Deciding on Radiation : Photon or Proton?

Thank you and best to you as well.

Thank you for your encouraging words. Best to you.

@dick61 I too am wondering how they treated such a large area with the proton radiation, expecially avoiding the heart area? Thanks for any info.

Left breast cancer. Dr. Recommends proton. But ins doesn’t auto pay. How to get insurance to cover it ?

@ucfsig Best thing is to have the doctor fight for it. If they recommend it to the insurance company and show evidence to the insurance company why they believe it's the best option and the benefits for it. My oncologist has had to fight my insurance company over pretty much everything he wanted to do. Insurance didn't want to cover the targeted cancer medication, didn't want to cover the genetic testing, didn't want to cover the proton beam radiation, didn't want to cover my pain pills...etc...etc. At the beginning of my diagnosis and treatment process it was just constant denial letters arriving. I would bring them in to my oncologist and he would be so angry and have to call them up and demand to speak to the doctors at the insurance company. Asking them how they could possibly claim to know what is better for his patient. They would then cave and agree to the prior authorizations to cover it. I have found that having a great doctor who is willing to fight for you is very important. If you find that they are not willing to advocate for you, switch doctors.

@coco46 Thank you for the advice. I’m sure it made a bad situation worse having to battle the ins company. As I am sure you are well aware, it is very stressful not knowing what is going to be covered to potentially save your life. Thanks again

In had photon whole breast radiation after rt side lumpectomy 2024. Lymphedema was the result. I used Mepitel Film which prevented all most all irritation. Skin did change color and you get a mini lift!
Just finished Proton to my neck lymphnodes, was told by one Dr that insurance would not pay. It was my neck and the side effects can be bad. I paid up front. Insurance denied and on Proton Centers appeal it was approved. I again used Mepitel Film, harder to keep it on a moving neck. Otherwise Proton went well. 1 month out still struggling with pain in lyphmnodes…. Dr. Said it is not unusual. Hard to not think it is the cancer.

@coco46 I want your oncologist!!!

I had TNBC in left breast (1.7 cm tumor) in 2023 and had lumpectomy, chemo and then 30 days of Proton radiation because the tumor area was directly in line with my heart. I had no side effects whatever with the radiation. However, my TNBC came back in the same spot within 6 months. I started Keynote 522 protocol last December and just had a mastectomy 4 weeks ago. My surgeon (Dana Farber in Boston) said I could not have reconstruction because my skin was damaged by radiation. (The damage wasn't apparent to me, but I didn't want reconstruction anyway). They took chest wall muscle with the breast, and my scar is brutally tight. The PA I saw last week took one look/feel and said, "this is tight as heck!!". I'm glad I was offered and accepted through insurance for Proton, as I minimized damage to my heart, but the tight, absolutely hard as a rock chest is pretty annoying. I do not have lymphedema though!