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Post radiotherapy damage

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helenlouise
helenlouise Member Posts: 363

Does anyone have damage from radiation?

I have had two rounds of 30 doses of radiotherapy to my left chest: 2013 post lumpectomy for DCIS and 2018 post mastectomy for TNBC. As it was 5 years between my RO said it was ok. I now regret taking this course of action.

Since my last round of radiation, I have had two recurrences on the mastectomy scar. One required a surgical biopsy that created a wound that took 16 weeks to heal.

My last biopsy showed my cancer had flipped to HER2 positive so I have been on herceptin & perjeta three weekly since March 2020. Reached NED in July 2020.

Now have a red plaque type rash around the scar and what feels like rib pain. At night I wake several times due to left chest pain. MO sent me for PET that came back clear. No mass to be found. Had FNA biopsies of the area on Tuesday and the radiologist said he thinks it's damage from the radiotherapy. He also thought he could see small fractures in my ribs so xrayed them.

Anyone with experience of radiation fibrosis syndrome or radio necrosis of the ribs or radiation dermatitis?

Any comments, advice or suggestions will be very muchappreciated.

Comments

  • laughinggull
    laughinggull Member Posts: 511
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    Me!

    The area around my ribs is very uncomfortable and I worry if it is radiation damage or a recurrence.

    No rash or dermatitis or wounds, but I have a lot of uncomfortable rib pain and sore spots, after radiation 4 years ago in 2018. It seems more noticeable every year. Last year, I had a nuclear bone scan that didn't show anything. But the pins and needles, sore spots, burning feelings and little stabs of pain all over the place are a bummer. My bras need to be very soft. If I sleep on the radiated area, I have pain in the area, and "pins and needles" feeling the next day. Working out using the muscles in the area (which I do regularly), more pins and needles, soreness. I will see my MO next month, and I want her to look into this -she has been shrugging it off. Which type of doctor looks into this? I never saw the radiation oncologist after the last radiation and my MO doesn't see an issue.

  • helenlouise
    helenlouise Member Posts: 363
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    Thank you for your post laughing gull. I am sorry you are suffering. Pins and needles could be related to blood flow / neuropathy or even Lymphedema issue?

    Yes I am afraid that if my biopsy results show no cancer these symptoms won’t fall into my MOs domain. I don’t know that my GP would know what to do. So who do we see? Who can help us? It appears to be a very specialised area.

    I will let you know what comes from my next MO appointment (Wednesday).
  • iamloved
    iamloved Member Posts: 197
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    It has been 11 months since I had radiation and I find my radiated breast has more soreness now. I have had a pain on my rib directly below my breast that I told my oncologist about right away. I told her it hurt to press on it so she said "don't press on it". It is when the band of my bra sits so at times it becomes quite sore. I guess it is just the constant thought of the cancer returning. My Oncologist wrote in her notes about a possible bone scan when I see her again in May. Who knows🤷♀️

  • helenlouise
    helenlouise Member Posts: 363
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    good idea to follow up. My scan revealed rib fractures on 3, 4 & 5. That explains the pain. Apparently the result of too much radiation. Now have oestonecrosis in the ribs :(. Gotta be happy it’s not cancer.

  • lalbo
    lalbo Member Posts: 68
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    Do any of these doctors care about the after effects of these treatments? I'm sorry, I had radiation and every day wish that I hadn't. I have some pains at the top of my ribs under my radiated breast. This sucks.

  • jmb5
    jmb5 Member Posts: 59
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    I had radiation in 2010 and found a small spot of skin cancer right where the radiation was. (It looked like a pimple at first and then had an indent in the middle, so I knew it wasn't good.) My dermatologist was able to easily remove it and no further treatment was needed. She said it was most likely from the radiation. I do yearly skin checks now. Be diligent! Don't ignore if something looks off.

  • serendipity09
    serendipity09 Member Posts: 769
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    jmb5 - agreed! We really need to advocate for ourselves. Learned the hard way and I really thought I was advocating for myself prior to. If something does not seem right, get it checked.

    helenlouise - I hope the pain eases up.

    LaughingGull - I hope thing ease up for you.

    Lalbo - I hated rads during and definitely after. I wish I didn't have to do it.

