Radiation or not?

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madsters1
madsters1 Member Posts: 120
I have probably a ridiculous question, here goes.
Has anyone opted to NOT have radiation? I have and will coninue to question everything they recommend. There are no guarantees either way. Darned of ya do and darned if ya don't. I dread the thought of laying on that table exposed every day for six weeks. And even more so I dread the thought of burning. The therapists are minimalizing the burn possibilities saying it will be like a slight sunburn. I have read on these posts from women who have gone through it and many are saying it was a bad burn. I want ( and took) a break from doctors, treatment and the cancer nightmare. Don't know if I'll go back after the break though. What do you all think?
IDC ER+, PR-, HER2-, Stage II, grade 2, age 48.

Comments

  • Nana C.
    Nana C. Member Posts: 108
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    I did not burn
    Dear Madsters,
    Everybody reacts different to treatments. My skin color changed to a light pink, felt like a mild sun burn. I didn't have blisters or peel or have any of the other pain that some of our sisters have had. The staff at the center I went to were awesome and let me lay my blouse over the area that was not getting radiation. The only surprise I had after the radiation was the pink area on my back. That really freaked me out for a little while.

    I never considered not having the treatments or seeing the doctors as recommended, but all that running around made me crazy at time. Beleive me, there have been tiems when I want to take a brake from the tamifin though! My dx was almost the same as yours.

    I will be praying that you are at peace with whatever choice you make, it is your body and you have the right to decide what is best for you.

    Hugs,
    Nana C.
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
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    I think you should do
    I think you should do whatever is right for you. None of us have that proverbial crystal ball. If we only knew for sure....

    Whatever you decide, you have our support.

    Hugs,

    Linda
  • MAJW
    MAJW Member Posts: 2,510 Member
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    I think you should do
    I think you should do whatever is right for you. None of us have that proverbial crystal ball. If we only knew for sure....

    Whatever you decide, you have our support.

    Hugs,

    Linda

    Why Not?
    Obviously, the decision is yours.......I have had Rads twice, first was after chemo,in 2009 and this past September...I, too was stage IIa IDC...my bc came back in my lymph nodes...I never burned either time...I used the creams my radiologist gave me, FAITHFULLY...carried it in my purse and applied it immediately after each treatment before putting on my top then three more times during the day...I was never "exposed" on the table...the techs were ever so concerned about my dignity and comfort...the biggest "pain" i had was going 5 days a week...I wanted no regrets down the road...and even though I did all I could to prevent the beast from coming back but it did...you're correct, there is no guarantee...now I'm just trying to stay stable..cancer is a sneaky thing...

    As Linda said we will support your decision....keep us posted, we care...
    Hugs, Nancy
  • 24242
    24242 Member Posts: 1,398
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    It does get better
    I believe the reason I am still here after surviving stage 3 IDC with 11 out of 21 positive nodes and I was very ill at the time and couldn't imagine setting myself up for more nausea and discomfort but I am certainly glad I decided to go through with it.
    I read all the literature on the drugs so knew well what to expect but somehow I found the strength to resign myself to it and 15 years later I am alive and doing things I never thought would be possible after my double mastectomy and treatments.
    I had been sick since I was 21 or 22 looking back on my life and wasn't diagnosed with cancer until I was 36. I have had allot of years of nausea and pain but today my world is getting better and I am so very grateful for that.
    WE all have to make the choice and it isn't easy sometimes but often it is interdependant on our health at that moment as well. It took years to get over all the treatments but I am a very tiny percentage of the population that suffers most of the side affects. There are plenty of things one can do to help treat the affects of treatments and it is all doable.
    I think if you look on this site more for survivors than those of us suffering you will find there are many more who get through with little or no proglems.
    Just my thought
    Tara
  • ManWithaMission
    ManWithaMission Member Posts: 497
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    No Ridiculous Questions Here
    Dear madsters1, there are no ridiculous questions here. What you are going through right now IS scary and your fears are very real to you. But don't let other peoples "horror" stories about chemo or radiation effect your decisions about contiuing your treatment or not. You will make better choices if you are forearmed with information about what to expect with certian types of treatments.

