Doubts about radiation

deerello
deerello Member Posts: 22
I was reading some postings earlier about sisters not doing chemo, for whatever reason. My question is has anyone done chemo, but not radiation as recommended? I have 2 rounds of chemo to go after a bilateral mastectomy. It has not been nearly as bad as I had expected. But the thought of radiation, of the way it is decribed as "still cooking" even after it is over, scares the hell out of me. I realize there is a chance some cancer cells could still be in my chest wall, even though my surgeon got clean margins, but as 6 lymph nodes were positive, couldn't it be lurking anywhere in my body? My surgeon told me the radiation would be in the axillary area only, which I could deal with, but the radiation oncologist said it would be my entire breast. Also, I had reconstruction after surgery but had one implant removed due to infection. And the side that will be radiated is the one with the remaining implant. I have had so much trouble healing, and have more surgeries in the future. So I am wondering what my odds are without radiation. Just thinking about it makes me feel anxious and depressed, and the stress cannot be helpful in maintaining a positive attitude. Any input would be helpful, and thanks in advance!
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Comments

  • missrenee
    missrenee Member Posts: 2,136 Member
    Deerello, don't be afraid
    In my humble opinion, I wanted to do all that medical science could offer to destroy this nasty disease. Yes, the treatments we are faced with are scary and are not without risks. But, my thinking was--let's do all we can to try to stamp out this beast that thinks it's going to take over my body. Believe me, for me, rads were a walk in the park compared to chemo. I had a very aggressive 6 rounds of TAC chemo and then 33 rads. I'm so glad I did all I could at that time to try to stamp out this disease. Since I had 10 postive nodes, I had rads to my breast as well as axillary region and supra-clavicular nodes. I do not regret it.

    Your decision is personal, of course, but you are fighting a very formidable opponent. You need to fight as hard as you can with all medical technology has to offer.

    You can do this--and you will.

    Keep us posted, please.

    Hugs, Renee
  • ladyg
    ladyg Member Posts: 1,577
    I am one of
    the "lucky" ones who did not have to have chemo. I did have 33 rads and from what I have seen (a friend) and read chemo is much worse than rads. I would recommend doing what your drs. suggest but it is totally up to you. I know that I wanted to do everything necessary to fight the beast.

    Hugs,
    Georgia
  • sdukowitz
    sdukowitz Member Posts: 250
    For me , radiation went
    For me , radiation went well, very short appts laying under a machine ....I was so scared also at first, but started applying Aquaphor from day one and i went abiut my daily routine when done ... each person has different reactions to radiation and you may even want to consider another opinion from another oncologist ... good luck in your decision I almost chose not to but changed my mind since it cuts the rate of recurrance down bit quite a bit but again, one just never knows ..... Sue D
  • sdukowitz
    sdukowitz Member Posts: 250
    For me , radiation went
    Double post sorry
  • MAJW
    MAJW Member Posts: 2,510 Member
    ladyg said:

    I am one of
    the "lucky" ones who did not have to have chemo. I did have 33 rads and from what I have seen (a friend) and read chemo is much worse than rads. I would recommend doing what your drs. suggest but it is totally up to you. I know that I wanted to do everything necessary to fight the beast.

    Hugs,
    Georgia

    Take all..
    Take all that modern medicine has to offer, that's my motto! I've had radiation 3 times!!!! To different areas of my body...the last 3 months ago to the brain..,...never had the first problem other than fatigue...I was faithful in using the prescribed creams..carried it in my purse, applied it before I put my top on then 3 more times daily...never burned! But everyone is different.....the " continued cooking" is about 2 weeks, but each day your skin is beginning to "heal" .....

    And as said before, radiation, for ME, was nothing compared to chemo..of which I'm on again.....some breeze through it...and others don't...most breeze through radiation and others burn...everyone is different...but I want all they can throw at this beast!

    It's your decision...but if you can get through chemo, you can get through radiation!

