Proton vs Photon Radiation for Breast Caner Treatment

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DD17
DD17 Member Posts: 13
edited April 2019 in Just Diagnosed

Hello Fellow Warriors,

Last year around this time, I made the decision to have proton radiation therapy for my breast cancer treatment. I came to this awesome site asking if anyone had any knowledge about this treatment. A few ladies responded.

As a result, I created a website (see below- Proton Radiation Buddy) to help breast cancer patients learn more about this treatment for their breast cancer-especially left sided breast cancer. I had an awful time with United Healtchare but they finally approved my treatment, unlike one of the patients I interviewed. I'm not prescribing this treatment as I'm not a doctor. I'm simply sharing my story as I don't want anyone to go through what I went through - delayed cancer treatments- due to the insurance issue. Plus there's lots of info there to help patients learn the radiation journey.

I ended proton treatment June 14, 2018 and doing really well! I had a mastectomy and reconstruction surgery on the left side on the same day. I'm grateful for so much in life and here to help anyone that might need me.


Best,

Denise

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  • DD17
    DD17 Member Posts: 13
    edited March 2019

    I also realize my link isn't inserted. For some reason on this site, it shows us how to link, I used that process, but it says I can't post the link. My story is also on Maryland Proton Radiation Center website where I had treatment under Denise Durgin.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    Thank you for posting. I just finished proton rads last week and am healing up. I have a thread on the Radiation forum and would love you to post your link there too.

    sometimes there needs to be X number of posts before you can post things? See if a moderator can help you...


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  • DD17
    DD17 Member Posts: 13
    edited March 2019

    Hi Santabarbarian,

    Great glad you're done and healing. :) Thanks for reaching out. I will go find the rads section and post there. And thank you. I think I will reach out to a moderator. I'm just trying to help people knowing how frustrating it was for me to find people with this treatment.

    Stay in touch and hope you continue to heal well. :)

    Best,

    DD

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  • ed111
    ed111 Member Posts: 73
    edited March 2019

    Thank you for this topic. From what I read, insurances refuse to cover proton therapy as "experimental" (though it is not). Could you share your experience with insurance companies, any obstacles for you?

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    The Center I went to, Procure in New Jersey, pre-vetted me (I have Obamacare in CA) and they also worked w my copay amount to bring it down. They had me sign something that allowed them to fight it out if anything was denied. I had left-sided TNBC. I have only just completed treatment... am not certain if they are fighting on anything or not, as the paperwork has not come to me yet. They limited my responsibility to my max out of pocket under my plan, so it was a known quantity ($7000). Normally would have been higher. They said I do not have to worry about the insurance portion.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    For people w insurance problems.... there are a couple of places that are/were doing observational clinical trials on protons... another possibility for people wanting it whose insurance says no.

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  • DD17
    DD17 Member Posts: 13
    edited March 2019

    Hi ed11,

    You are right it is not experimental. My 28 days of treatment were approved after a THIRD try by my Radiation Oncologist. Here is what I learned:

    • United Healthcare "peer to peer" process isn't truly "peer to peer." My Doctor - a Radiation Oncologist needed to speak to a Radiation Oncologist at United Healthcare. He did not speak to a Radiation Oncologist on the first two tries. He insisted on the THIRD try. He also wrote a 9 page case study to support my case. Then they approved my case.
    • This treatment was cost neutral but they still declined it the first two times-makes no sense it was costing the insurance company the same amount of money.
    • My Doctor and the Insurance Manager at the Maryland Proton Radiation Center are the reason I got approved. They were passionate and wouldn't stop until approved.
    • I also elected to go into a breast cancer trial. My doctor said on the first try alone, this should have been grounds for approval, but it wasn't.
    • I also have a heart issue and again, this should have been approved to protect my heart, but it wasn't until the third try.
    • Medicare/Medicaid I think pays no issues. Another person I know was approved very easily for a brain tumor from Blue Cross and Blue Shield.
    • I'm happy to help you anyway I can. I created a website to educate people on this-specifically the process for insurance approval as my treatments were delayed due to insurance issues-this is not good. My site is Proton Radiation Buddy You can contact me through the website. I'm also featured on the Maryland Proton Radiation Center patient page.
    Here for you.

    Best,

    Denise Durgin

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  • ed111
    ed111 Member Posts: 73
    edited March 2019

    Thank you so much, Denise, and everyone. it's so helpful! I will try to get to Mass general for radiation then, they, I believe the only hospital in MA that have proton therapy. You helped enormously.