    Each person reacts differantly to their own treatments. Some people do get burned with radiation treatments and some don't. It depends on the dose you are given and the duration of the treatments. Yes, I did have a very bad burn with my radiation treatments, but I really had no choice, it was this or death! I chose to live and go through treatments. It worked for three years before the "beast" came back in my bones. I still choose to fight! Yes, we have had more that our share of ladies on this board who went through treatments and still ended up losing their battle to this "beast". Their are no guarantees in life.

    Again, it is your choice as to your treatments and your decisions to continue or not. No one can tell you it won't be hard on you and your family, but is it worth it? I think it is. All of us here are behind you 100% and will give you whatever support you need when you need it. So ask all the questions you want to, no matter what the answers are. We were all afraid of this at one time,too. These fears will pass with help from others who have gone through this also.

    Best wishes to you with your decisions.
    Robert
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
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    I had no side effects at
    I had no side effects at all...NO fatigue, burn, chapping NOT even tired. I worked full time, went on my lunch..after work daily I went to friends' Mom's house and packed 30 yrs of STUFF alone. (took me about 2 wks). I only got a slight Square tan on my chest. It kind of surprised me since I THOUGHT IN MY Little mind...it was like a BEAM of light to one tiny spot not whole half of chest...goofy me..

    We all have to do what is best for US!. There is no right or wrong answer...

    Best of luck...

    Denise
  • MsGebby
    MsGebby Member Posts: 659
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    HI
    I think you posted on one of my posts about radiation. Like everyone else who read your post, I believe the answer can only come from you. YOU have the power to make intelligent decisions and personal decisions. I have to ask if you had the Oncotype DX test done. At least having that one test can give you some guidance about where you want to go. I had the test because my oncologist wanted to start me on chemo the very first day I saw her. I was determined NOT to have to go through that and asked if there was a way to tell if it could be side stepped. I am glad I did get this test. My chance of recurrence is low. Even with this knowledge, I took the road to radiation as an insurance policy. I have 6 treatments left and can't wait for it to be over.

    As you read in my posts, I did burn. But I've learned that most folks do not burn. I was prescribed a sulfate cream that worked on those burns so well, my skin only looks pink now. I started the cream 2 weeks ago.

    If you are scared of this happening, discuss it with your doctor. Honestly, for me, the hardest part of radiation is getting my body there EVERYDAY. Making myself get ready and walk out the door was/is a chore. But there is a light at the end of the tunnel.

    Radiation has it's pros and cons. I am sure you are reading and educating yourself. The decision to do the radiation or not should be discussed with your doctor. Trust me ... the doctors only want to help.

    God Bless ... keep us informed.

    Mary

    PS --- my diagnosis is almost exactly like yours except I am PR+ as well.
  • Lorianna
    Lorianna Member Posts: 7
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    For me, radiation was the easiest part. Go for it!
    I could feel the frustration in your post, and can really realate. I questioned everything throughout my treatment as well, which did not make me popular with my oncologist, et.al. As it was explained to me, I could either do a total mastectomy and no radiation, or a lumpectomy plus radiation. I chose the latter, because the survival statistics are better and I sure as heck do not want to go through this again. After 14 rounds of chemo and just about every chemo side effect in the book, the radiation treatments were a breeze--just mild skin discomfort, no burns. I was given Aqua-Phor samples, which I used religiously. I had 20 treatments, five days / week for four weeks; skin was a bit tender and pink (then tan) but no burns. And here is another question to ask your medical providers: I was treated at M.D. Anderson in Texas, who presumably know what they are doing; they just recently went to four weeks radiation as opposed to six weeks, based on two large studies, one in the England and one in Canada, that showed no difference in survival rates. I'm sure the shorter four weeks helped to minimize skin problems. Each painless actual treatment took 5 - 10 minutes; it took longer to get undressed and dressed than it took to get the treatment. Good luck with whatever you decide.
  • sdukowitz
    sdukowitz Member Posts: 250
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    radiation questions
    Only you can make that decision. I was told by one dr. I should definietly have them, then another one said, probably not needed, since was stage zero, then the Medical Oncologist said definitely yes, as it would cut the chance of recurrence in half. So I did the "Canadian" version, since I had to fly every day to the treatment center. This was only about 4 weeks, vs. 6-8 weeks, and I had no problems, I used Aquafor every day after treatments, which were very short, only under a machine for a few minutes and no pain or anything. You might ask about the shortened version . . . My final decision was that I could not live with myself if my cancer recurred and I had chosen no radiation . . . . at least I can say I tried the radiation, even if it does recur . . .
    Really wasn't bad for me at all, but then again, I had to fly back and forth every day into Anchorage for treatments and that, plus the cabs, were the worst part for me . . .rad appts were done in less than 10-15 mins. each time . . .but again, each treatment and person is individual . . . best wishes . . . hang in there . . . .
  • sdukowitz
    sdukowitz Member Posts: 250
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    radiation questions
    Only you can make that decision. I was told by one dr. I should definietly have them, then another one said, probably not needed, since was stage zero, then the Medical Oncologist said definitely yes, as it would cut the chance of recurrence in half. So I did the "Canadian" version, since I had to fly every day to the treatment center. This was only about 4 weeks, vs. 6-8 weeks, and I had no problems, I used Aquafor every day after treatments, which were very short, only under a machine for a few minutes and no pain or anything. You might ask about the shortened version . . . My final decision was that I could not live with myself if my cancer recurred and I had chosen no radiation . . . . at least I can say I tried the radiation, even if it does recur . . .
    Really wasn't bad for me at all, but then again, I had to fly back and forth every day into Anchorage for treatments and that, plus the cabs, were the worst part for me . . .rad appts were done in less than 10-15 mins. each time . . .but again, each treatment and person is individual . . . best wishes . . . hang in there . . . .
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
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    sdukowitz said:

