1. < Breast Cancer

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.

dick61 | @dick61 | Oct 27, 2022

Finally, a fellow proton beam advocate! I had 16 proton beam treatments in May, 2021 after my mastectomy and did fine. Glad you did an intelligent search. I was treated at Mayo in Rochester MN. Hope you are doing well.

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dkubacki | @dkubacki | Oct 27, 2022
In reply to @dick61 "I had 16 proton therapy treatments after mastectomy and 6 lymph nodes removed (3 positive) and..." + (show)
@dick61

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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thank you for the info. did you get really fatigued? I have to drive 2 hours to the treatment so...

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2 replies
dick61 | @dick61 | Oct 27, 2022
In reply to @dkubacki "thank you for the info. did you get really fatigued? I have to drive 2 hours..." + (show)
@dkubacki

thank you for the info. did you get really fatigued? I have to drive 2 hours to the treatment so...

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No, I actually walked every day after treatments. Some fatigue during 5-week recovery post-radiation. You will do well!

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dick61 | @dick61 | Oct 28, 2022
In reply to @dkubacki "thank you for the info. did you get really fatigued? I have to drive 2 hours..." + (show)
@dkubacki

thank you for the info. did you get really fatigued? I have to drive 2 hours to the treatment so...

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Additional comment: During my 16 treatments, 1 machine was down for a week and we were scheduled very late, e.g., 10 pm. If that happens to u, find a motel nearby.

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frogjumper | @frogjumper | Nov 25, 2022

This is all so good to hear!!! I am 2.5 hours away from the center but plan on staying in a hotel nearby during the week and doing some sight seeing and other fun activities that don't take a lot of energy in case I am fatigued. But am I nuts I'd like to think I can eke out some fun from cancer treatment? I have no intention of having heart/lung/rib issues from treatment so traditional radiation or brachytherapy are off the table for me.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 25, 2022
In reply to @frogjumper "This is all so good to hear!!! I am 2.5 hours away from the center but..." + (show)
@frogjumper

This is all so good to hear!!! I am 2.5 hours away from the center but plan on staying in a hotel nearby during the week and doing some sight seeing and other fun activities that don't take a lot of energy in case I am fatigued. But am I nuts I'd like to think I can eke out some fun from cancer treatment? I have no intention of having heart/lung/rib issues from treatment so traditional radiation or brachytherapy are off the table for me.

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@frogjumper, with that kind of attitude, I think you have just the right amount of being nuts to eke out some fun. 🙂

Members like @dick61 @marsarmn @deechase @barbaraknabel and @mugs24cancer, who have had proton beam therapy for breast cancer can share their experiences and what you might expect for energy levels and fatigue. It sounds like you're preparing for all scenarios, which sounds wise.

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kellyc14 | @kellyc14 | Nov 26, 2022

Late to the conversation here, but for members in the future who have the opportunity to visit UTSW in Dallas and interview them as an option, they have a GammaPod machine, which targets the partial breast, not entire. You have to meet certain criteria after a lumpectomy (I don’t know them all, but margins, proportions of tissue removed to remaining tissue are a couple- determined in scan). The big upside is only 5 treatments - long days (you are there for about 4 hours and are hooked to a very awkward contraption, have to be able to lay face down on the table for each session, etc.
Fatigue was still a big factor for me at the end and after. If anyone is considering and in the Dallas area, I would recommend an opinion from them.
(For context, I was DCIS stage 0, and required 2 lumpectomies to remove tissue to clear the margins, ER+)

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1 reply
katjje | @katjje | Nov 26, 2022

Hi @sheilazejdlik Sheila. Thank you for sharing your experience. I am in a similar boat but Penn Philly wants me to do traditional radiation and I think due to insurance reasons. Are there any tips you can share on how to handle insurance coverage please? I start traditional radiation on Wednesday. They did the breather tests, CT scan etc but didn’t share the results with me. I was just scheduled for radiation for 3 weeks. I have asthma and am worried about my heart and lungs but proton the MD said has a chance to cause rib fractures so I thought there’d be risks either way. Thank you, Julie

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katjje | @katjje | Nov 26, 2022
In reply to @kellyc14 "Late to the conversation here, but for members in the future who have the opportunity to..." + (show)
@kellyc14

Late to the conversation here, but for members in the future who have the opportunity to visit UTSW in Dallas and interview them as an option, they have a GammaPod machine, which targets the partial breast, not entire. You have to meet certain criteria after a lumpectomy (I don’t know them all, but margins, proportions of tissue removed to remaining tissue are a couple- determined in scan). The big upside is only 5 treatments - long days (you are there for about 4 hours and are hooked to a very awkward contraption, have to be able to lay face down on the table for each session, etc.
Fatigue was still a big factor for me at the end and after. If anyone is considering and in the Dallas area, I would recommend an opinion from them.
(For context, I was DCIS stage 0, and required 2 lumpectomies to remove tissue to clear the margins, ER+)

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Hi @kellyc14 Kelly, thank you very much for sharing. I am similar. DCIS Stage 0. 2 lumpectomies bcos they didn’t clear margins first time! Did insurance cover the treatments for you? I have really good insurance with Aetna but they still don’t cover proton unless the heart or lungs are in the way. Any info you can share would be greatly appreciated. I start Wednesday with traditional radiation and almost want to hold them to check with the Texas Place you shared.

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1 reply
kellyc14 | @kellyc14 | Nov 26, 2022
In reply to @katjje "Hi @kellyc14 Kelly, thank you very much for sharing. I am similar. DCIS Stage 0. 2..." + (show)
@katjje

Hi @kellyc14 Kelly, thank you very much for sharing. I am similar. DCIS Stage 0. 2 lumpectomies bcos they didn’t clear margins first time! Did insurance cover the treatments for you? I have really good insurance with Aetna but they still don’t cover proton unless the heart or lungs are in the way. Any info you can share would be greatly appreciated. I start Wednesday with traditional radiation and almost want to hold them to check with the Texas Place you shared.

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@katjje yes- everything was covered by my insurance.
Preauth took less than 1 day- UTSW did everything for me.
https://m.facebook.com/story.php?story_fbid=597867678301455&id=327809120678365

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