510 Member
    Options
    DianeBC said:

    I had rads and would do it
    I had rads and would do it again in a minute if necessary. I don't have lymphedema or any side effects from rads. I don't even have the tan line that some talk about as the machine my cancer center used was brand new and that just doesn't happen with the newer machines.

    I wish you the best!

    I had...
    I had to sign papers before starting radiation...I bet everyone did....I took my time reading them....the rads onco actually left the room for about 15 minutes while my husband and I read over the possible side effects...I won't kid you, I'm sure we didn't absorb it all...but I needed it...I've now had rads 3 times.....the last was 10 brain rads...talk about side effects! Other than extreme fatigue.I simply adore my RO ...he was always been very up front with us and spends quality time explaing everything...I hope I've seen the last of him, in a medical setting..I'd do it all again!
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    Options
    MAJW said:

    I had...
    I had to sign papers before starting radiation...I bet everyone did....I took my time reading them....the rads onco actually left the room for about 15 minutes while my husband and I read over the possible side effects...I won't kid you, I'm sure we didn't absorb it all...but I needed it...I've now had rads 3 times.....the last was 10 brain rads...talk about side effects! Other than extreme fatigue.I simply adore my RO ...he was always been very up front with us and spends quality time explaing everything...I hope I've seen the last of him, in a medical setting..I'd do it all again!

    I had minimal side effects
    I had minimal side effects with rads. I was tired, got red, was tender and even had a little rash, but, my rads oncologist took care of everything for me with creams. I saw him at least twice a week for him to keep checking my skin. I would do rads again in a minute if needed.

    ♥ Kristin ♥