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  • DD17
    DD17 Member Posts: 13
    edited March 2019

    Ed11,

    Great news, I'm so happy we could help you! My friend Kris Farrington on my website protonradiationbuddy.com was treated at MGH. She had an amazing experience there. If you want to talk to either Kris or me, we are both ready to help you anyway we can.

    Wishing you strength, healing and positive thoughts as you go through this journey. Here for you.

    Best,

    Denise Durgin

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  • RatherBeSailing
    RatherBeSailing Member Posts: 130
    edited April 2019

    DD17 -

    I admire your enthusiasm and determination to help others.

    But there is no research - zero - to date showing that proton is better than photon for breast cancer. Trials on prostate cancer - which should benefit from proton therapy and its reported ability to spare normal tissue - are not conclusive, with one study showing GI symptoms to be basically equal years out.

    The RADCOMP study on breast cancer may well show a benefit, but results are likely years out. And the proton industry talks about sparing the heart, but modern 3D photon therapy with breath hold can usually limit heart dose to under 3 Gys anyway, even with left-sided disease

    The fact is that many proton centers were built by for-profit companies at costs exceeding $100 million each, but are not attracting the patient base they anticipated. So they are scrambling to bring in patients, including tv ads that, in my opinion, play to patient fears. Baltimore, where you had your treatment, was in danger of going belly up and had to restructure.

    Please understand, I’m not saying proton therapy is bad. But I do think women should not be swayed into spending thousands of their own dollars or delaying treatment in search of a holy grail that may, in the end, just be copper.

    Everyone, please talk to your RO. Do ask about proton- and also what they can do to lessen effects if you end up with photon. Check into RADCOMP and see if it might be right for you (although my understanding is that women often still pay out of pocket.). Get a second opinion. Just please don’t be swayed by hype.

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  • DD17
    DD17 Member Posts: 13
    edited April 2019

    Hi I'd Rather Be Sailing,

    Thank you for understanding how much I'm trying to help empower people to get all of the information they need for their treatment. I think we are both trying to help people so we share that common goal. It's important for each patient to talk to their doctor and sometimes also seek additional opinions if they wish. In my case, I was seen by a Radiation Oncologist from the same practice as the Doctor that prescribed photon therapy-these Radiation Oncologist's were both wonderful;one explaining the breath hold/gating with photon radiation treatment and the other Doctor explaining why that's not needed in proton therapy. I felt good that I had two different opinions from the same medical facility from two different doctors but ultimately went with the opinion of the Doctor for proton therapy. I also talked to my own oncologist about it as well as my breast surgeon.

    It's great to keep the conversation about proton therapy alive as there is certainly a lot out there to look at. I also agree that more studies are needed for breast cancer which is why I'm enrolled in two studies so I can do my part to help others. I know there are other studies ongoing as well. for breast cancer; one of my friends was in the study from Mass General Hospital's Proton Therapy Center. Here is one of the studies published just last week-titled-although not for breast cancer "Proton Therapy is Noninvasive Treatment for High Risk Cancers- In Use Today with "Excellent" Success Rate."

    The Maryland Proton Treatment Center also raised $277M in a bond deal last September, 2018. I believe that if insurance would approve the treatment, just like they did for my breast cancer, they would have more patients and wouldn't have faced this challenge. The Maryland Proton Treatment Center was amazing and I'm so grateful I made the decision I made and was treated there.

    I'm wishing you all the best and thank you for your thoughts.

    DD17

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited April 2019

    Rather beSailing, there are a few serious SEs that can happen with regular rads that are lessened with protons, such as brachial plexopathy... the way the photons pass through and exit can do damage to this area.

    I was sooooo happy with my experience at ProCure. I did have burns toward the end. The worst of it was about 5 days after the end of treatment. But from there, in about a week I had totally healed. No discomfort, no mobility issues.

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  • RatherBeSailing
    RatherBeSailing Member Posts: 130
    edited April 2019

    DD17 -

    Thanks for the update. I believe most would agree that proton can be a very good thing in pediatric cancers, where patients may suffer delayed radiation effects years down the road. The study you quote, though, doesn't compare proton to photon as far as effectiveness or side effects.

    And as far as the goodnewsnetwork.org article, it is HIGHLY misleading, saying the survival rate for neuroblastoma can be as low as 40%. Yet the cancer.net article that statistic links to says the overall survival rate is 80% - which is neither higher nor lower than that achieved in the proton group.

    I'm sorry but, in my opinion, another example of hype.

    I don't blame the insurance companies for not paying for an unproven - and very expensive - technology until the results are in.

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