    Hugs, Nancy
  • ksf56
    ksf56 Member Posts: 202
    Hi!
    I can only tell you what I went through and why. I had triple negative invasive ductal carcinoma and due to its aggressiveness, I followed my oncologists recommendations to the tee. Following 2 lumpectomies to achieve clear margins - stage 1 and grade 3 - I had 4 ACs and 12 Taxols and 33 radiation treatments. Compared to chemo, radiation, though having some burning was generally better than chemo. The worst part was fatigue. For me, fatigue actually was harder than during chemo - which I couldn't believe could be possible. But now that I'm on this side of it, I wouldn't change a thing. I fought with all I could possibly throw at it.

    Whatever you decide will be what gives you peace.

    With prayers and hugs!

    Karen
  • Margeaux
    Margeaux Member Posts: 84
    Radiation doubts
    My treatment schedule was - first 6 months of chemo, lumpectomy, radiation, 1 year Herceptin. Chemo was very hard on me, so was removal of 18 lymph nodes, which is still causing me chronic pain. I only completed 28 out of 33 scheduled radiation treatments. There is hardly a day when I do not regret this! Soemhow, somewhere I'd have found the strength to go on another week - you will find the strength too, it is amazing what we brave women can do! I did have burns and used aquaphor during radiation as well as aloe vera, it took a while to heal, but heal it did!
    Hugs, Margeaux\
    PS - sometimes I am so scared, what if it comes back? I'll blame myself and think I did not do enough, doctor says - stopo it!
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    Surgery, Radiation, Chemo, Tamoxifen, anything else please?
    Hi -- I am another one to think I must do anything within my power, given what science has to offer, to use all possible weapons to kick some A$$! Radiation for me was very easy, but it made me tired at times. That was it. Chemo in the other hand, wasn't so easy, but doable. I had 8 sessions, ACT was my regimen. I think you will do well with radiation. Just be sure to use sunscreen on the radiated area before you leave your home. Be sure to use the recommended creams by your Onco, daily. Wear comfortable clothes to allow your skin to get some air. Go rock it! You will do great! :)
  • ajdebbs
    ajdebbs Member Posts: 18
    i hate it that we have to be
    i hate it that we have to be put in situations to have to make such decisions as these but like one of the gals wrote.....whatever you do.....make sure it gives you peace.
    I'm going thru radiation right now and it was probably my post that you got the "still cooking" comment from. i will be honest and say that i had to take a break because my skin blistered 2/3's of the way thru......but when i spoke to my dr about it.....he decided to give me a break from them. i didn't know that could be done.
    what i'm trying to say is that as much as it sucks to have to go thru this and the physical annoyances we have to deal with......i would be freakin out far much more if i DID NOT do everything i could to make sure it never comes back. 33 treatments and some underarm sores as a result that will eventually heal and go away.....are not worth me not doing the radiation all together.
    i hope all these posts help you to make a peaceful decision......they have certainly helped me to know i'm doing the right thing but pressing on. I did not go thru everything (chemo/bilateral mast) i have gone thru just to cut it short and take a chance that maybe....just maybe....

    we are stronger than breast cancer.....

    good luck sweety. you are in our thoughts and prayers as you make this decision for yourself. God bless.
  • Monicalynn
    Monicalynn Member Posts: 61
    I have only been offered
    I have only been offered chemo and am having my last of four rounds on the 21rst, then 13 infusions of herceptin to follow. Like many I have chosen to give any medicine or treatment that is offered in order to kick the cancer in the **** as one of my nurses said. I have two kids that are 8 and 6 so have to fight for them to and not just myself. Keep you chin up and definately keep coming back to the board, so many here give valuable info and I like coming back because they have experienced all that I am going through and gives me fresh ideas and thoughts.
  • Tux
    Tux Member Posts: 544
    questioning rads
    I found rads definitely doable. My dx was different from yours, but for me, it increased my chances from 92% TO 98%. Rads made me a little tired, but that was all I did besides work. BTW, I missed no days of work due to rads. The nurses & techs were overall very helpful.
    I would do it again, in a heartbeat, if it increased my chances of survival. But everyone has to make the choice best for them, so we will support you no matter what you decide.