  • laughinggull
    laughinggull Member Posts: 511
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    Hi all,

    Helenlouise, thanks for posting an update. Three broken ribs! As you said, it sucks but it's not cancer and your PET is clear. What is the course of action to heal those ribs? What about the osteonecrosis?

    I went yesterday for a nuclear bone scan to check my ribs (and the rest of my bones); I also saw my MO and she said my complaints are very common among patients who underwent radiation and that it all sounds normal, but since the ribs are bothering me more and more, it is better to get things checked. I will update when I have my results.

    Best to all,

    LaughingGull

  • Caligirl55555
    Caligirl55555 Member Posts: 20
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    Hello all,
    I am lined up for 6 weeks of radiation and wondering if skipping is a course of action anyone takes? 0/8 nodes.
    Oncotype is only 18, so no chemo. Low risk. It was left breast quadrantectomy for a 2.7cm tumor, negative margins. The first radiologist misdiagnosed the size to 4.7 so more tissue was taken the necessary. Also, more nodes obviously. He took 3 fat pockets that lit up from the dye, not knowing there were multiple nodes inside each pocket because he said they were so small. My bad for having small nodes. Everyone says missing 8 nodes is a non-issue. Shoulder shrug.

    I am wavering because of the left-breast (breathing technique assists with heart not being hit with radiation but it is still terrifying). I am concerned about my lymph nodes though she says they will not be radiated. Will they be ok? I don't even know how may I have left. To me, if later my heart and lungs don't function properly and I have lymphedema, is that a good quality of life? What are the risks really?? Any advice there? I don't want to back out of something that can save my life and keep a cell from traveling around, but I have a 20% of recurrence now and radiation takes it to 8%. I'm only 50 so they say I cannot skip it. Anyone out there skip it??
  • maggie15
    maggie15 Member Posts: 853
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    Hi Caligirl55555,

    I would go ahead with the radiation in your case even though it got my lungs. My tumor was 3 cm, no nodes, and Oncotype 20 so radiation was recommended but no chemo. It was my right breast so I didn't have to worry about my heart. I'm older than you (69 at time of rads) so more likely to have late side effects.

    The chance of lung fibrosis is 1.5% for smokers/former smokers and .3% for never smokers. Prior chemo, being over 65, current tamoxifen use and autoimmune disease like RA increase the likelihood of lung damage. I learned all this after my RO sent me to the hospital's interstitial lung disease clinic when my radiation pneumonitis turned into radiation fibrosis (as seen on a CT scan.) I'm a never smoker who was not on endocrine therapy with no history of lung problems so I was just one of the unlucky 3 in 1000 who now has another big problem to deal with. I'm on steroids for the next 18 months to try to keep the scarring from progressing. I can't tell you about the possibility of cardiac complications. I also lost the hair in my left armpit, but that's a good side effect in my opinion.

    I would wait until after radiation to start endocrine therapy. If you develop a dry cough and low grade fever contact your RO immediately so that any radiation pneumonitis can be treated with a short course of steroids before progressive damage starts. My PCP thought I had walking pneumonia so it wasn't until after three rounds of antibiotics and a worsening chest x-ray two months later that she ordered the CT and my RO became involved. "Cough" was vaguely mentioned in possible side effects handouts I received. I asked my RO why it was in the fine print with no description of its implication. He admitted that they were trying to cut down on phone calls from patients with allergies, colds, flu, etc., but given what happened to me would revise it.

    Unfortunately rare side effects can happen, but the benefit for most people outweighs them. Good luck with your treatment!





  • alicebastable
    alicebastable Member Posts: 1,939
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    Caligirl55555, the size difference wasn't a misdiagnosis. The imaging (mammogram, ultrasound, and MRI) frequently show different sizes, and they frequently are different from the pathology. The imaging routine is to find it, confirm the location, and give an estimate of the size - mostly information for the surgeon to use in their planning.

  • racheldog
    racheldog Member Posts: 209
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    Not sure if this is the right forum for "after" radiation scenarios but I will pose this question to the group. I am 7 months out from WB radiation. I am a bit disappointed that the Rad. Onc just sort of drops out of the picture after that? I certainly will push to get some answers, if not from her, from her partner. I have heard that other BC patients do get f/u at least at 6 months?

