radiation vs no radiation research/personal experience, outcomes

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.

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 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!

OK, did the research and both add to risk, which you may have already known, but the higher risk comes from surgery.

"While both node removal surgery and radiation increase the risk of lymphedema, surgery is generally the primary driver, with the risk increasing with the number of lymph nodes removed. Radiation adds to the risk by potentially damaging lymphatic vessels and causing fibrosis, especially when combined with extensive surgery.

@wyowyld
thank you so much! I appreciate your input. I’m going to ask about possibility of doing targeted therapy only. they said it would be 3 weeks of whole breast and then 1 week of targeted

@wyowyld
thank you!

I had a lumpectomy and sentinel node biopsy almost a year ago. Negative node involvement. The cancer was small (1-5 mm )but invasive ductile. The surgeon said the margins were good. The oncologist said I didn’t need radiation. She didn’t say it as if there was any discussion. That was it. It was my left breast , so maybe there’s more concern about damage to the heart. I didn’t question it. I was just relieved. When I see her again, I’ll ask her to explain why.

@dietgourmet i’m so sorry to hear of your problems post treatment. thank you for your input

@roz24
i am grade 3 her2 positive, idk if that is why they want radiation

@crspedsrn
Of course we are all different. I was very surprised and actually a little concerned when the doctor said I didn’t need it. So often when we are given unexpected news, we are a bit shellshocked and only afterwards we wish we’d asked more questions..