    (((Hugs))) and prayers sent your way.
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    missrenee said:

    Deerello, don't be afraid
    In my humble opinion, I wanted to do all that medical science could offer to destroy this nasty disease. Yes, the treatments we are faced with are scary and are not without risks. But, my thinking was--let's do all we can to try to stamp out this beast that thinks it's going to take over my body. Believe me, for me, rads were a walk in the park compared to chemo. I had a very aggressive 6 rounds of TAC chemo and then 33 rads. I'm so glad I did all I could at that time to try to stamp out this disease. Since I had 10 postive nodes, I had rads to my breast as well as axillary region and supra-clavicular nodes. I do not regret it.

    Your decision is personal, of course, but you are fighting a very formidable opponent. You need to fight as hard as you can with all medical technology has to offer.

    You can do this--and you will.

    Keep us posted, please.

    Hugs, Renee

    I had a lumpectomy and rads,
    I had a lumpectomy and rads, no chemo. I was never afraid of rads as I knew it was part of my treatment to save my life. I knew there might be side effects or complications, but, I wanted to fight the beast with everything I could.

    I know you will decide what is best for you. Good luck!
  • deerello
    deerello Member Posts: 22
    Decision about Radiation
    Thank you all for your replies. I have thought a lot, prayed on it, etc. My husband said whatever decision I made he would support. It is tough; I knew I would second guess myself no matter what, and whatever I decided I have to own it. So I am going to do radiation. After losing my breasts, going thru chemo, and all the complications I am having with reconstruction, I figure I need to see it through. Down the road, if anything else happens, I honestly don't know, but one day at a time, right? From reading posts I realize things could be a lot worse and my thanks and prayers go out to everyone. God Bless!
  • Megan M
    Megan M Member Posts: 3,000
    sdukowitz said:

    For me , radiation went
    For me , radiation went well, very short appts laying under a machine ....I was so scared also at first, but started applying Aquaphor from day one and i went abiut my daily routine when done ... each person has different reactions to radiation and you may even want to consider another opinion from another oncologist ... good luck in your decision I almost chose not to but changed my mind since it cuts the rate of recurrance down bit quite a bit but again, one just never knows ..... Sue D

    I don't know what anyone's
    I don't know what anyone's odds are that decide to not to rads if their oncologist suggests it for them. I had rads after my lumpectomy and have had no problems since then.

    I do wish you the best in your decision.

    Hugs, Megan
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    deerello said:

    Decision about Radiation
    Thank you all for your replies. I have thought a lot, prayed on it, etc. My husband said whatever decision I made he would support. It is tough; I knew I would second guess myself no matter what, and whatever I decided I have to own it. So I am going to do radiation. After losing my breasts, going thru chemo, and all the complications I am having with reconstruction, I figure I need to see it through. Down the road, if anything else happens, I honestly don't know, but one day at a time, right? From reading posts I realize things could be a lot worse and my thanks and prayers go out to everyone. God Bless!

    Yes, one day at a time! I
    Yes, one day at a time! I am glad you came to a decision that you like. You can do rads..just ask us about anything and we will help you.
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    deerello said:

    Decision about Radiation
    Thank you all for your replies. I have thought a lot, prayed on it, etc. My husband said whatever decision I made he would support. It is tough; I knew I would second guess myself no matter what, and whatever I decided I have to own it. So I am going to do radiation. After losing my breasts, going thru chemo, and all the complications I am having with reconstruction, I figure I need to see it through. Down the road, if anything else happens, I honestly don't know, but one day at a time, right? From reading posts I realize things could be a lot worse and my thanks and prayers go out to everyone. God Bless!

    I didn't read every reply,
    I didn't read every reply, so if I'm repeating what has already been said I'm sorry.