    radiation questions
    Only you can make that decision. I was told by one dr. I should definietly have them, then another one said, probably not needed, since was stage zero, then the Medical Oncologist said definitely yes, as it would cut the chance of recurrence in half. So I did the "Canadian" version, since I had to fly every day to the treatment center. This was only about 4 weeks, vs. 6-8 weeks, and I had no problems, I used Aquafor every day after treatments, which were very short, only under a machine for a few minutes and no pain or anything. You might ask about the shortened version . . . My final decision was that I could not live with myself if my cancer recurred and I had chosen no radiation . . . . at least I can say I tried the radiation, even if it does recur . . .
    Really wasn't bad for me at all, but then again, I had to fly back and forth every day into Anchorage for treatments and that, plus the cabs, were the worst part for me . . .rad appts were done in less than 10-15 mins. each time . . .but again, each treatment and person is individual . . . best wishes . . . hang in there . . . .

    sdukowitz
    I was also stage 0.I was told by the surgeon no chemo or radiation.I questioned it but my family doctor and my oncologist said it was OK.My tumor was 1/2 centimeter.I didn't want alot of radiation but just some. Not as much as those with invasive cancer.Reading your post does make me feel uncertain.

    My friend had radiation after chemo.She said it was breeze compared to chemo but did have some burns/redness.
  • Megan M
    Megan M Member Posts: 3,000
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    MAJW said:

    Why Not?
    Obviously, the decision is yours.......I have had Rads twice, first was after chemo,in 2009 and this past September...I, too was stage IIa IDC...my bc came back in my lymph nodes...I never burned either time...I used the creams my radiologist gave me, FAITHFULLY...carried it in my purse and applied it immediately after each treatment before putting on my top then three more times during the day...I was never "exposed" on the table...the techs were ever so concerned about my dignity and comfort...the biggest "pain" i had was going 5 days a week...I wanted no regrets down the road...and even though I did all I could to prevent the beast from coming back but it did...you're correct, there is no guarantee...now I'm just trying to stay stable..cancer is a sneaky thing...

    As Linda said we will support your decision....keep us posted, we care...
    Hugs, Nancy

    Your decision
    Like the other pink sisters stated, this is your decision to make. I had rads after my lumpectomy and it wasn't easy, but, it was worth it to kill any stray cancer cells. I didn't want to not have it and always wonder incase I were to have a recurrence.

    I wish you the best of luck and keep us posted.


    Hugs, Megan
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
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    MsGebby said:

    HI
    I think you posted on one of my posts about radiation. Like everyone else who read your post, I believe the answer can only come from you. YOU have the power to make intelligent decisions and personal decisions. I have to ask if you had the Oncotype DX test done. At least having that one test can give you some guidance about where you want to go. I had the test because my oncologist wanted to start me on chemo the very first day I saw her. I was determined NOT to have to go through that and asked if there was a way to tell if it could be side stepped. I am glad I did get this test. My chance of recurrence is low. Even with this knowledge, I took the road to radiation as an insurance policy. I have 6 treatments left and can't wait for it to be over.

