My experience with proton beam therapy & breast cancer

Posted by sheilazejdlik @sheilazejdlik, Nov 6, 2016

I was diagnosed with breast cancer in February 2016 - Stage 1A, triple positive, 1.5 cm, left breast, sentinel lymph node was negative. I chose lumpetcomy with radiation. I want to share my information to let women know that if you need radiation, the option you might want to consider is Pronton Beam. I live in Minnesota and had interviewed University of Minnesota, Piper Breast Center and Mayo Clinic. They all offered the same treatment which is called respiratory gating which means they take a CT scan of your body resting and then breathing and for most people your left lung and heart move out of the way for the radiation; however, for me, that was not the case. The radiation oncologist informed me that they would have to radiate 5% of my heart, 20% of my left lung and 7 ribs. I am healthy, not on any medications, BRACA I and II negative and was not going to subject myself to this option. I started researching options and found Proton Beam. Proton Beam has been used for over 10 years to treat pediatric brain tumors and prostrate cancer as well as other cancers. Proton Beam has been studied in Stage III breast cancer but not Stage 1 and II. Northwestern Chicago Proton Beam Center was in the processing of conducting a study for Stage I and II and they accepted me as a patient. I was so grateful because Proton Beam will only radiate the tumor bed and not your heart, lung or ribs. The treatment was once a day for 10 days vs. the other option once a day for 6 weeks. We know that radiation to our bodies leads to long term issues such as secondary cancers. Therefore, Proton Beam is the best option if you need radiation. When I was at the Proton Center in Warrenville, IL, my doctor informed me that Mayo Clinic would be getting the Proton Beam; however, I am not sure if they are using it for breast cancer. I hope this information is helpful for women who need radiation and what I have learned through my journey is you need to be an advocate for your health and please get two or three opinions before making a decision. In fact, all three institutions did not tell me about Proton Beam as an option I had to research and learn it on my own. Lastly, remember that your cancer will be treated with traditional options - chemo, radiation, surgery - but that is only part of the treatment option because you also need to change your lifestyle - diet, exercise, etc. - to kill those circulating cancer cells and prevent a reoccurrence in the future.

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dick61 | @dick61 | Jan 13, 2023

In reply to @marcia115 "I have stage 2 breast cancer and had surgery, in two weeks I start proton beam..." + (show)

Yes but Vanicream worked perfectly!

hsl | @hsl | Jul 26, 2023

Unlike radiation to internal parts of the body,radiation therapy to the breast usually does not cause terrible side effects;. usually, some fatigue and maybe some skin sensitivity, like a mild sunburn. A small early stage cancer
should not be difficult to treat. I'm not sure of the latest recommendations about radiation and some kind of oral estrogen blocker. Not all insurance companies will cover proton therapy, especially for breast cancer; it is more important if the tumour was on the left side.

Perhaps get one or two opinions. 3 days of a not difficult therapy is another bit of security.

Sue Ellen Murrey | @semurrey | Jul 27, 2023

Thanks for sharing your experience with proton beam. I was diagnosed Nov 2022 with ILC and finished 19 rounds of traditional (right breast) breast radiation at Dana Farber. I was convinced that Proton Beam was safer and scheduled consult at MGH Proton Beam (first one) Center but after team reviewing my cancer, films, biomarkers, placement etc they determined proton beam would NOT be the best course of treatment. They mentioned that unfortunately Proton Beam very misunderstood as Holy Grail and many centers encourage it over traditional as they do need to support their centers. I think there is a smart use of Proton Beam and a friend's daughter used it for brain radiation but not in all cases. Just wanted to weigh in with this experience.
Love this group! xoxo

baylaurel | @baylaurel | Jul 27, 2023

In reply to @semurrey "Thanks for sharing your experience with proton beam. I was diagnosed Nov 2022 with ILC and..." + (show)

Sue Ellen, Could you elaborate a bit as to why proton therapy was not the best choice in your case. I recently had left breast mastectomy and 1 of 3 positive nodes for ILC stage IIB. I have contacted a couple of proton therapy centers in western US but have not been able to consult with their doctors yet. I am concerned about effects of traditional radiation on heart and lungs ( I have preexisting heart lung disease). I met with traditional radiation oncologist and it felt like she might be developing a somewhat compromised treatment plan to limit impact on heart and lungs. She also indicated the benefit of proton therapy wasn’t worth the effort to relocate for several weeks. Thank you for any insights you can share.

Sue Ellen Murrey | @semurrey | Jul 27, 2023

Hi @baylaurel- sure - clearly I'm not an oncologist but at MGH they felt proton beam was not the "best" treatment based on my cancer - which could include location, size, tumor markers, my age (58yrs), stage 1, no nodes, 1.8cm. I wish I had more details but my point is I would not hold up treatment if you feel confident with your current radiation oncologist as I really think if they felt proton beam was the best strategy (like in pediatric brain tumors, spine) they would defer to this second opinion. However if it makes you feel better to at least get a consult like I did I would certainly pursue. I hope this helps and good luck. Keep us posted! xoxo