Proton Radiation: share your experiences
Comments
-
Hi again Santabarbarian,
I found your post! I had proton radiation treatment and it ended June 14, 2018. I'm doing really well! I created a website called protonradiationbuddy.com to help patients learn about the treatment. I've interviewed patients there and shared their stories. I had an incredible experience at the Maryland Proton Radiation Center where they shared my patient story. They were simply amazing and defined excellence in healthcare.
My takeaways from treatments:
- Three appeals to United Healthcare and it finally got approved-took an actual Rad Oncologist to review my case and my doctor's nine page case study-but they paid for it!
- It was painless for the most part until I burned at the end, really bad, and it got worse and then totally better!
- I used Organic coconut oil from Whole Foods at night for my burns. I would ask your Doctor, mine said it was fine. I didn't like what they gave me.
- I got Lymphedema after, it cleared after 5 months of PT.
- I have ALL of my strength back and 90% rang of motion. I worked out every day and just kept going and working during radiation.
- Since treatment ended, I have really bad fatigue. I think it's Tamoxifen. I started that in July. I wasn't this tired when I was receiving proton therapy-crazy, but I just keep going with a positive attitude.
I'm here and can be reached through my website if anyone needs a shoulder to lean on or a buddy.Best,
Denise Durgin
0 -
I have had post rads-fatigue too.
I am attributing it to burn-healing (not on Tamoxifen!). My story is like yours exactly, mostly fine then fairly seriously burned on the last 7 days but tolerable even now, I am 5 days out. I think I need another 5 days at least. I had hoped to be "all done" but I think I need to allow myself time to rest and heal.
I think it's a great option, especially so for L side, but also to avoid injury to the brachial plexus, lung, etc.
0 -
I have a recurrence of BC , left side. According to all the ads posted by proton therapy centers I seem to be the perfect candidate. Yet my radiation oncologist( who also does pt in addition to r.t.)says no. Because I've had r.t.before and my cancer is in the same area. I called Loma Linda, they turned me down too. I really think pt would be better for me but wonder where to try next
0 -
Is you team suggesting Mx?
0 -
I’m starting a Proton Therapy soon. I’ll check in with progress as it unfolds. I’m ready to get started so I can be done!
Jenny
0 -
I will be starting 5 weeks of proton radiation in May of this year for recurrence in one lymph node. Field will include supraclavicle nodes as well. I am fortunate to live near a hospital that offers it and that my insurance will cover it. I am told it is more precise and less damaging to surrounding tissues than traditional radiation
0 -
Toni,
Thank you for posting-- and I hope you have a great experience with protons. Please keep us posted!
I am one month post rads now, and I have felt very normal for the last two weeks. Back to my old self. No lingering issues at all. Very happy!
0 -
just saw this. had RT 15 + years ago for right-sided bc, hated it, burned badly, very fair skinned. now diagnosed with idc on left, really dont want rt again, am seriously considering bmx with reconstruction, to avoid the rt. will look into pt now. thanks for all the info. please continue to post your experiences.
0 -
To be honest, ts542001, I burned from protons. I had 28 sessions and about 20 were fairly comfy.... but that last week or so was
. But it healed VERY rapidly. The nice part was, when you are lying there being radiated there are no worries about other organs getting exposed.0 -
santabarbarian, what did you decide? I think I am declining re radiating.
0 -
I did it, because with TNBC and not wanting a mastectomy it was the path I had to take per survival stats. That's why I chose protons, to fee like it was doing less damage to me.
0 -
I am now about 3 months out from radiation and feel great. I have no lingering side effects except for mild tightness where my sentinel nodes were removed, and a slight sensitivity (in my mind?) where my lumpectomy was. I feel great. I am taking Pentoxifylline and Vitamin E which is to prevent fibrosis. I see my breast surgeon on Thursday for my first checkup since my post surgery check up. Hard to believe I am 6 months out from surgery. Still so glad I did protons, exp when I read about the damage left by rads in come cases. Thought I'd bump this thread for others considering options.
0 -
The TX Center for Proton Therapy is about 7 miles from my house - I never would have considered it except my 2nd BS is a former colleague and friend of the medical director. (I will pause here to say I had a re-excision 2 weeks ago by a 2nd BS since I had positive margins that I knew nothing about! Second cancer center caught the error so here I am.)
So BS #2 calls up the medical director at proton center to get the ball rolling. I have an appointment this Friday but the 1st hour is being spent with Finance so I started researching...I had no idea proton therapy was so much more $$$ and I doubt my insurance will cover it. I don't want to delay now since my first surgery was in March and here I am just getting started with radiation - over 3 months later. Guess I'll wait to see what I find out Friday but I will probably end up going with IMRT with a different RO, which my insurance will cover.
I've been reading like crazy the differences in the types of radiation, pros/cons, etc, but it will come down to what I can afford I'm afraid. I will report back what I find out on insurance for those who'd like to know. BTW, I have BCBS - the best PPO plan that my company offers - and have already met my out of pocket max for the year.
0 -
See what they say; my center worked with me.
0 -
Guess I'm the lucky one because DH's health Insurance is going to pay for my 33 Proton treatments and 5 boosts.
0 -
Good to hear, nanette! Did anything specific about your case bump you into 'qualified' for coverage?
