Proton therapy

Mariadelpilar

I just started reading about radiation and I’m due to start next week! What I’m reading is that proton radiation is safer than photon beam radiation because you have less side effects and it doesn’t do as much damage to healthy tissue as photon beam. Is there a criteria for this type of radiation? My radiation onc didn’t mention it. I read about here and then did some research. I would really appreciate your input. thank you all. Stay healthy and safe!!

MinusTwo

Maria - please go to the search function on the left and look for this topic. There are several threads with good information & likely some who have made the choice already.

Many (probably most) places do not have proton radiation yet - so that's a major issue. My brother was willing to temporarily relocate several states away to Southern California for proton rads for prostate cancer and he rented an apartment for 5 weeks.

Cricketdog

The center where I received treatment has proton therapy. I was not a good candidate; however, due to the location of my mass. It was far too close to the skin’s surface and my radiation oncologist said it was too risky for me. There are only about 25 treatment centers worldwide so it may require relocation for treatment for many.

Georgia1

Hi Maria. I peppered my doctor with questions about it, and it sounds like the criteria is essentially cancer in the left breast (closer to the heart) and the recommendation is also based on the location of the tumor. The cosmetic results are often worse than with "regular" radiation she said, so it's not for everyone.

Hope that helps but I second the recommendation to do a search on this site.

momof2winsplus

Georgia - Where have you heard about cosmetic results being worse with proton therapy? I have never heard that information before. I am on round 4/33 so interested in finding out (not that I can stop now)

santabarbarian

I had protons and started a thread "proton radiation: share your experiences." My results are excellent... very happy that I got proton rads.

metooat71

I am now 71, diagnosed in 2019. After reading the effects of regular radiation, I started researching different radiation type.

after reading on Proton, and finding that there was a center where I live, I called them and went for a visit.

It took only 2 weeks (10 sessions) to do what regular radiation would take 10 weeks.

It was a breeze, 0 side effects of any kind. I would encourage anyone to read about Proton radiation and understand the difference

and the advantages. , and call them for a consultation about your particular cancer.

RatherBeSailing

While there is a lot out there about proton being better than photon, there are no studies proving it in any cancers, although several are underway.

Most radiation oncologists agree is is better for certain brain tumors or in childhood cancers, although there are some indications there may be late side effects.

In breast cancer, there are often more skin issues. https://www.ncbi.nlm.nih.gov/pubmed/31028831

It is sometimes used in left-sided breast cancers where full nodal coverage is indicated (axilla, supraclavicular and internal mammary nodes) and body anatomy makes it difficult to avoid damage to other tissue using 3d conformal radiation. In those cases, IMRT and VMAT are also options and most large centers have those modalities available.

For what its worth, I attended a breast cancer conference at a well-respected academic cancer center building a proton facility, and asked if they though proton was appropriate for breast cancer. They said almost never. Needless to say, others might disagree. Insurance coverage can be difficult to obtain for proton, so you would probably want to ask your radiation oncologist if you're a good candidate.

Georgia1

Hi Momof2. I heard that from my surgeon, who was also head of the breast cancer center at that time. I didn't push for details; perhaps the link that Ratherbesailing posted is the answer.

ThreeTree

Maria - If there is a center that is feasible for you to get to, it would be well worth a consultation with the people there. Many of the regular providers do not know much about it and "standard of care" can often prevent them from telling you about it or recommending it. My understanding is that it is better for left sided breast cancer, but some with right sided do protons to. I don't believe the time frame is any different than with regular radiation and the skin issues ("radiation dermatitis") are no different. It is safer though, in the sens that it does not produce as much "scatter" and radiate places that shouldn't be radiated. It can help protect the heart and lungs from radiation damage that can be caused by regular radiation - it lessens the likelihood, but does not eliminate it.

There hasn't been as much research with protons as there has been for photons, so it is not considered "solidly" better or safer than regular radiation necessarily, but my understanding is that the research they do have shows it to be better. As others here have said, there are a few threads on this site about proton radiation and you would do well to locate and read them, if you haven't already (I know this is a later response - maybe too late).

Most insurance will decline to pay, claiming that proton therapy is still "experimental". However, Medicare does cover it, so depending on your age, you could always go that way.

I happen to live in a city that has a proton center right at the same location where I received my chemo, surgery, etc. None of my regular providers mentioned the option to me at all, but I independently researched and went for a consultation with the proton radiologist. I opted to go that route rather than the traditional one and have no regrets whatsoever. I had about 33 treatments, including a few boosts, and did not have too many problems. I did develop some fatigue that lifted about a month after I was done, and during the treatment I did get some redness and a small amount of "dry peeling" - nothing like some describe with blistering, oozing,etc. It was pretty much like an annoying sunburn.

One of the other women that I used to chat with there, said that her providers did recommend it and that that is why she was there. She had a bad situation, with a large triple neg tumor and a lot of node involvement, etc. but she got through the proton situation just fine. There was also another woman there with breast cancer whom I spoke with less frequently and she said she did have some trouble with her skin and had to take a break for awhile. She was participating in a study that will compare traditional vs proton radiation. By a computer coin flip she was put in the proton group and was totally happy to do it. I had been offered the same opportunity, but I did not want to risk being randomly placed into the traditional group.

My work insurance initially declined to pay, and they denied an appeal that the hospital made. Knowing pretty much full well from the start that they would not pay, I signed up for Medicare just prior to the treatment. Medicare covered, and I was able to start on time. That was in October. I finished the therapy in mid November, and just recently (about 2 weeks ago), my work insurance came through and reversed their denial of the hospital's appeal and are now sharing the coverage with Medicare.

Criteria wise it really varies and again, I would definitely recommend that you arrange for a consult with a center if you can. I was in the same boat and had no idea if my situation was appropriate for protons, but you will never know unless you speak to the proton radiation doctor. They are the only ones who really know if you are a candidate or not. Contrary to what others have said here, it is my understanding that they use it for breast cancer all the time.

Ladyc2020

Thank you for all the responses. I have a lot of reading and looked at several major cancer hospitals who do offer Proton therapy. Due to the location ( left side, high on chest) and breast size (small) I definitely see the benefits of proton vs traditional. My MO said it isn’t common for breast cancer as most insurance won’t cover it, but is been seen as an emerging treatment in clinical trials. One ongoing clinical trial has my insurance info And are going to see if I can be approved. I speak with my RO this week and have a lot of questions.