Jan 2, 2019 10:54PM santabarbarian wrote:
bump, very curious about proton rads!
What to expect from treatment and ways to cope with side effects.
Posted on: Jan 2, 2019 01:10PM
I am considering getting Proton Radiation due to a left sided cancer and TNBC.
Has anyone had Proton Radiation? If so, how did it go for you, and where were you treated?
Posts 1 - 30 (61 total)
Jan 2, 2019 10:54PM santabarbarian wrote:
bump, very curious about proton rads!
Jan 2, 2019 11:37PM JosieO wrote:
Very good question, and I am curious about the opportunities for use in breast cancer, although I had my treatment (IMRT - intensity modulated radiation therapy) earlier this year. Because I know the equipment is not that readily available, I was not sure how that would influence breast cancer treatment.
Maybe you can contact those facilities, ask about options for breast cancer treatment? Can you also get some guidance from anyone in your own treatment team?
Keep it bumping, and hope someone responds.
Wishing you the best in your own treatment
Jan 3, 2019 12:04AM santabarbarian wrote:
My surgeon has had patients get proton rads at Loma Linda and San Diego. I am interested to hear from someone who has done it and how the side effects were, etc.
Jan 3, 2019 12:42AM JosieO wrote:
Well, that is both interesting and encouraging.
Just thinking out loud, maybe:
1) call the directors of both of those programs - see if they have done any write ups in their internal publications, or even if they could refer you to some patients who have experienced
2) would your surgeon be able to reach out to his patients who he has referred, ask if they would share with you?
I recognize that HIPPA privacy laws make this more challenging, but hope you can find a source.
It was a good idea to post here-let’s hope that someone replies
Jan 3, 2019 11:38AM santabarbarian wrote:
wow surprising nobody has had this!
Jan 3, 2019 12:37PM Boston12 wrote:
I had proton therapy for left sided IDC as part of a clinical trial (RADCOMP - phase III). It's more expensive than the photon radiation so it's harder to get the insurance companies to cover it so I was fortunate to be accepted into the trial.
I had a very good experience with it and was pleased to be accepted into the trial. I had one nasty looking positive node so the radiation had to cover the axilla and supraclavical areas. The clinical trial includes the internal mammary nodes which is controversial, however the radiation oncologist was clear that it was a pragmatic trial, meaning that if your anatomy didn't allow the radiation to be delivered safely beyond a certain point, then that took precedence over the trial recommendations
The treatment itself was very easy once you got into the treatment room. I experienced no fatigue at all and had 33 treatment sessions. I did get a typical burn, but it was almost all gone a week after treatment ended.
I'm fortunate to live close to Boston and MGH which has been doing proton radiation since 1993 but people travel from all over to receive proton therapy. I met people from Colorado, New Jersey, Puerto Rico, Rhode Island, NH. Most of these people stayed in local hotels set aside for MGH patients.
One thing that is a little hard emotionally: insurance companies are far more likely to cover proton therapy for children so you see a lot of kids with cancer. It definitely put things in perspective for the older people. That being said, we all got to know each other in the waiting room and I'm now FB friends with three parents and go out to dinner with two local ladies who've become friends.
Jan 3, 2019 01:03PM - edited Jan 3, 2019 01:04PM by santabarbarian
Boston, thank you for this information! I am very glad it went so well for you. Indeed they are still apparently doing clinical trials at several places to gather data to convince more insurance coverage. I am looking into it now. I just had surgery last week so this is my time to figure out rads!
Jan 4, 2019 11:22AM santabarbarian wrote:
bump... anyone else??
Jan 6, 2019 02:27PM santabarbarian wrote:
Jan 12, 2019 09:52PM santabarbarian wrote:
how can it be so few have done this???
Jan 13, 2019 12:20AM JosieO wrote:
Kudos to you for keeping this topic active.
Reading the responses so far, i’m starting to think that there are issues keeping more breast cancer patients from accessing this technology:
1) insurance - when technology is new, insurance will often not cover it, or cover it so thinly that doctors have to refer patients to the more conventional therapies. I know my insurance would have not covered it.
2) geographic availability - although I live in a large, established state, there is only one proton therapy facility here. My sense is that patients who want it may be traveling out of state to obtain it.
3) medical priority - what types of patients are accepted may be a factor. I can appreciate that children, patients with challenging tumors, and other, more unusual situations may be given a higher priority
I personally think if you can get access, you should go for it.
I appreciate the learning your post has generated.
Jan 18, 2019 07:56PM santabarbarian wrote:
I have discovered that having a high risk left sided cancer makes me eligible for proton rads. Insurance will cover it. I am on Obamacare in CA and have a gold plan.
I am investigating a few places... Procure in NJ is who vetted my insurance. They are out of network but would work with me and my copays would not exceed my out of pocket max for the year.
