Scared of radiation - how bad is it?

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Hi everyone! I am following these boards and I have a lot of anticipatory anxiety before each treatment stage. I just finished a/c, and just finished my first round of taxol. I do surgery next. After that I need radiation as I have one node positive. There is always the chance it may have spread to two. I need radiation to lymph nodes, chest wall and supraclavicular. Did not spread there but they are radiating where most likely to reoccur. I am BRACA2 positive so I am sensitive to radiations effects and scared about a secondary cancer. However, I realize I have to take care of the existing one.

How bad is the fatigue from radiation? Will I be damaged after? Do they protect your thyroid?

Signed,

Scaredy Cat aka Pam

Comments

  • AnnieBear
    AnnieBear Member Posts: 96
    edited July 2012

    Pam - I was scared too of radiation and it turned out to be a breeze.  I wasn't tired at all and yes, they protect your thryoid.  I am very pale-skinned and I used a lot of lotion on my boob, several times a day and I was fine.  Do not worry.  I read so many scary things about it but the technicians put me at ease during my fist visit and they were so wonderful.  Good luck!

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited July 2012

    Radiation was easy compared to chemotherapy.  Expect a burn, somewhat like a sunburn; redness, itching, a little peeling.  You`ll be given cream to help with that.  No excessive tiredness for me; at least, nothing like how I felt during chemo. 

    Secondary cancers from breast radiation - while they do occur - are very rare.  If you are having left-sided radiation, they are very careful to ensure that your heart is protected from the beam.   Unfortunately, a lot of breast cancer treatment is weighing the risks against the benefits, which is sometimes scary.

  • pupmom
    pupmom Member Posts: 5,068
    edited July 2012

    For me it was a breeze, except for having to be there 5 days a week for 6 weeks. I was just a little itchy and red towards the end. Now you'd never know I had rads. I was NEVER tired. Walked an hour a day every day. Honestly, people who have severe reactions are the exception not the norm. Best wishes!

  • pamelahope
    pamelahope Member Posts: 534
    edited July 2012

    Your posts are reassuring... What about all the fatigue I hear about? Did you get that? Pam

  • pupmom
    pupmom Member Posts: 5,068
    edited July 2012

    No fatigue for me!

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited July 2012

    I`m not sure that the fatigue experienced during radiation isn`t - partly - because of chemotherapy, as well.  I know that some women really struggle with it; other`s not so much.  I was tired during radiation, but not as bone-deep, hard-to-put-one-foot-in-front-of-the-other tired as I felt during chemotherapy; however, the woman I made friends with during treatment had the opposite; she was fine throughout chemotherapy - she, even, continued working full-time - but radiation wore her out.  It`s hard to say who will experience what.

  • pupmom
    pupmom Member Posts: 5,068
    edited July 2012

    Interesting point Selena. I did not have chemo. That could account for my lack of fatigue.

  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited July 2012

    For me, the physical side effects of radiation were very mild. My skin got red, but it was not painful and it healed quickly once rads ended. I had some fatigue, but it was not bad. My difficult part was in the emotional area. There, rads really did a number on me. I hope you will sail through rads physically and emotionally.

  • sweetpea23
    sweetpea23 Member Posts: 56
    edited July 2012

    I just finished up my rads today and I can tell you that I did have a lot of fatigue. I tried to do a little less and take a nap when I could. It would hit me like a wall in the afternoon, but everyone is different. I learned not to be out and about around that time. I had just the other regular side effects like burning, itching, etc..., but they can be managed w/ a bunch of creams. Good luck and take care.

  • Letlet
    Letlet Member Posts: 1,053
    edited July 2012

    Radiation was not nice to me. Yes i experienced really bad fatigue and would just come home and sit on the couch until it was time to sleep. My skin also burst open and i had several raw places and it was quite painful.



