Deciding on Radiation : Photon or Proton?

I had a left mastectomy on 4/1/21 and, after healing from surgery, had 16 PROTON BEAM radiation treatments at MN Mayo. Proton radiation is the safest form of radiation because the protons release all of the energy at the target and nowhere else. I had 4-5 weeks of sunburn and used Vanicream twice each day. No skin peeling, no damage to heart or lungs, etc. Toward the last few treatments, I experienced some fatigue cured by afternoon naps. My radiation treated the entire upper portion of my let chest, the armpit and the underside of my left arm from the axilla to the elbow. I had no other problems. Don't hesitate to choose proton radiation. It's the safest and most effective!!! I am 84+ and doing fine.

Thank you. And so glad you are doing fine!

I’m wondering how the beam finds the target when such a wide area is being addressed. This would be after a known target is surgically removed in my case so it’s a preventive treatment in case there are other microscopic cells in the “ whole breast “ area including nodes.

Was this addressed to your situation.?

Before your radiation treatment begins, a radiation oncologist, a medical physicist and a medical statistician calculate exactly where to aim the beam. The beam paints the entire area. I had radiation aimed at chest area and then the unit turned about 30 degrees and irradiated the area where all the lymph nodes are located. My radiation was also preventive. Don't worry about where the protons go. Your team will calculate the entire treatment and aim the radiation appropriately. Think a beam moving back and forth across the target AREA. Ask the proton oncologist to explain it to you. It's the safest and best way to treat you. Google proton radiation. Trust me.

I agree with the above - proton is supposed to be way less radiation to the heart and lungs. I did a lot of research on this b/c I thought I would need radiation to the left but fortunately in the end I did not. With that said, if you will need radiation on the right breast, insurance will not approve proton. Proton is way more expensive and only some ins carriers will approve it, and only if there is sufficient reason to show that left breast regular radiation would damage the heart and lungs. If you are trying to do proton for the left breast - there are only a small group of places in the country that do it. Its very important to find a place with updated machines AND lots of experience, b/c there is way less room for error with proton than regular radiation. Northwestern Medicine in IL was one of the very first to offer proton, so lots of experience, they're a top notch cancer place. Of course Mayo MN (altho surprisingly they started proton after Northwestern) is also great. If you need to get more info - call https://www.floridaproton.org/ . They're also highly rated, lots of experience and service the Mayo clinic cancer patients in FL. Explain your situation and they will provide helpful info about what you may or may not qualify for, etc. Good luck in your treatments, sending positive thoughts you find and receive all the treatment you need.

Thank you. It’s right breast.

I have access to either geographically.

Of interest is that U PENN is now conducting a clinical trial ( nation wide including MSK) randomly selecting those clients needing radiation to either Photon or Proton modalities to SCIENTIFICALLY LEARN if there are benefits or bests . The “science” has not yet determined this .
I just read some publications involving Dr. Mutter Rad onco at Mayo who is looking for the sweet spot to help us all. They are still asking THE question.

Very complicated to make these decisions….

A photon rad onco on my team suggests no benefit for me to have proton. I am seeking consultation with Proton onco that she referred me to. Also checking in with MSK.

Thank you.

I debated after my lumpectomy whether to go back for mastectomy or to have radiation. I opted for and had photon radiation to the left breast a total of 25 treatments. Invasive ductal carcinoma, ER+, HER2-, node negative. I completed treatment in May 2023. So I am a little over a year out. I had some blistering and redness the last week, I used triamcinolone cream which helped resolve it. I was tired during treatment but bounced back within a couple of weeks. That breast is tighter than my other breast now and there is no hair, not even peach fuzz on that side of my chest. I have considered going back for bilateral mastectomy and reconstruction, my plastic surgeon said because the skin has been radiated he would have to take a graft from my latissimus dorsi in my back to cover the implant. If I had not done radiation and gone straight for the surgery I would not have needed the graft. So there is a loss of skin strength for future surgeries. I hope that helps.

The person above who said that insurance does not cover right breast PBR is incorrect. Mine was covered 6 months ago. Check with radiologist. I strongly recommend PBR but check with radiologist regarding contracture. Also, regardless of your choice, I also strongly recommend that you use Mepitel Film , not Mepitel One. This will protect your skin better than any cream or goop. Downside is you can’t buy locally except Mayo and from Canada. I will try to attach the handout Mayo is now giving to all bc rad patients.

Thank you for the information. Much appreciated. I do know other right breasters that have been covered. Thinks are always changing so no coverage was likely once true.

I am a 73 yo with ductal carcinoma in the right breast, triple positive. After chemo and lumpectomy, I had 21 days of photon radiation. I never experienced fatigue, or any skin issues at all, and I wouldn’t hesitate to recommend it. Good luck!

I had radiation treatment after my chemo and bilateral - what I found interesting about the process was they made a mold that I laid in for treatment that kept me in position so the beams only went to a specific area. The technician would pull from a specific rack my mold for my treatment which kept me comfortable and still during the treatments. I'm TNBC BRCA+ and I believe my treatment was also preventive. During my bilateral it was determined I lymph node involvement. Good luck.