already have LE, facing radiation, need advice

Brooklyn1234

Hi all,

I avoided radiation the first time I went through breast cancer treatment, and ended up with LE despite only 9 nodes removed. I have been managing it for 10 years with self-massage, physical therapy and a compression sleeve, worn daily. It is mild.

But now I'm dealing with a local recurrence on my mastectomy site and will be getting radiation. I'm very worried about how it will affect my LE. My first appointment with the radiation oncologist is next week and I'm trying to put together a list of questions to ask her. Based on the last decade of experience with the medical profession, I'm not expecting her to be very knowledgeable about LE, or particularly concerned about how to minimize the risk from it (but hopefully I will be pleasantly surprised!).

I'm wondering if anyone has some suggested questions to ask, studies to bring along, or points to make that would help us come up with a radiation plan that minimizes LE exacerbation, if possible.

If this helps: my tumour is 1.6-1.8 cm, and situated on the mastectomy scar of my left breast. It has been shrinking very well under chemo and herceptin, and my oncologist expects it will resolve fully before surgery. There aren't many lymph nodes left in the area, but there were two under my arm that looked suspicious when I was diagnosed wit the recurrence. They were found to be clear on biopsy. The surgeon had been planning to remove them but now that they have been biopsied, I don't know if he will.

I have an implant now, and for the past few years have struggled with eczema on my skin covering the implant.

I don't know what the radiation oncologist will suggest in terms of whole breast, underarm radiation etc. I'm not able to do proton therapy.

Any advice would be greatly appreciated -- thank you!

Brooklyn

Traii

Hi Brooklyn

Sorry to hear about your recurrence in breast.

I completed radiation on my breast for recurrence earlier this year and chest wall and I too have LE on that side. I don't think it's gotten worse but no better for me. They did put a thin gelatin piece layer to cover my skin from burning (mets to skin also) so not sure if that's standard for breast radiation as this was the first time radiation for me as I got BC from Hodgkins lymphoma in 1995 and that was high dose radiation and much much different now.

Maybe ask if they put the gelatin on your skin to protect your eczema

All the best

MinusTwo

Brooklyn - my radiation oncologist was the ONLY doc who took LE seriously. She sent me to a great LEPT and kept following up several years after the radiation treatment. Maybe you'll get lucky with someone who is savy. If not, try to find a really good LE therapist to discuss issues. I'm sure you've seen this site, but it's such a great reference I'm posting the link again. It had questions to ask and things to consider.

https://stepup-speakout.org/

I'm assuming since you're HER2+ that you have a port? That's one of the things that saved my bacon for all the infusions and imaging with contrasts and blood draws.

Brooklyn1234

Wow, that's great to hear it didn't get any worse, Traii! I will definitely ask about the gelatin.

Thanks for the website, MinusTwo. Yes, I have a port, thankfully! It's pretty essential for the second time around.