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My experience with proton beam therapy & breast cancer
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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I just finished up proton therapy on my brain in Rochester, MN. I saw 2 breast cancer getting proton therapy. It's in the Jacobson building, it was built mid-2015. the number 507-293-2302.
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1 ReactionI’m interested in your lifestyle diet changes? I did have traditional radiation but it was my right side so I wasn’t concerned about my heart and lungs to begin with. Thanks for sharing @sheilazejdlik
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1 ReactionOne other issue with proton beam therapy. Not all insurances will cover it. Mine denied the use of it.
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1 ReactionHi
I did brachytherapy which is somewhat similar to protonbeam therapy and it was great, very targeted with minimal side effects. My insurance covered it and my doc said at this point both brachytherapy and proton are pretty comparable until they have 10 years of data to compare.
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2 ReactionsWill Mayo Jacksonville, Fl have Proton Therapy any time soon? I know UF Health in Jax has it but all my care has been at Mayo & I would like the option to stay with Mayo, if I ever come to need it.
can you tell me how long before you star a ted feeling the effects of the proton therapy radiation
I was offered a similar radiation protocol by Cleveland Clinic after a lumpectomy. I didn't have it but wouldn't hesitate to if ever needed in the future.
A male friend had external beam Cyberknife radiation for prostate cancer and had zero discomfort, zero side effects and zero after effects. (But had awful side effects from a related Lupron injection.)
I think the word 'radiation' suffers from associations with the 'old' over-radiation and damage of what were the Dark Ages in nuclear medicine but that will change over time.
Thanks for posting about your experiences as I think they're both reassuring and helpful.
Brachytherapy is very different from proton beam. In the former, they insert a radioactive material at the site--like radioactive seeds in the prostate. Proton beam is an external flow of protons that delivers all of its radiation at the target--none before or beyond. I had it at Mayo in MN for both prostate and breast cancer. It is the best way to receive radiation. Amazing technology.
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2 ReactionsI think that the Mayo-Jacksonville shares the proton center with U of Florida, and it would be available to you. I have had it twice, and it is the very best form of radiation. Good hunting.
I had 16 proton therapy treatments after mastectomy and 6 lymph nodes removed (3 positive) and began feeling some skin burning at the end of 16. Had 5 weeks of very red, hot skin with 3 blisters (easily treated with antibiotic ointment). I used Vanicream twice a day, and it worked very well. No dry or peeling skin, etc. The beauty of proton radiation is that no organs, bones or other body parts are radiated. Week 6 was back to normal except for sunburned skin and some heat radiating from the site. My surgeon and I agreed that she would remove only positive nodes or those suspicious if I would have proton therapy--instead of removing all the lymph nodes and facing the risk of lymphedema. Great bargain.
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