To Radiate or Not?

mtspacekace

I just had a skin sparing bmx with immediate tissue expander placement. Today, I met with my radiation oncologist and they are recommending radiation because:

1. Of my age. I was 38 when diagnosed with multi focal HER2+, er/pr-.

2. I did 6 rounds of TCHP and did not have a complete response. There was 1.1cm left.

3. The margins were clear, but the cancer that was left was extremely close to the skin (less than 1mm).

My nodes were clear. So one good piece of info.

He couldn’t give me any stats as to me doing radiation, or not doing radiation...because apparently I am a rare case. Does anyone know of someone in this situation? What would you do? I am leaning towards doing the radiation...I want to know that I did everything I could do, so there are no regrets in the future.

My oncologist also mentioned normally they would do radiation for 5 weeks, but there are some studies being conducted on just doing it for 3 weeks, but there is no results on that yet. Anyone have any insight there?

Also...I’m wondering how people fared doing radiation mid-reconstruction with tissue expanders. Did anyone have major problems and not able to have implants put in?

I live 2 hours from where I will be having radiation, with bad roads and winter weather I have been trying to find an affordable and safe rental or place to stay for the 5 (or 3) weeks... lots of people who had cancer many years ago have reached out to me with housing resources and help from the American Cancer Society, but it seems these programs no longer exists. Any advice there?

7of9

Tough because I did get capsular contracture from radiation...but that was after I recurred. If I'd done it ( radiation) the first time I might not have had to deal with worse 3 yrs later. I was 40 first time. 43 second. Im now 9 yrs out.

Salamandra

I had a very different and more run of the mill situation but I nevertheless had a lot of initial resistance against radiation and I think drove some medical friends a bit crazy with my skepticism. In the end I had to admit that the evidence that radiation is good medicine and could save me from worse headaches down the road was very much there. The actual experience was fine.

I'm sorry you're having a tough time with the logistics though!

One really helpful resource that I would say you should call yourself is Sharsheret. It's a Jewish organization but for anybody from any background. They assigned me my own social worker who could not only give me emotional support but also did legwork/research for me. They would hopefully be able to help you figure something out. Here is the link to the "Contact Us" form.

The research part of the task - looking up organizations and sources of funding, making applications, etc, is also a great thing to assign to someone in your life who wants to be supportive of you but doesn't know how.

mtspacekace

Thank you! I am looking into lots of resources. I have also found joeshouse.org. It is a nonprofit that helps cancer patients traveling away from home for medical treatments find a place to stay, or discounts at hotels.