Jan 25, 2019 03:53PM radishhub wrote:
-I am trying to figure out if I should do proton therapy. It is offered at my treatment place, but I just received word that insurance denied coverage. My radiation oncologist is helping with the appeal, but I hope it doesn't delay treatment. I don't really know how important it is to get proton over photon radiotherapy given that mine is on the right side.
-If mine were on the left side, like santabarbarian's, then I would push for it for sure. Loma Linda had the first proton machine, and googling will get you to the centers in the U.S. that do have them.
-I am surprised to see so few posts on proton radiation on this site.
Jan 25, 2019 04:53PM radishhub wrote:
I am trying to figure out if I should do proton therapy. It is offered at my treatment place, but I just received word that insurance denied coverage. My radiation oncoogist is helping with the appeal, but I hope it doesn't delay treatment. I don't really know how important it is to get proton over photon radiotherapy given that mine is on the right side. If mine were on the left side, like santabarbarian's, then I would push for it for sure. Loma Linda had the first proton machine, and googling will get you to the centers in the U.S. that do have them.
Jan 25, 2019 05:12PM santabarbarian wrote:
I have had a great experience so far with Procure in NJ. Very professional, efficient, friendly and gave me a great feeling of being in good hands!
Feb 12, 2019 10:00AM santabarbarian wrote:
My first radiation session was yesterday. I am very very happy with Procure so far. They are a well-oiled machine of efficiency. No waiting. Impeccable, clean-- and very friendly people. Nothing like walking in for your first day and the guy at the front desk greets you by name.... Yes, he had a photo ID for me... but it still felt good.
On my intake appointment a few weeks back, they made a foam mold for me to lie in so I am in the same position each time. They also did imaging to create forms for the beam to shape the areas that get radiated. When I got there, they took me right back, gave me a robe to keep and bring with me, showed me the forms (three of them) that would guide the beam, and asked me what music I wanted. Then they laid me down in the foam mold, positioned the beam, and did 4 or 5 zaps (very brief) with new setups for each one. It was over in about 20 mins. Then I saw my nurse and the RO. I meet with the RO once per week for the duration, which is nice.
Feel free to ask me questions if proton rads are of interest to you!
Feb 13, 2019 08:32PM theresa45 wrote:
In October/November 2016, I was treated with proton radiation therapy for left-sided breast cancer including cervical, axillary and a couple of inernal mammary lymph nodes. I live in Northern California and was treated in San Diego at Scripps Proton Center. The center has since changed names/ownership. None of my treated lymph nodes have shown activity on PET/CT since proton therapy treatment. After some initial battling with insurance, my insurance covered my treatment. Toward the end of my 6 week treatment, I had some skin burns. I also experienced esophagitis (difficulty swallowing) for a week or so. Finally I developed some very minimal lymphedema in my left arm about 4 months after treatment. I feel fortunate to have had access to proton radiation therapy and consider the treatment a success. If I remember right, we looked at the Procure Center associated with MSK at the time, but since I was newly diagnosed with Stage IV, I was not eligible for proton therapy with them.
I wish you much success in your treatment!
Feb 13, 2019 10:03PM santabarbarian wrote:
Thank you Theresa!
I am glad you were happy with the proton therapy you received in San Diego. I considered going there too, but I do not know a soul in San Diego, whereas in NYC I know a lot of people including my grown daughter. Seemed way less boring to go somewhere where I could at least hang out with people I know in the evening.
I appreciate you posting!
Feb 27, 2019 05:00PM - edited Feb 27, 2019 05:04PM by PiperKay
I am in Atlanta where we have a new proton therapy center affiliated with the Emory University Winship Cancer Institute. I'm having the third of my four TC treatments tomorrow, 2/28, and the last one will be on March 21. So in the meantime, I'm investigating whether I am a good candidate for proton therapy and if so, whether my insurance would cover it. I too have heard that left side BC is prioritized given the proximity to the heart, so I may have an insurance battle since my BC is right side. In any case, I have a consultation with a radiation oncologist with the center next week on March 7, and I'll let y'all know what I find out!
Feb 27, 2019 08:38PM santabarbarian wrote:
Anne I will be curious to hear what you discover!
I am surprised that more people are not aware of Protons.
I am nearly half way through Proton rads at ProCure. My main SE is pink, slightly itchy skin. Like a mild sunburn. My energy is normal and no pain. I have continued to be very happy with the center. The other day they had a machine go down due to a power outage and they called to tell me my appointment would be later. When I got there, I saw that pizzas had been delivered for the patients who had waited. Classy!
Mar 13, 2019 04:54PM santabarbarian wrote:
I am now 21/28. My boob is very red. Like Andy Warhol red. And it itches. Not painful though, so I will take it. I am still very happy with ProCure. I love the techs. We have a lot of laughs, and they are so kind.
