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Pain in Breast 7 years post Radiation

brutersmom Member Posts: 877

I am seven years post radiation therapy on my right breast. I am very active and work out regularly. I have had very few issues. All my mammograms have been normal except showing fibrosis of the right breast. I was discharged early from my cancer doctors because I was not able to tolerate Hormone Therapy. Over the several last years, I have been noticing decrease strength in my right arm along with hardness and pain in what feels like pectoral muscle. I am also getting muscle spasms in the muscles at the top of my ribcage with certain movement. All these areas are inside the radiation area. I mentioned it to my GP and he didn't seem to know what to suggest. I have little confidence in the Cancer clinic in this area. After radiation, I would have pain with reaching for things. It was this group that got me asking the right questions and got help for that. I am hoping that someone can share some incites that will help me ask the right questions and get me to the right physicians so that i can get some relief. I will add that strength exercise and daily stretching do keep it managed. This issue is I am finding I need stretch more and more.


  • MagicalBean
    MagicalBean Member Posts: 192

    Hi, brutersmom. Good question. I am also about 7 years post rads. The strength issue/hardness has not appeared but I do get occasional spasms in the radiation path when I move just right. If I stretch a bit it releases. How odd.

  • parakeetsrule
    parakeetsrule Member Posts: 605

    I'd be checking in with an oncologist to rule out a recurrence.
  • brutersmom
    brutersmom Member Posts: 877

    Mammogram negative. Oncologist won't see me without a positive diagnosis. I fought really hard after radiation to get to see the lymphodemdema specialist for scaring from radiation. I would cry when I reach for things. Pain was a 10. This group helped me understand what was going on back then and educated me ask the right questions. I am hoping they can do it again. I need to push for something more testing I just don’t know what.

  • ratherbesailing
    ratherbesailing Member Posts: 118

    Brutersmom, I am also physically active and have all those symptoms - and have had them since shortly after completing treatment. And radiation fibrosis is definitely a factor - the damage can be slow to manifest.

    If your cancer center is unwilling to address this issue I would run, not walk, away from them and find a physiatrist MD who can assess your situation. They can order PT to help with stretching and strengthening. You could ask the physiatrist for a referral to a lymphedema therapist (LT) for evaluation, which is not at all an unreasonable considering the treatment you had and the weakness you are experiencing. Just understand that the two modalities - PT and LT - are complementary but different as the LT isn't working on the fibrosis, but rather ensuring that lymph flow is optimal. So if there is no lymphedema PT alone would be appropriate.

    Finally, your primary care doctor could likely also order the therapies, but this is what physiatrists specialize in. And some of them specialize in post-cancer treatment care.

    Wishing you the best.

  • 7of9
    7of9 Member Posts: 474

    late to the party here....6 yrs post radiation and between desk job and fibrosis....I find I need to stretch more and more and more.

    I am having surgery next week to remove submandibular salivary gland due to stones from dry mouth. It hurts after most meals now. Been putting up with it for over 2 1/2 yrs. All the doctors say it is not related to radiation despite the onc radiating part way up my neck that side because my recurrence 6 yrs ago was 10/14 nodes in axillary. I'm not sorry they were that aggressive as I had axillary removed (10/10 positive), plus 4 nodes ( negative) outside it, complete hysterectomy. The treadmill, hiking, vacations and sleep and anxiety meds helped til this yr. Neck aches, back aches, tinnitus...they only scan ultrasound when I insist which is disturbing but I feel great most weekends and vacations so some of it is stress. Getting older too combined with 6 yrs on arimidex never missing a dose but maybe 3 days. Im getting tired... but son is only 13 and my mom is 76 and I'm an only child. You ladies and the good Lord have dragged me through some really shitty days.

  • brutersmom
    brutersmom Member Posts: 877

    I have come bad to this site because I am now dealing with metastisus to the pleura of the lung. It turn out I was dealing with pain from 2 issues. I hit crisis mode in January. My Cancer journey is its own story. I was discharged from my oncologist 6 years ago when I had issues with aremidex and chose to stop. I have a new oncologist. Once the new cancer area is under control I will deal with the issue then. Most of the pain is gone since starting back on letrozole and Ibrance except for one muscle.

  • dani444
    dani444 Member Posts: 215
    edited September 2023

    Brutersmom- I am so sorry to hear of your metastasis, cancer is a bitch… I came here looking for some information and input on some pain/ discomfort I am having. It sounds a lot like what you reported in your original post. I am now 4 years out from rads, I hate late cording about year 3. Went to lymphedema therapist for that. Now I am progressively getting worsening pain in the muscle I can best describe as coming from my chest wall and running Under my arm. I also get a burning pain in the muscle in my back up to my scapula. I am also having discomfort in my bicep where the cording was and my whole arm is weak and feels like it weighs 200 pounds. It is worse if I try to pick up anything. I have tried stretching but if I life my arm above my head my middle and ring finger go numb.
    Sorry this is such a long story but I am wondering who to see and what testing to seek. I had imaging done when I had the cording but I worry because I had lobular and I know it can hide. Any advice would really be helpful.

  • maggie15
    maggie15 Member Posts: 844

    @dani444 , I'm sorry that you have increasing pain 4 years out from rads. Your pain symptoms sound like they may be due to fibrosis of the connective tissue due to radiation. That can gradually worsen for years after radiation ends. I'm 2 years out from rads but thanks to the combination of surgery, radiation and a thermal burn my breast and right chest/underarm area is still quite painful. The burn surgeon explained that the pain comes from nerve endings being compressed by scar tissue. He used a laser to help break up painful scar tissue on my face and hand but its use in an area near a former malignancy is contraindicated. My breast surgeon commented that cancer treatment can cause these problems but unless there is other evidence suggesting recurrence the oncology team doesn't deal with it.

    I ended up with a pain specialist/palliative care doctor who prescribed a combination of acupuncture, PT, LE therapy and gabapentin to make things more tolerable. There is also a physiatrist in his office whose medical specialty is working with all aspects of a patient's physiology to improve physical functioning and relieve pain. One of those doctors might be a good place to start.

    I hope you can find a doctor to help you. If you are worried about recurrence, contact your MO.

  • brutersmom
    brutersmom Member Posts: 877

    Dani and Maggie I call radiation the gift that keeps on giving. I think some of my issue is radiation fibrosis. I work out 4-5 days a week. The interesting thing for me is not to long after I posted this I was at the gym and one of my coaches had us do pull ups. I could not do them so he had me hang from the bar. I did it multiple times that evening. The next day I noticed I had much more movement. I started noticing my strength increasing. Now I do it every couple of weeks when I go to the gym.