    I have seen my MO who feels like I have some breast edema. Scar tissue where the small tumor was but now my outer breast (no node involvement) seems harder, and gets itchy, occasional achiness. I am seeing my new surgeon tomorrow for f/u (my former surgeon left the group) and I plan to ask her if this edema and hardness/lumpiness in outer area is normal? I have not been great about wearing compression bras as it was more comfortable to to without.

    Have any of you had "breast edema" months out? I know there are PT providers who specialize in lymphedema and maybe they do manual lymphatic drainage of the breast only. Did any of you have this done? Is your breast harder 7 months or so out from all this?

  • alicebastable
    alicebastable Member Posts: 1,939
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    My breast feels knotty and it's nearly four years. Both my MO and BS said it's scar tissue, which, depending on your build and age, can keep shifting around for a long time. If yours feels swollen, definitely ask if either of your doctors thinks it could be lymphedema, and ask for a referral. As far as the RO, I never saw him after my last session. They told me to call if I had a problem, but my MO and BS would be enough. Fine with me,one less doctor to pay!

  • norcals
    norcals Member Posts: 206
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    Racheldog,

    I started having swelling around the radiated breast and trunk about 6 months after radiation. MO referred me to a lymphedema specialist who said that it was common to see symptoms about 6 months after radiation. She said that after radiation, performing drainage massages is very important so that your body “learns” different routes for drainage if you have had lymph nodes removed. I had not been performing any of the drainage massages. After 3 sessions with the lymphedema specialist, I felt much better. I have been doing the drainage massages (not as often as I should) and they have helped.

  • racheldog
    racheldog Member Posts: 209
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    Well NorCalS and Alice, thank you for posting. I have to admit that I was bad about wearing a compression bra as it is more comfortable to go without. I did get the paperwork for the lymphedema PT. I guess I will proceed. It is always so scary as you think of the worst possible scenarios! I never had the breast be itchy or heavier when radiation was completed last July. Have been feeling lost to f/u with the radiation onc which irritates me but I will push if I need to see her again.

    Thank you all for posting your experiences with this everchanging journey!!

  • minustwo
    minustwo Member Posts: 13,077
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    My RO is the one who diagnosed my LE and referred me to a trained LEPT. Fortunately mine is mostly breast & truncal and I have been very diligent that it does not progress to my arms or hands. Here's a trusted site with lots of into.

    http://www.stepup-speakout.org/


  • juju-mar
    juju-mar Member Posts: 200
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    I too finished radiation at the end of July 2021. And at 6 months, noticed more fluid under my mastectomy site, I do see a lymphedema PT lady who does some deep tissue massage. I did buy some compression tank tops, think spanx from Kohls. They help a lot. I also wear a sleeve and use an 8 chamber pump daily. My arm has not has any issues. I had a total of 16 nodes removed, 2 had micromets, so I did chemo as well. I have to remind myself daily to massage or dry brush the area. I'm 55 and will probably have to do this for however long I live. Julie

  • racheldog
    racheldog Member Posts: 209
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    Appreciate all the input on this. Who would imagine at 6-7 months this would start? I am getting in to the Lymphedema PT in a week. Back on with the compression bra! On the flip side, I have larger breasts and not wearing a bra may have avoided the shrinkage in breast size? Who knows. But the other flip side is the edema.

    Have any of you had reduction or more "softness" or lessening of scar tissue formation by lymphatic drainage? I guess that question is for those who have had lumpectomy followed by radiation? I would doubt that will change and scar tissue and hard lumpiness is there for good.

    Thank you for posting the informative website as well and the input here! It is hard to harness doctors who are limited to short time with patients in clinic to get answers. These forums for shared information have become invaluable.

  • alicebastable
    alicebastable Member Posts: 1,939
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    I never wore compression bras except for about three weeks after the lumpectomy, and again after a re-excision a month later. My BS said she was really pleased with my lack of swelling both times. It never occurred to me to wear one during or after radiation, and so far, I haven't had problem after more than three years.

  • racheldog
    racheldog Member Posts: 209
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    Started with the Lymphedema PT today and she did both Manual lymphatic drainage and the Laser light treatment. Have any of you had Laser treatment? Supposed to help with scar tissue and fibrosis.