    As you read in my posts, I did burn. But I've learned that most folks do not burn. I was prescribed a sulfate cream that worked on those burns so well, my skin only looks pink now. I started the cream 2 weeks ago.

    If you are scared of this happening, discuss it with your doctor. Honestly, for me, the hardest part of radiation is getting my body there EVERYDAY. Making myself get ready and walk out the door was/is a chore. But there is a light at the end of the tunnel.

    Radiation has it's pros and cons. I am sure you are reading and educating yourself. The decision to do the radiation or not should be discussed with your doctor. Trust me ... the doctors only want to help.

    God Bless ... keep us informed.

    Mary

    PS --- my diagnosis is almost exactly like yours except I am PR+ as well.

    I had rads also. I didn't
    I had rads also. I didn't burn, but, was probably close to it. I was uncomfortable and tender, but, it all went away very quickly after I finished. I trusted my doctors judgement and felt it was the best thing for me to do to fight the cancer.

    Good luck and keep us updated,


    Jan
  • Watercolor
    Watercolor Member Posts: 45
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    NO problems with rads
    I got DCIS diagnosis in November '02. Rad treatments in Jan. and Feb. '03. NO problems with it. Was used to being exposed. That didn't bother me. Rad onc told me to use (Fruit of the Earth) 100% aloe vera gel. I slathered it on about four times per day starting a few days before rads started. He said use only Basis and Ivory soap. In any case, nothing containing alcohol. My skin got only pink and dry. Normally he has patients come back for a check-up two weeks after rad treatments end. He said I didn't need to. NO problems.
  • Megan M
    Megan M Member Posts: 3,000
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    NO problems with rads
    I got DCIS diagnosis in November '02. Rad treatments in Jan. and Feb. '03. NO problems with it. Was used to being exposed. That didn't bother me. Rad onc told me to use (Fruit of the Earth) 100% aloe vera gel. I slathered it on about four times per day starting a few days before rads started. He said use only Basis and Ivory soap. In any case, nothing containing alcohol. My skin got only pink and dry. Normally he has patients come back for a check-up two weeks after rad treatments end. He said I didn't need to. NO problems.

    Madsters, have you made your
    Madsters, have you made your decision yet whether or not to have rads?


    Hugs, Megan
  • Tux
    Tux Member Posts: 544
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    Megan M said:

    Madsters, have you made your
    Madsters, have you made your decision yet whether or not to have rads?


    Hugs, Megan

    Rads or not
    It is up to each person to decide for herself/himself. I chose rads because it gave a better chance for survival. It was definitely doable--not fun, but I got through it one day at a time. The nurses & techs were very helpful, as I think they would be in most places. I wish you the best, no matter what you decide.
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
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    Rads
    I took all i could get. Like you, I had IDC, state II (with no nodes involved), grade 3 though (at age 32). But I wanted to take all I could so I have no "what if's" later. True no one knows anything. But at the end of the day this call is on you. You need to feel comfortable about your decision. But don't let others scare you or influence you. Everyone is different.

    When I took radiation, it wasn't bad. It didn't really burn, but I only took 21 treatments. For me it was much easier than chemo.

    I understand your perspective about taking a break from all of this. I so much get it. But think about this, and consider your odds and prognosis, then make an educated decision about it. Try getting the Dr. to explain the pathology report to you and what everything means, in your case. This would be helpful to you.

    I wish you good luck. Be well.
  • Noel
    Noel Member Posts: 3,095 Member
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    Tux said:

    Rads or not
    It is up to each person to decide for herself/himself. I chose rads because it gave a better chance for survival. It was definitely doable--not fun, but I got through it one day at a time. The nurses & techs were very helpful, as I think they would be in most places. I wish you the best, no matter what you decide.

    Everyone has said what I
    Everyone has said what I would say inre to it is your decision and you just need to do whatever is right for you and what your doctors and you have agreed is the best treatment for you.


    Good luck to you,


    Noel