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.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Justin McClanahan, Moderator | @JustinMcClanahan | Nov 6, 2016

@sheilazejdlik, first, welcome to Connect. Second, thank you for your very thorough post on Proton Beam therapy. The information and story that you shared was great to read about. I am confident that other members will find this information and words of encouragement and wisdom helpful.

Shelia, may I ask what brought you to Connect? Have you checked out some of the other discussions taking place in the Breast Cancer group? I think your positive outlook may help other members of Connect find comfort and common ground. If you don't mind sharing, how is your treatment going today and how are you feeling? You mentioned other lifestyle changes that also help, how have you used those changes to help in your recovery?

kat9606 | @kat9606 | Apr 12, 2017

I know Mayo Scottsdale is using Proton Beam to treat breast cancer.

Glori | @elvandi | Apr 16, 2017

Thank you for this information on Proton Beam. I did know that regular radiation can damage organs on the left side of your body. Proton does not cause as much damage. There is a institute in Jacksonville, Fla. that is the Proton Institute. I wonder if insurance will pay for this type of treatment of radiation. Also, did you have the Proton treatment and what is your experience with this type of radiation ? Thanks for your reply.

kat9606 | @kat9606 | Apr 16, 2017

I believe insurance covers it, of course depending on your plan. I had brachytherapy which, like proton beam, is very targeted and less invasive. I know Mayo uses proton over brachytherapy, proton is newer technology. Time will tell if its the best option but it sounds promising.

kat9606 | @kat9606 | Jun 5, 2017

Thanks for the info. I've heard good things about proton beam therapy and I know mayo scottsdale does it for early stage BC. I had brachytherapy which is also very pinpointed radiation with minimal effect on the healthy tissue. Time will tell if proton beam therapy or brachytherapy can get better or similar results. I believe o both have been around for 10+ years. Brachytherapy is twice a day for five days with very minimal. In fact I only had a slightly red area the size of a 50 Cent piece.

Glori | @elvandi | Jun 13, 2017

Where is brachytherapy radiation preformed and how long ago did you have this procedure.

kat9606 | @kat9606 | Jun 13, 2017

In reply to @elvandi "Where is brachytherapy radiation preformed and how long ago did you have this procedure." + (show)

I had it done at the Virginia G Piper Cancer Center in Scottsdale, AZ

Glori | @elvandi | Jun 14, 2017

In reply to @elvandi "Where is brachytherapy radiation preformed and how long ago did you have this procedure." + (show)

thank you, I am near Jacksonville, Fla, and will seek the Proton Institute there.

kat9606 | @kat9606 | Jun 16, 2017

I know the Mayo Clinic Scottsdale has the Proton Beam and has been using it for breast cancer.

bettyjpt | @bettyjpt | Oct 28, 2017

Hello, My case is almost like yours. It was 1.2 cm. I am going to Rochester, MN and have had the lumpectomy The proton therapy now is three day's! I am having a hard time deciding between the proton therapy, or no therapy!? She got all the cancer and there was nothing in the lymph nodes. Any advice?