    This was a year ago, I go to the gym now and exercise the heck out. It is a distant bad memory :)

  • peggy_j
    peggy_j Member Posts: 1,700
    edited August 2012

    Don't be scared! ;) Like others have said, rads was mostly a breeze. I had surgery and rads and for the first 4 weeks of rads the fatigue wasn't bad at all. It caught up to me during weeks 5 and 6. (it accumulates). It took 2-3 weeks after rads for the fatigue to go away (and even during those weeks, I'd have a good day, then a bad day, so it wasn't that bad). FWIW, I took my nurse's advice and walked 1/2 hour a day--made it a top priority--because it boosts the immune system and gives you a bit of extra energy. Near the end of rads I would sometimes walk first thing in the morning to make sure I got it in. I'm a vegetarian, so I also made sure I ate extra protein so the tissues healed. (I heard extra protein is even more helpful during chemo)

    FWIW, one of my friends (a 12 yr BC survivor) had a lump, chemo, rads and took Tamox for 5 yrs then an AI for 2 years. (with some SEs). She said rads was the easiest part of her Tx by far.  So maybe once you do chemo, everything is easy after that. Good luck! You'll do great!

  • pamelahope
    pamelahope Member Posts: 534
    edited August 2012

    PeggyJ, Encouraging to hear about your friend, a 12 year survivor. I am scared about rads as it seems so much, underarm, chest wall, and supraclavicular. I don't have it there but it is the spots most likely for reoccurence. I do have one node positive. I am concerned about long term effects. Pam

  • peggy_j
    peggy_j Member Posts: 1,700
    edited August 2012

    Yeah, I hear you. I was also worried about the long term effects. It's a major bummer. Your situation (location of rads) is different than mine and everyone needs to choose for themselves. Even though I hate to think of the possible long term SEs, right now I'm happy and hopeful that I made the right decision. 

    If you want more happy stories, I know many long-term survivors:

    --my friend who's a 12 yr survivor had several (5? 6?) positive lymph nodes. She's doing great today.

    --I know two women who are >15 yr survivors. One had one (or more) positive lymph node (I can't remember the details)

    --I know someone who is a survivor for 30 years and counting! (she was 31 when her husband found the lump.) She said she plans to live to 90.

    We don't hear this too often but there are many long term surivors out there, and just think of all the medical advances made in the last 10, 15, 30 years.

    BTW, I attended a Guided Imagery class (all different kinds of cancer patients) and one of the guys in my class (prostate cancer) used to do the imagery while he was on the rads table. He'd imagine the the rays zapping the cancer cells.  He found it an empowering experience.  Maybe something to consider? Wishing you good luck with your rads and sending you positive, healing vibes. (((hugs)))

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited August 2012

    I'm sure their are exceptions regarding fatigue, but I think the key to it is how FIT and SLEEP SUFFICIENT you are before beginning rads.  If you are in top shape, it may not hit you too hard.  If (like me) you go in to it with a perpetual sleep deficit of many years standing, I can pretty much guarantee you will get hit with the fatigue. 

    About 1/3 of women get a more severe skin reaction, so the majority do not fare that badly.  O used an aloe lotion but others work well also.  The walking, extra protein and hydrating are good tips.  Good Luck to you.

  • Cindyl
    Cindyl Member Posts: 1,194
    edited August 2012

    I was tired when I started tx, and by the time I got to the end i was a zombie.  But I also couldn't sleep so the fatigue just kept snowballing.  I had a really nasty skin reaction, but it was only troubling for a few days. And the nasty annoying little cough I had going in has totally cleared up.  I'm two months out from rads and i can't say my energy level is back where it was before dx, but it gets better all the time.  I'm walking and swimming for at least 1 hour a day so, getting some stamina back.

     The one thing no one has mentioned is the amazing amount of support the rads team can be.  Not everyone has a great team, but I did.  My boys (all young enough to be my kids) took great care of me and it was a comfort to me to have so many people keeping close tabs on my health at such a scary time. The doctor saw me every week, my nurse was always there and ready to talk, the cancer navigator was just around the corner.  I think I'd have felt really adrift if the surgeon had just cut me loose and that had been the end of treatment.  By the time rads were done (well actually the week after, because I had to come in to have my ooozing wounds treated) I was ready to solo. 

