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Topic: Proton Therapy

Forum: Radiation Therapy - Before, During, and After —

What to expect from treatment and ways to cope with side effects.

Posted on: Aug 12, 2021 02:21PM

macdebbie wrote:

Has anyone had this vs traditional external beam radiation therapy?

I've read that it is less damaging to the body, and would like to explore.

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Aug 12, 2021 06:50PM Boston12 wrote:

I had proton radiation because my cancer was in the left breast and i have a history of heart disease in the family. With proton radiation, the beam stops at the tumor (or node if that's the target). With photon radiation, it goes through the body. In the past, many women experienced lung and heart damage from radiation, but new techniques have been developed to avoid affecting the heart and lungs.

That being said, I was very pleased to be accepted into the RadComp clinical trial and receive proton radiation as it was one less thing to worry about. I had a very good experience and no side effects other than typical skin redness that comes with radiation. I had no fatigue at all.

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Aug 23, 2021 02:20AM mamacure wrote:

I’m looking into it due to left side also. I was told I will be a good candidate for it. I live 45 min from a proton center. Insurance will be an issue. They said Medicare covers it but I’m too young for Medicare.

DX 3/23/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemotherapy April 2021 Taxol, Carbo, Ketruda | Chemo May 2021 Abraxane, Carbo, Keytruda ,AC | Integrative Oncology & Accupuncture
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Aug 23, 2021 08:33AM macdebbie wrote:

Mamacure, why do you think insurance will be an issue?

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Aug 23, 2021 08:37AM macdebbie wrote:

Boston12 - Do you live in Boston, ha ha? I used to live in Newburyport and wish I was still there as I would have just headed to Dana Farber. How did you find out about the Radcomp Clinical Trial?

I asked my radiation therapist about Proton Therapy and she said it was only being used in brain cancers, so not sure how accurate the info I got was.

I'd at least like to explore it. I live in SC now, but it it's a much more advanced technique with fewer side effects I'd consider flying how and staying the 6 weeks with relatives to get the best treatment possible.

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Aug 23, 2021 10:24AM ThreeTree wrote:

There's a lot on these boards about proton therapy if you use the search feature and type in "proton". I had proton radiation for left side and have no regrets. I am just a short drive from a center. My work insurance would not cover it, so I signed up for Medicare and they did cover it. Later, after I was done, I got a notice from the work insurance that they had re-considered after the hospital appealed on my behalf. The insurance companies sorted it out and I don't know who really wound up paying, but I still had a co-pay (Medicare) of several thousand dollars, which I was fortunately able to manage. It was probably my largest out of pocket cancer treatment expense.

They use this for all sorts of things other than bran cancer, so what you heard, Macdebbie, is wrong. Search around on the boards here, as quite a few of us have posted about our experiences. Again, I would suggest using the search word "proton" in the search feature. Best of luck to you.

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Aug 23, 2021 12:26PM farmgirl888 wrote:

I had IORT (Interoperative Radiation Therapy) since I was early stage. I had it done @ UCSF.

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Aug 23, 2021 02:10PM metooat71 wrote:

at 70, I was diagnosed with stage 1 , grade 3 ( aggressive) 1 CM RIGHT BREAST CANCER.

sentinel + 2 nymph nodes removed , but none involved.

I opted for lumpectomy and Proton radiation for peace of mind.

no burning, no rash, no fatigue, no side effect of any kind, 10 sessions only, and everyone was so nice !.

from what I understand,, every proton center has the same attitudetowards patients. They do give free consultations and explain the difference between regular (Photon) radiation and Proton radiation. you can find it on the internet..


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Aug 23, 2021 06:38PM Boston12 wrote:

I live in a suburb of Boston, about 20 minutes from MGH where the proton center is in this area so it was quite convenient for me.

Proton radiation is used for a lot of different cancers - head and neck, mouth, prostate, breast (left in particular). It's used with children to reduce the damage to healthy tissue to avoid future problems. There were a lot of kids in the waiting room while I was there.

No one told me about the RadComp trial - my sister had died suddenly of a heart attack just five weeks before my diagnosis, so I was really anxious about any treatments that affected my heart. That led me to do some research and I found it. It's a Phase III trial so you can be randomized to either protons or photons. Given my family situation, I was tremendously relieved to be in the proton arm. I get a sense that there's a bit of professional rangling going on about proton radiation among radiologists, but that wasn't my problem.

Newburyport is beautiful! I love the Northshore.

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Aug 23, 2021 07:26PM macdebbie wrote:

Thank you for the info. I am so very sorry to hear about your sister. I'm sure that was an enormous stress on top of what you were already dealing with. I wish I was back in Boston for my therapy. I will just have to make due unless I want to fly back for radiation and live with my SIL for 5 weeks (she would be fine with that). I'm just not keen on traveling during this COVID outbreak, especially since SC is in such a mess with cases right now. Do you have to be part of the trial to get proton therapy or can you just go to a proton center and get it? I do agree that there seems to be some discord about the treatment. I'm glad you were able to get it and hope that you are doing well. And yes, Newburyport is beautiful. I miss it lots. Just not in the winter.

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Aug 23, 2021 08:32PM mamacure wrote:

hi MacDebbie,

Proton is expensive & considered “experimental” by most private insurance so usually not covered for BC. I’m going to try to appeal.

DX 3/23/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemotherapy April 2021 Taxol, Carbo, Ketruda | Chemo May 2021 Abraxane, Carbo, Keytruda ,AC | Integrative Oncology & Accupuncture
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Aug 23, 2021 08:54PM ThreeTree wrote:

I declined a trial that would have computer flipped me into either the photon or proton groups, because I wanted proton for sure, but that is one way to get it paid for. I heard there was some talk that Medicare might drop their coverage for it, with the reason that "nobody else covers it, so why should we" argument. I don't know where that's gone, if anywhere at this point. As far as I know, Medicare still covers. The hospital seemed to do automatic appeals with your consent, but the problem with the appeals is of course, that you don't know what they will decide, but the bigger problem is that the appeals take so much time, that waiting for the response significantly delays the time you have to wait for your treatment and that is not a good thing.

My center had a thing where if you could not get it covered by insurance, they would let you do it for a flat $10,000. The full regular cost I understand is around $65,000. I think I still wound up with something like a $7,000 co-pay, even after it was covered. Check with your center, because they had financial people who will talk to you about all of the options, etc.

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Aug 29, 2021 02:21PM Ammie wrote:

Following this, as I would like to explore this option as well (my cancer was in my left side too, and I’m very concerned about risk to the heart and lungs).

The closest proton therapy center to me would be Scripps MD Anderson in San Diego.

Dx 2/18/2021, DCIS/IDC, Left, 1cm, Stage IIB, Grade 3, 4/22 nodes, ER+/PR+, HER2- (FISH) Surgery 3/19/2021 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 5/3/2021 AC + T (Taxol)

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