Impact of Radiation Nine Months Later

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DanceSmartly
DanceSmartly Member Posts: 69
edited March 2019 in Radiation Therapy - Before, During, and After

Hello,

I had 16 whole breast radiation treatments + 4 boosts to the tumor bed (standard Canadian protocol) in February 2018. The first 3 weeks after radiation were pretty miserable. The radiated area was very red by the end of treatment, and shortly thereafter the whole breast peeled, including the areola and nipple. My radiologist classed this skin reaction to radiation as "average". Nine months later, the radiated breast is quite a bit firmer than the other (which is sadly getting pretty saggy now that I'm on Tamoxifen!) and the skin appears almost normal (maybe slightly darker, though the areola is very pink).

I also had radiation fatigue for about three months after my treatments ended. When I went back to work 6 weeks after radiation finished, I would come home in the afternoon and simply collapse into bed. Over the summer, this gradually improved and I would say is now pretty much completely resolved.

All of the above I expected. What I didn't expect (perhaps naively) was ongoing contact pain in the radiated breast. I'm pretty sure the pain is attributable to radiation rather than nerve damage from surgery because it's centered in the lower inside quadrant of my breast while my lumpectomy was on the upper outer quadrant of my breast; the only thing that was done to the sore area of the breast was radiation. Essentially, I still can't bear for that part of the breast to be touched. I will say that it has improved a lot; in the early days after radiation, I couldn't even ride in my husband's truck because it jounced my abused breast too much! Now, at least, direct contact is required to trigger the pain. However, it makes hugging my kids and snuggling with my husband awkward and not very enjoyable.

Anyone else experience similar? How long did it take for the pain to dissipate entirely? I feel that my RO underrepresented the potential for long-term pain from radiation; he didn't seem surprised at all when I told him what I was experiencing during my final follow-up with him three months after radiation. He was very non-committal about how long the pain would last and simply told me to buy a good bra (I did and it didn't help appreciably).

Dance

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited December 2018

    Hi there Dance. My treatment protocol was very similar to yours. I'm over a year out and still get some pain when exercising or hugging. Annoying. In my case the doctors don't think it's from radiation, it seems like it's pretty common after lumpectomy surgery. Continuing the prescribed stretching exercises really helps, as does finding a well fitting, supportive bra. I can tell you that it gets better day by day.

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  • L-O-R-I
    L-O-R-I Member Posts: 114
    edited December 2018

    I had a lumpectomy in April of this year.  After the 1st couple of months I had no pain on contact.  I'm sure if I were harshly grabbed it would have hurt but not when hugging or touched gently.  It's been over 7 months and my lumpectomy breast feels and looks the exact same as the other one.  It sounds like your pain, DanceSmartly, is from your radiation treatments.  I refused them and have no pain.  

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  • Falconer
    Falconer Member Posts: 1,192
    edited December 2018

    Dance, I recently started seeing a physiatrist, a doctor who specializes in nerve damage and treatments that help with that. The physiatrist is a cancer rehab specialist so he's very knowledgeable in this field. With that said, he gave me multiple diagnoses without saying that one particular thing caused my problem. Th trauma to the affected area can cause problems, period. How to treat them is the next question. Can you look for a cancer rehab nearby or a physical therapist schooled in treating cancer patients? The first PT helped me to resensitize the damaged area by rubbing a soft towel on the area to restimulate the nerves. Makes sense, right?

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  • DiagnosisDisruption
    DiagnosisDisruption Member Posts: 108
    edited December 2018

    I had sixteen blasts and then they decided to not do boosts because it would cause "chronic pain", ending in August. I hated radiation more than any of the chemo. Hated the machine, the daily visits, having to lay bare breasted on the stiff table, the doctor who said this was the "easy part"... I turned pink on Day 1 and it's still there. It was so swollen and so painful and the rad doctor kept just nodding his head, I took myself to the ER after six weeks just to prove a point. I was popping surgery pills for the pain and it wasn't touching it. I booked an appointment with the surgeon to have it cut off (I'd had a lumpectomy and re-excision).

    Then someone mentioned breast lymphedema. I went to a specialist who does Lymphadic Drainage Massage.

    Holy cow, what a difference. It can stay now. It's still twice the size of it's counterpart, but it's not hard as a rock and painful. I don't know why no one else brought it up, and I ended up with it in a roundabout way, but this should be standard protocol.

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  • DanceSmartly
    DanceSmartly Member Posts: 69
    edited December 2018

    Thanks for the feedback and ideas, all!

