Anyone experience Radiation Fibrosis? What helps?

Welcome to connect @ellenholm, there is less risk with the newer technologies, but even if the risk is only 1%. That is little comfort if you are the 1%. I do have some of this, which honestly changes a few things but I have learned to compensate.
I am sorry you are having this issue. Can you tell me more about this, is this a problem in the breast or does it go deeper?

I had 3 week course and developed significant radiation fibrosis involving my pectoralis major and minor muscles, three of the intercostal rib muscles and chest wall. I developed pain, decreased strength and my right shoulder became more anterior to my left. Of course this is my dominant arm. I had Chest MRI which confirmed the fibrosis. Fortunately no lung fibrosis. PT really helped but I do have chronic pain which exercise, heat, and even voltaren ointment helps. My radiation oncologist did note that more long term effects were being reported. I also developed lymph edema after radiation which resolved with help of PT

Radiation fibrosis in my lung popped up on a PET scan in November, a latent side effect. I then thought, "Ah, ha, that is why I have had periods of labored breathing going up/down the steps." But, really I can't complain as exercise really helps - yoga, stationery bike, rowing machine. If it gets no worse I will be grateful, but who knows for certain it won't get worse? Scary thought. cedar75's radiation oncologist noting that more long term effects were being reported was of interest to me. My radiation oncologist pretty much dismissed this question with a vague, general reply about how common it was. I did see an article that lung fibrosis was more common in thin women who had had a mastectomy (that's me) and those who had been on tamoxifen. Another article mentioned that shorter treatments with higher dosages would require additional training/monitoring. I guess time will tell.

I did not have short course, but lung fibrosis is my companion. I also find my self short of breath often. I don’t let it stop me. I might just have to do some things slower and take work in smaller bites. Mine showed up a couple years after. What do your doctors say might help?

They are very pleased because I exercise. Yoga for balance and stretching; exercise bike and rower for aerobics and large and small muscles. I find that really keeps it under control. I underestimated the latent effects of both radiation and hormone drugs. But, so far, I am really helped by exercise. My hormone drug, several months after beginning, reared its head. My whole body ached, my one hand swelled, and I got trigger finger. I thought I had lymphedema in my hand, but the radiation oncologist said all these are the impact of the drug. Oh my goodness, I can't complain when so many others I see in the oncology waiting room are so much worse --- and so young. I am 78 and have had good health my whole life. But, I want to maximize my lifestyle as much as I can. I've never let this depress me....yet. Stay in the present moment!

You are an inspiration❣️ I love how you just keep going, these treatments aren’t always easy, but as I love to say “I am still here 18 years later to whine about it”.
Thank you for being here and talking about your journey.
Does exercise help with the body aches? Walking helped me a lot. Is there a plan to help you with some of these other issues?

I saw my medical oncologist today, for my regular 3 month visit, and she referred me to a physical therapist who specializes in lymphoma to address my hand swelling and also my aching body. She wants me to stay on the hormone drug, anastrozole, which is fine with me if side effects stay manageable. That was her only suggestion. She also said radiation fibrosis was rare with six week radiation treatment; but feels there is an uptick with three week treatments (stronger dose?). Time will tell as I am thinking (right or wrong) that three week treatments are relatively new.

Fibrosis is common with radiation. And lymphadema.

@ellenholm
You might also check with your oncologist about switching aromatase inhibitor. I was started on anastrozole and could barely get up to walk, the pains was so significant. From there I was switched to letrozole and still had problems, and finally switched to exemestane and have been doing well with that. I walk daily for exercise. As far as the hand swelling, it could be a type of lymphedema known as axial webbing which can be helped by a physical therapist who knows about lymphedema and lymph massage. I have had repeat bouts of this following surgeries and radiation and that helps considerably as well as using a "swell spot" which the PT ordered for me. It's used under your bra and helps break down fibrosis in breasts from radiation and softens the area. All the beset to you.

I appreciate hearing of your experience. One must be pretty assertive. For now, I am scheduled to see a lymphedema PT. Thanks!