    She has quite a busy practice and this really is a specialty. Back on with the compression bra for now. The PT mentions radiation as "the gift that keeps on giving" --- even years later. Mine is only breast edema and mild tuncal near my back. Still a surprise and something not emphasized enough as complication.

  • norcals
    norcals Member Posts: 206
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    Racheldog,

    I totally agree with you. I took a clinic on lymphedema after my lumpectomy and the focus was on the fingers and arms. I constantly checked my arms and fingers after the SNB and ALND, but I never thought that I would get swelling in the trunk or breast. The brochure I was given after the surgery did not have any information on truncal swelling or drainage massage of the trunk and breast. I thought it was a recurrence when I saw my breast swell and I started having pain on my sides.

  • minustwo
    minustwo Member Posts: 13,077
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    Truncal & breast here too. I wear a mild compression bra 24/7 (for the last 8 years), learned MLD & practice regularly, get measured sporadically, never allow blood draws from my arms (ankle only) only allow manual BP on the least affected side, and wear sleeves & gauntets when I fly. My goal is to keep LE from progressing to my arms or hands - and it's still working.

    Edited to say - Rachael, I will be interested to hear how the LE Laser therapy works out.

  • Susiemommy
    Susiemommy Member Posts: 46
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    Racheldog, how are you doing with the breast edema? It's uncanny, I believe I may be having the same issue. I'm hoping that's all it is anyway. I'm getting super frustrated, though, with the passing around from doctor to doctor just figuring out who should address this. Hope you're doing well with it. Please keep us updated.

  • racheldog
    racheldog Member Posts: 209
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    Susiemommy, took me a while to answer since this new site format is slow and lagging! Not a fan. I am in to my third PT lymphedema treatment this week. I was impressed after the first treatment but the second ?? I am trying to be good at wearing my new compression bras. The PT is very good and considers my edema mild to moderate. Her practice is expanding. I do not think this possible issue is addressed enough with patients. I remain dissapointed with my radiation onc and her follow up. It was my breast surgeon and onc who addressed this. From my understanding this can get better and come back. Yikes.

  • alden722
    alden722 Member Posts: 22
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    I am being sent to a dermatologist to get a biopsy done on a mole that is very off looking right below my radiated breast. I was first diagnosed in 2018 and had a reoccurrence in 2020. I just feel like I can't get off the cancer wagon. I'm hopeful if it is skin cancer from radiation it's easily treatable.

  • castigame
    castigame Member Posts: 336
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    well please excuse if I sound bitter. I had breathing practice so holding breath for almost min was not an issue at all. Never smoker. Had minor lung damage. Just had simple mastectomy a few days ago to remove a few atypical vascular proliferation. The Surgeon did not see anything bad. But I am still scared.

  • lw422
    lw422 Member Posts: 1,399
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    Castigame--sorry you are having to go through the damn anxiety again. My best wishes to you for a "no issue" outcome, and for easy healing from your surgery. Blessings to you and take care.

  • gardengurl
    gardengurl Member Posts: 23
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    Finished 10 sessions of accelerated partial breast radiation in June 2022. Since then I have been having a good amount of pain underneath that breast. Experimenting with different bras because the band puts pressure on rib. I have had two yeast infections in that area. I so regret getting radiation when I had a very low-grade tumor. I wasn’t offered a lift with a lumpectomy. Maybe I wouldn’t have so many skin problems if my breasts didn’t sag causing moisture build up. I currently put cotton pads under the breast and change several times a day, but the burning is a constant reminder. Had my post op mammo last week,

  • maggie15
    maggie15 Member Posts: 853
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    gardengurl: Whole breast and axillary radiation really did me in with lung damage and nerve damage to the entire radiated area (made worse by an accidental thermal burn.) I had to try out different bras and ended up with a Hanes model # DHHU39. It has no band and doesn't put pressure anywhere on the painful area. The support is not the best but it helps some. I use rolled towels to keep the seat belt off the breast, arrange pillows so I am less likely to roll over on it at night, and only give side hugs. There are oral meds for yeast infections that your PCP could prescribe which might be worth a try at this point. It's a lot of trial and error so I hope you can find something to help.

  • gardengurl
    gardengurl Member Posts: 23
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    Sorry you got nuked too. Thank you for the bra recommendation.