    Falconer, I have never heard of a physiatrist; will have to look into that!

    DiagnosisDisruption, your situation sounds terrible and I am really glad you have been able to find some relief through massage! I am pretty sure that I don't have breast lymphedema as there is no evident swelling and my breast is only firm, not rock hard.

    Dance

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited December 2018

    DanceSmartly - I'm in a similar boat it seems. So much pain in my L breast, even tho rads ended on Halloween. Have Rads Fibrosis (breast & dermal) and also Breast Lymphedema. Ugggh. The pain, underlying hardness (like cement) and the tissue swelling is awful. I have to wear a compression garment (Swell Spot) 8-12 hours a day to help reduce the swelling and work on breaking up/softening the Rads Fibrosis.

    Like you mention, I too have pain on the inner lower/central area of my breast, even tho my Lump/Excison was on the upper outer quad. It's puzzling.

    Have you been evaluated for Fibrosis? Do you see a PT?

    From what you describe it sounds like that could be part of what you are experiencing.

    One of the newer things that has also helped is my bi-weekly visits to my Cancer Rehab PT, who is just starting to use lymphatic drainage on me in bits and pieces as I can tolerate. It's encouraging to hear that DiagnosisDisruption had good results with this and hopefully this is something that you'll be able to add to your treatment going forward at some point.

    IMO, if you haven't been seen by PT yet, it would be good to ask your team to refer you to one to see what can be done to help you. I'm so sorry you're going through this. Fingers crossed that someone can offer you some substantial relief in the near future.

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited December 2018

    Oh, also, if it turns out that Radiation Fibrosis is something you're dealing with, there are studies on the benefits of Vitamin E and Pentoxifylline for its treatment. Just fyi. :)

    https://clinicaltrials.gov/ct2/show/NCT00583700

    https://www.ncbi.nlm.nih.gov/pubmed/16260695?dopt=Abstract

    https://integrativeoncology-essentials.com/2013/02/fight-prevent-breast-fibrosis-after-radiation-therapy/

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  • gb2115
    gb2115 Member Posts: 1,894
    edited December 2018

    I still have pain almost 2 years later. It's not severe and I manage, but it's there.

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  • Gusta
    Gusta Member Posts: 10
    edited December 2018

    I'm so 'happy' to find this thread! I had 16 treatments in October. I still getting shooting pains and achiness on and off, and I'm trying hard to understand what's going on in my poor battered breast. I had a solid lump form during rads (feels like there's a chunk of microwaved chicken in there!) and an infection two months later - sudden flu-like symptoms one evening followed by a hot, swollen, painful, red boob, and a swollen lymph gland - that responded to antibiotics, but the lump has changed shape, making my breast look pretty weird. Ultrasound showed fluid and some other blobby thing underneath, but I'll need another ultrasound and a mammogram in a few weeks, once the infection isn't obscuring the picture.
    Thanks to you ladies, I'm going to read up on lymphedema and radiation fibrosis, which nobody mentioned so far. And get back at those stretching exercises, which I thought I was done with, because I got my whole range of motion back after surgery. Isn't it crazy how obvious an idea is AFTER someone else says it??? :P
    (P.S. Dance, your description of the skin reaction during treatment is so validating for me, I don't have the right words; just so similar, and the same lack of support/information/warning. Thank you!)

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited January 2019

    Gusta --- I finished in Oct and am still having such a hard time. My lymphedema therapist said that around the 6-8 week AFTER rads finishes is when most people feel the tightening and restriction in motion, so it makes sense that at first you had a good response and felt improved, only to have it snap back again. Hang in there. I'm told it will get better in time. Keep us posted on what happens when you see your Cancer Rehab PT. My fingers are crossed for you that they can help. I look forward to seeing my twice a week. She's a godsend in my pain relief! :)

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  • 2002chickadee
    2002chickadee Member Posts: 129
    edited March 2019

    This is a helpful thread! For those who have been diagnosed with RIF, how did they know? I'm having a lot of pain and tightness in my arm/shoulder/chest, I'm 12 weeks out from last rads. I've done six sessions of physical therapy and daily stretching for longer than that (since mid-radiation, really) without much relief so far. I'm wondering if there are other things I should be trying, or if I should contact my RO about prevention of RIF since I already have so much trouble with that zone. I had thought of fibrosis as primarily a concern for the heart/lungs, but now I'm wondering about it impacting skin/muscle/tissue/etc.

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