Proton Radiation

Hello, NVB. I don't quite understand. Is it the case that the doctors advised against partial breast radiation because the cancer is aggressive, and that is why they advised both chemo and whole breast radiation? As far as I know, proton therapy is given as partial breast radiation (unless something has changed since I looked into it). I was told that as such, proton radiation affects a smaller area, but the skin effects in that area are very similar to photon radiation. (In my case I ultimately chose the usual whole breast radiation because there wasn't enough data showing that partial was safe for ILC. I was worried, but had no broken skin and have no obvious discoloration.)

Hi NVB,

I was also told I wasn't a candidate for partial or accelerated radiation, but I had done a lot of research on those types beforehand and knew I might not be because of issues with margins, isolated tumor cells found near my lymph nodes and, in one case, being under 50 yo.

That said, it's always worth a second opinion if you're not comfortable. Just make sure to see a RO who is in another area/hospital system so they're not averse to contradicting the first one.

Did you ask your RO about protecting your heart? I'm also fair-skinned with a left side cancer and we are going to do the breath hold technique, which research has shown can help lessen the effects on the heart.

I am curious if anyone here has had experience with proton therapy though and hope someone chimes in! I thought I read on the MD Anderson site though that only 7 cancer centers in the US have the equipment for it--and it seems like it's been more used for other types of cancers--so thay may be why you're not getting much response.

When I looked into a proton trial in 2011, I found that the radiation oncologist involved in the trial answered my questions about the therapy well, but was reluctant to give me advice on how to choose. It seems that's how the doctors are when a trial is in question. Finally another doctor told me that the radiation oncologist thought I should do whole breast and not the proton trial (partial).

Have the radiation oncologist explain what they can do to protect your heart. This is a very precisely planned therapy and they have various ways to work around the heart.

For what it's worth, I was also very worried about my skin, but I came through it really well. I think that a healthy diet, good sleep, and my relatively young age all contributed to good healing between radiation sessions. That seemed to be more important than the fact that I sunburn easily. And that makes sense because radiation damage is not actually a burn, but too-slow regeneration of skin. I hope this encourages you.

I looked into proton but because mine is on the right side they didn't want to treat me with proton, they are generally only doing it for left side where I go to avoid the heart. It was going to cause weeks of delay in treatment for me to try to work with them to get around that (and may still have not resulted in me receiving proton.) But I am curious to find out how it goes for you- I know this is becoming the standard in some types of cancer but breast cancer it isn't yet offered very often. I have heard that it can be at least as bad and sometimes worse on skin, though, but better for organs. I came through normal radiation with no skin complications and I have very sensitive skin. I also used Mepitel between treatments.

I am interested in a clinical trial for this photon treatment. I am waiting for the consultation appointment to learn more. I will post when I hear and learn more about the benefits and constraints of this radiation therapy. I know my radiologist was planning 6 weeks of complicated radiation, my right side axilary, sternum, and collarbone to include internal lymph as well as chest wall. I sure wish we had someone who underwent this tratment.

I have an appointment to see their Dr's on Aug 15th. I hope I am up to a huge 5.5 hour drive one way 4 days after my 5th chemo and 3 days after my port. I plan to drive back that same day. We will see, I sure hope I can handle it.

I informed my current radiologist about my interest in this He hasn't replied back to me yet.

I will update everyone when I hear.