    Some reassurance for you on the phrase 'still cooking'...all it really means is that the radiation (like other medications we take) doesn't leave your body immediately. Sometimes the sense of humor doesn't always translate well.

    A dear pink sister says "we do what we have to do, so we can do what we want to do." Radiation is one of those things. And you are absolutely right about one day at a time!

    Please come back, we really do care and will help you through this.

    Hugs,

    Linda
  • DianeBC
    DianeBC Member Posts: 3,881 Member

    I didn't read every reply,
    I didn't read every reply, so if I'm repeating what has already been said I'm sorry.

    Some reassurance for you on the phrase 'still cooking'...all it really means is that the radiation (like other medications we take) doesn't leave your body immediately. Sometimes the sense of humor doesn't always translate well.

    A dear pink sister says "we do what we have to do, so we can do what we want to do." Radiation is one of those things. And you are absolutely right about one day at a time!

    Please come back, we really do care and will help you through this.

    Hugs,

    Linda

    You are always in control of
    You are always in control of whatever you decide to do about treating your bc. If your doctors have suggested that you do rads, please read or find out all that you can, read what we have all said and make your decision.

    I know you can do rads, most of us had them, but, you have to do what you want to do and what feels right to you.

    Keep us posted,


    Diane
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    DianeBC said:

    You are always in control of
    You are always in control of whatever you decide to do about treating your bc. If your doctors have suggested that you do rads, please read or find out all that you can, read what we have all said and make your decision.

    I know you can do rads, most of us had them, but, you have to do what you want to do and what feels right to you.

    Keep us posted,


    Diane

    Good news! We are here to
    Good news! We are here to help you through rads however we can.


    Hugs, Jan
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    I had no choice; I had to
    I had no choice; I had to have radiation. I never had a problem.

    My little sister, Wendy, was told by her San Diego surgeon that radiation was overkill. My father (then head of neurology at LSUMC) sent her biopsy slides to a locally prominent pathologist who felt like she would benefit from radiation because her margins were not that clear, etc. She decided against the radiation anyway. Exactly 4 years later, she had a local recurrence.

    She flew home, had her mastectomy area "cleaned up" by the breast surgeon who had done my mastectomy and then had the radiation. She has now been (I think) about 8 more years and has done great. She had absolutely no problems with radiation either. And she still gets angry that she didn't listen to my dad's pathologist.

    Wendy had had bilateral mastectomies (she only had cancer on the left, but we have a terrible family history) and had implants when she had her radiation. So far, so good with the implants.

    I don't know what is the right answer in your case, but I would really have a heart to heart with the radiation oncologist and your plastic surgeon.

    Good luck!
  • Noel
    Noel Member Posts: 3,095 Member

    I had no choice; I had to
    I had no choice; I had to have radiation. I never had a problem.

    My little sister, Wendy, was told by her San Diego surgeon that radiation was overkill. My father (then head of neurology at LSUMC) sent her biopsy slides to a locally prominent pathologist who felt like she would benefit from radiation because her margins were not that clear, etc. She decided against the radiation anyway. Exactly 4 years later, she had a local recurrence.

    She flew home, had her mastectomy area "cleaned up" by the breast surgeon who had done my mastectomy and then had the radiation. She has now been (I think) about 8 more years and has done great. She had absolutely no problems with radiation either. And she still gets angry that she didn't listen to my dad's pathologist.

    Wendy had had bilateral mastectomies (she only had cancer on the left, but we have a terrible family history) and had implants when she had her radiation. So far, so good with the implants.

    I don't know what is the right answer in your case, but I would really have a heart to heart with the radiation oncologist and your plastic surgeon.

    Good luck!

    I have to say that I am glad
    I have to say that I am glad that you've decided to go ahead with rads. I really believe that you have made the right choice.

    I am wishing you good luck and lean us if you need any tips about rads.


    Good luck and keep us updated,



    Noel