Calling All Ext Rad Patients, 3-10+ Yrs Later (Side Effects?)

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NSJ2
NSJ2 Member Posts: 227

Hi All

I'd like to know if we have members here that still visit who had external radiation 3 - 10+ years earlier and what your experience has been in terms of side effects since then.

Did you experience any of the following or have issues that aren't listed below that you attribute to your radiation treatment that occured years ago?

1. Permanent loss of some lung function (varies based on your individual plan) or permanent area of fibrosis in lung

2. Rib damage that left your ribs likely to break

3. If on the left side, small area of your heart damaged

4. Pneumonitis (rad bronchitis - cough, shortness of breath)

5. Lymphedema

6. Ongoing pain

7. Brachial plexopathy - damage to the brachial plexus causing permanent loss of arm function (more likely with rads to supraclavicular area)

8. Myocytis (soreness of muscles)

9. Leukemia

10. Other cancers of the breast and chest area

11. Or, any other significant medical long term side effect

NSJ2 

Comments

  • Denise-G
    Denise-G Member Posts: 1,777
    edited October 2012
  • Jennt28
    Jennt28 Member Posts: 2,021
    edited October 2012

    Since you are using my list from another thread I thought you might like to see these:



    http://www.livestrong.com/article/69177-longterm-side-effects-radiation-breast/



    http://talkabouthealth.com/what-are-typical-long-term-side-effects-of-radiation-therapy-for-breast-cancer-that-patients-should-watch-for



    http://www.radiologyinfo.org/mobile/en/info.cfm?pg=breastcancer



    The risks for most long term side effects are very low but are real. You just have to accept that they are there and hope you don't fall into the wrong side of the odds.



    Jenn

  • pj12
    pj12 Member Posts: 25,402
    edited October 2012

    Three years four months post 36 radiation treatments to left breast. Tumor was deep, close to the chest wall. No chemotherapy.



    Other than no hair in left axilla I have no apparent side effects of the treatment. I am very physically active and have no heart or lung problems. I fell, hard, about 2 years ago and hit on my left shoulder and side. No broken ribs :) I have no pain in the treated breast. There is still a little tightness in my left armpit but I attribute that more to the sentinel node removal than to radiation. I have no symptoms of lymph edema and am not especially careful of that arm except to avoid blood draws or BP on the left side.



    I hope I can say all this again in ten years! Good luck to you.



  • jancie
    jancie Member Posts: 2,631
    edited October 2012

    Finished rads September 2009.  Have some heart damage show up but not sure if that was from chemo, rads, or getting kicked by a 1500 lb horse in that chest area.

    No lymphedema - knock on wood - even though I broke my humerus bone in my left arm in three places one year after rads.  I wear a sleeve when flying and refuse any BP or needle pricks in my left arm even though the veins in my right arm suck!

    At this point I don't know what to blame SE's on.  Was it the chemo - rads, arimidex, tamoxifen???  Yes, I have horrible joint pain in both hips but I have deduced that is from the tamoxifen as when I have gone off of it for 2 weeks straight the pain will disappear and then comes back when I take the tamoxifen.

  • Beesie
    Beesie Member Posts: 12,240
    edited October 2012

    NSJ2, do you have your final pathology report yet and do you know the size of the margins?  And have you met with the medical oncologist yet?  I know that it's standard practice to recommend rads after a lumpectomy but in your case, I'd be surprised if the oncologist presses hard for you to do rads. 

    Also, a caution about relying too much on any research you do on this site. Everyone here will give you honest answers about their experiences, but you can't assume that these experiences are representative of what most women go through. Women who stick around here for years beyond their treatment (i.e. the group that you are looking to have answer your questions) are not the 'average' breast cancer patient. So if you get 20 answers and 5 of the women say that they had lung problems, you might assume that there's a 25% chance of having lung problems, or at least, that it's a pretty common problem. Of course that's not true at all.... the risk of lung problems is much much lower than that.  But if someone does have post-treatment problems, they are more likely to stick around here at BC.org for longer, or they may come here specifically to have others to talk with about their problem. It's important to keep this in mind so that you - or anyone else reading this thread - are not scared away from having rads because of what someone else might say or what they went through.  

  • SueHyun
    SueHyun Member Posts: 5
    edited November 2012

    In the last 4 years since radiation, I've had pneumonia twice.   My PR for half marathon was 2 hrs.  Now I barely can run/walk 7 miles in 1:30 hrs.   I spend about 12 hrs a day in bed but I am always tired.  My mind is a cloud of fog and I am probably going to be unable to work soon because I can not perform analytical tasks that require indepth critical thinking. 

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

    Going on 6 years out. 30 radiation treatments to the left side, no problems or concerns then or now. I also did chemo and 5 years of Arimidex. Because I upped the exercise and diet components, I am in better shape than I was going in. And best of all, no recurrence.

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited November 2012

    Lingering side effects from radiation:

    1. No hair on my left breast, and very little in the armpit.
    2. I did have reduced cardio function for about six months, but would never have noticed if not for endurance cycling events.  At the six month mark, things got better and easier.
    3. My lower pectoral on that side is more prone to soreness.  I found this out doing a 10 mile x-country ski in deep, heavy snow where I pulled both sides.  However, the left side hurt a lot more.
    4. Breast texture is firmer on the left side.  Not noticable when I wear a bra.
    5. Like Ruth, I am fitter than ever, and headed out to a 35 mile cycle to work off the Thanksgiving feast and to get some time in the sun which has been scarce recently.

    I have been slowed down and limping, but from taking two spills cycling where I landed on my left ankle.  That is finally healing. 

    I second Ruth on the exercise piece.  Not just because the best thing we can do for ourselves physically, but also because it keeps my brain in tip, top shape.  Plus a lot of good endorphin highs.

    Getting back to the initial question, I do have some physical changes from radiation, but nothing that in any way impacts my life.  With cancer in my lymph nodes, I would have needed it anyway.  The best is that I got to keep my breast, and for that I am grateful. - Claire

  • candylf
    candylf Member Posts: 1
    edited November 2012

    I had cancer 5 years ago and at the time had implants that were kept in place.  Well, the breast became hard and now I'm undergoing reconstruction.  It has been about 3 weeks since the old implants were removed and I will be getting new ones in January.  I'm noticing that the hardness is still there.  Is there anyone that has found some way of minimizing this?

  • MuttsMom
    MuttsMom Member Posts: 8
    edited May 2013

    I had no problem from radiation abd it was a little over 10 years when I was dx Stage IV.  I don't have damage from radiation, but do have a large tumor on my brachial plexus and it's inoperable.  Bo use of arm and a lot of oain.  I'm on my 4th try at treatment and with Afinitor and Arimidex it has shrunk 2 cm and will find out after my next MRI if it has shrunk more and that will be in 3 weeks

  • MuttsMom
    MuttsMom Member Posts: 8
    edited May 2013

    If you had radiation, I doubt you will see ant improvement.  They won't do expanders/implabts around here because the radiation makes it impossible a lot of times (like me) fot the tissue to even stretch enough to have what it considered a success and I wasn't willing to have a LD Flap or Tram Flap with months of recovering and so many chances of omplications causing surgeries.  They now how 1 piece bras that are kught weight, anywhere from sport's bra's to kacy, sexy ones, no cance of slipping or falling out like the older styles, so I'm, happy as can be not having anymore surgery.  I wish you an uneventful surgery and you're completely happy with

  • Christmasbaby
    Christmasbaby Member Posts: 4
    edited May 2013

    My rib cage is concave on the radiated side. So concave, had to have a 200cc bigger implant on that side. Anyone else with concave rib cages?

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