Mar 15, 2019 01:04PM PiperKay wrote:
Santabarbarian, I cancelled my appointment after the the doctor I was originally scheduled with moved to another office location. I will talk about it when I have my first appointment with the radiation oncologist my MO is referring me to. She is the Director of Radiation Oncology at the Winship Cancer institute location where I get most of my care which is just a few blocks from the proton therapy center. Not sure yet when I'll be meeting with her, but my last chemo treatment is next Thursday, so it will be fairly soon, I'm sure. I'll keep you posted! PS, Love that pizza story!
On a related note, I talked recently with my dad - a retired OB/GYN - about the proton therapy idea and that I'd been hearing that insurance companies may be likely to approve coverage when the BC is on the left side than when it's on the right. He made an excellent point that the heart really isn't located decidedly in the left side of the chest. It's more like in the center for most people. I will be sure to bring that up if I decide to pursue the PT route and get any pushback on the left/right issue from the insurance company.
Mar 16, 2019 08:08AM santabarbarian wrote:
Piper thats a good point by your Dad!
I think it's clear from this thread that Protons are not accessed by a great many BC patients... I have a feeling my center worked with me financially in part because they were not overly full. They have been wonderful. I am pleased I picked them. 4 more to go and I will be done. I have sensitive skin and it has burned to the level of a fairly bad sunburn, but it hasn't hurt. Just itches, and I know I'm about 2 -3 weeks away from being back to normal.
Mar 19, 2019 03:59PM santabarbarian wrote:
In the interests of full disclosure, I am now experiencing some 'zinger' nerve pain intermittently, due to the inflammation in my tissue, and my skin is the red of a bad sunburn, and a little peely. But I am now 26/28, so I only have two more to go. The first 4 weeks were frankly a breeze, and even this is still a level of discomfort ibuprofen can handle... I am actually grateful that my mind is on something as superficial as a sunburn, and *not* worried about my heart, my lungs and my brachial plexus!
I am really glad I did Proton Rads and I encourage anyone who is interested to look into it!
Mar 19, 2019 09:24PM Boston12 wrote:
I had 33 proton treatments and being very fair skinned, everyone expected me to burn and I did. However, when my MO saw it, she said it was what she would have expected with photons. The big thing for me was not experiencing physical fatigue at all. After seven months of treatment, I was emotionally worn down, so not having the physical fatigue was a huge benefit.
I think generally doctors don't tell patients about the possibility of protons. I did the research on the clinical trial (RADCOMP) on my own because I was extremely concerned about heart damage, as my sister had died of a sudden heart attack just a few months before. The hardest part was getting the insurance approval which really doesn't make sense if the radiation has any possibility of harming the heart - they end up paying for cardio care in that case.
I was told the burn would last for 2-3 weeks after the treatments ended, but it was gone in about a week.
Santabarberian - I'm glad that you were approved. I found that the hardest part of the whole BC treatment saga was about two weeks before the end, when I could see the light at the end of the tunnel, but still has 14/15 treatments left. You're just about done and I think you'll be glad you had protons with left sided BC.
I had my first CAT scan a few weeks ago and the nodes look clear. That was my other fear - I'm early stage but high risk so I wanted to zap every node in sight.
Let us know when you're done and how you recover.
Mar 19, 2019 10:41PM VLH wrote:
As to why more people haven't chosen proton therapy, I called the facility fairly close to me & was told they only offered the 33 treatment option for breast cancer. I'd already dealt with five surgical procedures, two infections (one requiring a PICC line & IV antibiotics) and five months of harsh chemotherapy so found an RO who offered the 16 treatment plan paired with prone positioning to try to protect the heart. For future patients, it will be interesting see what proton therapy produces in terms of efficacy and cardiac benefits.
Mar 20, 2019 10:21PM Boston12 wrote:
That's an odd way of determining treatment - that everyone gets the same thing. The women in my radiation group all were receiving a different number (which of course caused anxiety - why was I getting 33?). In this day and age, the one size fits all approach seems a bit dated.
Mar 21, 2019 07:35AM santabarbarian wrote:
I was told the cumulative dose is the same, so the daily increment is smaller if they do more sessions. I have had 28, my last one is today!
Mar 24, 2019 03:35AM santabarbarian wrote:
Home from rads with a sore sun-burney peely slightly swollen breast. Glad to be home!
It was doable though. Nothing Advil couldn't handle... it didn't get really irritating till the last 6-7 zaps and by then I could see the finish line. I had 28 treatments total.
I loved my center. They were so kind and personal. There is a HUGE staff. From front desk to top docs, extremely nice people. Everyone goes above and beyond. The techs particularly were lovely and charming. They work with very tough cases from MSK of all kinds of un-resectable tumors or mets. All ages... kids were part of the mix there too.
You see a nurse and your RO once a week. In my case I mostly had mid day appointments, and the same small team of techs. 8-9 people of whom I got the same 4 most of the time.
The facility is gorgeous. There is a lunch every weds for graduates. It is impeccably clean and runs like a clock, except for a wind event and a snowstorm which caused some glitches. But as a rule, you never wait.
I feel great about Procure and my experience there.