    And with all the problems I had I was able to work full time and only ended up missing a few hours of work over and above the 30 minutes a day that rads took.

    Now, my skin is a little more tan than it's ever been, and I still have swelling that may be related to rads, but nothing of note.  I wouldn't say it was a walk in the park, but I'd say it's very doable.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited August 2012

    I found radiation to be a lot easier than chemo. I didn't feel fatigued, I actually felt like my energy was rebounding. I think a key for me was that I kept up with exercise as much as I was able during both chemo and rads.

    Use whatever lotion they recommend right from the start. Don't wait until you start to get red. I'd bring a little tube into the changing room and slap some on right when I was done, and again before I went to bed. Do NOT put it on in the morning before you get zapped, as that can intensify the burn. Get some fans. I got pretty red and felt hot at the end (but no blistering or peeling), so I would sit with a fan blowing right on my boob area, which felt good.

    Hang in there, it is just a few weeks out of the whole rest of your life!

  • PhunkyM
    PhunkyM Member Posts: 49
    edited August 2012

    The lotions are a must-start using them early. My doc suggested that I use Aquaphor. Greasy but effective! I got really red and ouchy so I ended up getting a prescription about two weeks in.



    I wasn't tired at first, but on day 19 fatigue hit me hard. I worked full-time through all of it, and I know that might have been too much for my body after surgery and chemo.



    Radiation was WAY easier than chemo, but it wasn't great. Now you can barely tell that I has such red and itchy skin.

  • Mardibra
    Mardibra Member Posts: 1,111
    edited August 2012

    I worked full time throughout chemo, surgery (took a week off), and rads. Rads was pretty easy but I started to feel the fatigue at about week four. But, nothing like chemo. I am pretty fair skinned and I only had minor redness. Lotion, lotion, lotion!

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited August 2012

    I forgot to comment on your thyroid question...

    I did not get rads to supraclavicular area, so my own worry was not about the thyroid.  Why not ask if they have that thyroid collar like dentist offices have?  You may still get a bit of "scatter" off your ribs and collarbone, but it may give you some additional shielding.  

  • rn4babies
    rn4babies Member Posts: 409
    edited August 2012

    I had radiation last year to the left breast and am doing it again because I was diagnosed with a second primary in the other breast. They did not protect my thyroid.  I finished chemo on July 16th and feel that rads last time was a piece of cake compared to chemo. It was exhausting going every day after work, however. Also, despite meticulous skin care, I got burned pretty bad and they delayed it a week. The RO told me that it may happen again since apparently that's the way my skin reacts. I am olive skinned and tan easily so it was surprising. I didn''t experience fatigue the last time but the RO told me it is differant when following chemo. My counts are already down and they won't start it until they come up. I'm going on vacation to the beach so I'm hoping to start the first week of September.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    For me the worst was having to go every day for 6.5 weeks (M-F). I had a sunburn-like redness and a bit of peeling, nothing more. I was more fatigued at the end but a nap after each rad tx if I needed it fixed me right up. That was it...pretty easy and each tx so short (like 10" or less) compared to the hours-long infusions of chemo!

    Claire

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited August 2012
    There really is no correlation betweem fairness of skin and whether you will get "rads burn" of not.  If it were a factor, black women (or other dark skinned women) would not burn, but that is not the case.  I've heard that is about 1/3 of all women that go above and beyond the typical minor redness/soreness reaction.  I would think that those having chemo + radiation might be more likely to have a worse skin reaction (as their cells are getting the dual attack) but even that doesn't seem to be the case.  It might be a higher percentage, not sure, but not all who do chemo automatically get severe rads reaction.  Just another B/C coin toss.
  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2012

    folks told me to watch out for burns so I did.  It started to get a bit pink so I yelled!  The techs (yes they were great) gave me a bunch of samples to use and said try the dif ones and then we will give you more or whatever you want!  And they did.  I did get one nasty burn/blister under my large boobie, they gave me a script for SSD cream.

    tired, yeap along about week 3 which is just what my RO told me would happen.

    but all in all, not bad, not looking for a repeat on the other boob but doable

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