Anyone forego radiation? Research, personal experience, outcomes

I was diagnosed with Stage 1/grade 2 Invasive ductal cancer in 2022 - age 69 at time. Oncologist initially recommended just radiation followed by Anastrazole for 5 years. After lumpectomy, my Oncotype score came back high - 43 so he strongly recommended chemo followed by 5 weeks daily radiation. Completed all - no lymphedema. I did stop Anastrazole after 3 months choosing quality of life over side effects. So far so good (3.5 years post treatment ment.

i’m considering refusing radiation after having lumpectomy, chemo, herceptin due to high possibility of developing breast lymphedema. Hoping to get some input

I have some edema (slight swelling) in the breast that was irradiated. The doc pointed it out--I don't think I'd have noticed otherwise. I did not have my lymph nodes removed (I was 80 at time of surgery). However, I thought it was lymph node removal (not radiation) that caused lymphedema.

I think it is smart to talk to doctors and to consider skipping radiation if all margins were good and your cancer type is good and to consider family history of breast cancer. I got lymphedema in right arm and it is swollen, I also got a second DCIS from radiation and I have heart and lung damage. I know a woman who refused radiation and I did not argue with her. Talk with your doctor and other people, and do research yourself if you are able. Does the benefits outweigh the risk is the question to consider with any medical treatment? I got an ulcer from Ibuprophen for arthritis symptom, so I had to stop taking them, so I don't consider any treatment not to have risks.

Given that you are doing so many other intensive therapies, potentially ask the doctor to describe the benefits of adding radiation to the mix, especially since you don't have much if any lymph node involvement. When I asked why would I need radiation in addition to chemo, I was told that with my cancer type amd situation, chemo did not seem to work so well with lymph nodes - I had extensive lymph node involvement.

@olderbreastcancer
i am struggling in the decision because im just not sure the risk of the distinct possibility of the breast lymphedema and potential arm lymphedema is worth having the radiation

The trouble is there are so many variables. But talking with oncologist can help considerably. You might notice the doctor leaning toward one treatment, but will also tell you other options. If he's a good doctor that is; and you have to decide that by observing and listening. We're all different, but I've not heard of many (Any?) doctors who do not always say radiation is next and just assume you will go along with it. Double negative there. Sorry. I just think doctors try to cover themselves. All of them.

I'm almost 78 and was diagnosed with Stage 2b ILC (Invasive Lobular Carcinoma) at the end of May 2025. I had breast reduction surgery on April 13, 2025 and although I had a collapsed lung after the surgery was pleased with my 38 Bs after too many years of lugging around my 38 DDs. Then at the end of May 2025 I got my diagnosis from my family doctor as he read me the pathology report. I was referred to a cancer centre where I met w/ a surgeon and decided on a double mastectomy w/ removal of 3 lymph nodes. Surgery went well and no cancer was found in any of the 3 lymph. (Stage 2b was my diagnosis b/f surgery b/c of the size of of one of my ILC sites.) I had read quite a bit about ILC and decided to not have any other treatment. I am otherwise healthy and want the remaining years of my life to have quality. I am not interested in living my life w/ any of the possible effects of radiation, chemo, or hormone treatments (aromatose inhibitors).

I was 72 when I was diagnosed with stage 1, not remembering all the details at this hour, but it was in the duct, hadn't reached the lymph nodes, and was told there was no need for chemo, radiation was optional and I would be on an AI for 5 years. I have scar tissue in my lungs and was told they couldn't protect my lungs from the effects of the radiation. The oncologist said the detriment of not taking radiation was .05 percent greater per year - so I opted out and just went with the AI.

I understand the tough decision. I was low risk of recurrence and declined the AI's, but opted for the 5 targeted radiation session option. New studies show it is very effective with lobular cancer, apparently even more so than ductile. I used mepitel film, (cancer was in left breast), had no skin reactions and about 9 months out now no lymphodema or problems at all. Trust your gut, make your decision and then move on. Obviously your concerns are very valid. I have not seen a stat, but I'm sure they exist, as to the percentage of women who get lymphodema after radiation, and that is a number I would personally weigh into my decision. Also, is radiation what causes it, or is it actually the surgery itself? I am not confident not having radiation means you won't get lymphodema. My Dr. implied the risk came from the node removal surgery. Either way, I wish you all the best and now I am going to go pull stats!