0 -
I honestly don't know it could be because it escaped my breast and putting me the metastatic category...by the broad use of the world....same as for my breast sarcoma surgically drained fell under bilateral debridement of surgical area.... I think it's all in how the Doctors word things to the insurance companies
0 -
I'm still trying to decide between proton and photon for left sided BC. Leaning a lot towards protons, but am interested in hearing anything anyone else has to say about side effects and overall experience with protons so would love if any of you that were starting protons post any updates here. Thanks.
0 -
I am 100 % happy with it. I had 28 sessions and was seriously "over it" by the end, but it was all reasonably comfortable and the annoying part was short lived. My skin is sensitive and all in all it was very doable. Expect to be tired for about 2 weeks after finishing. I loved my center and the professionalism and healing attitude they had there. 100% comfortable, my breast is a little firmer than the non rads side but that was partly due to being reduced due to LX. It feels natural and though I am still "tanned" I am so happy with the look and the feel being very close to normal.
0 -
After a lot of research and due to my situation (it's been almost 4 months since my LX), I decided to go with regular rads (photon). I had an appt with the proton radiation oncologist and asked him if there was any difference in long term survival or recurrence between proton vs photon therapy. He said no. I asked him if there was any difference in side effects. He said no. According to their finance dept, my insurance (BCBS) pays for proton therapy about half the time (that's for all types of cancer). If it was denied, it would go to an appeals process and if that didn't work there was a third step.
He suggested a trial they were having and at first I said I'd like to do it. Half of patients would get proton and half would get regular rads. However, if you were chosen for the regular rads group, you don't get to pick your radiation oncologist. It would be a doctor who was participating in the trial and there were none near my home or work (I work full time). Plus they were in the process of hiring a research nurse so nothing would happen until he/she was on board.
After careful consideration, I decided on regular rads as I wanted to start NOW. I don't want to wait another month to find out IF my insurance would pay and then IF I was chosen for the proton trial group. It was highly unlikely that my insurance would have outright paid for proton therapy and it would be several weeks before I would know.
I called the radiation oncologist I saw in April (before I got the 2nd opinion and had to have a re-excision), had an appt last week and start radiation next Tuesday. I will have 4 1/2 weeks of radiation (he didn't say how many sessions - 22 or 23?). Ready to get this part of my journey underway!
For me, time was the deciding factor - unfortunately.
0 -
My insurance denied proton therapy, but my proton center worked with me and told me what my maximum out-of-pocket cost would be. I am still doing chemo, so I still have a few months to go before I start doing radiation.
Did anyone take medical leave from work due to geographically relocating to get proton therapy?
0 -
-
Great news!! Thank you for posting!!!
Now 5 most past Rads... and my only small SE is a place on my skin about 1 inch by 2 inches that got a little irritated (I know it was rads related because the edge of it was exactly at the same line where my rads stopped). I think it happened from being exposed to sun when I swam though i had sunblock on. Got kind of streaky/itchy/puffy. Not severe but took a few weeks to resolve. Other than that, nothing!
0 -
bumping this thread
If you have a left sided BC or a hard-to-treat recurrence met, can't hurt to talk to a Ptroton RO and see what may be possible!
0 -
Hello - I just wanted to say that I am currently finishing up with proton radiation and am glad that I chose it over "traditional" radiation. My tumor was on my left side, so I was concerned of course about the heart and lung damage that can occur with traditional radiation. I would recommend that anyone needing radiation look into both traditional and proton radiation before going ahead with either. Most people seem unaware of the proton option, and it actually is not an option for many, unfortunately, due to most insurance not covering it, the limited number of centers around the country, and doctors not mentioning it to their patients as an option.
I only discovered proton therapy on my own and was not told about it by any of my providers. I have run into others who say they also learned about it on their own, but others too, who say it was recommended to them because of a left sided issue. The health insurance I have through work will not cover the treatment, but the cancer center told me that Medicare would, so I signed up for Medicare, along with a supplemental plan that will pick up the deductible and out of pocket expenses. The financial people at my cancer center said they had never seen Medicare turn down a request for protons, but that most private insurances always do. They will try to get my private work insurance to pay first, but are almost certain the company will decline to pay, and then they will move to Medicare. They had also told me I would have an option to personally pay $10,000 out of pocket if no insurance would cover it. They consider that to be quite a discount, since the actual cost is something like $30,000+. I was also told that I could get the treatment covered by being in a study of traditional vs proton therapy, but that it is a computer coin flip that determines which group you are in. I did not want to risk being placed in the traditional radiation group, because I knew I wanted proton exclusively, so I declined to participate in the study. If I had not been Medicare eligible, I would have had no other option than traditional radiation, which most insurance covers. Proton is considered "experimental" so not covered by most plans. My understanding though, is that there is study data out there for about 5 or 10 year results and that it shows proton to be equal to or better than traditional radiation for many situations. What they apparently don't have yet, and what insurance companies seem to rely on to continue to call it "experimental" is more like 20 and 30 year data.
I happen to live in a place where there is a proton center and my other treatment has occurred at the same site where the center is. I often parked my car facing the proton center when I would go for scans, chemo, etc. I had actually assumed that all of the radiation at my center was done in that building, but was then told that I would be going to the same place for my radiation (traditional that was the only thing mentioned) that I went for chemo. I began to wonder then, just what the difference was and what went on at the proton center, so I started reading and asking around and that is when I learned that proton therapy is indeed a good and perhaps much better option for left sided breast cancer. I then asked my providers about it and they suggested that I speak with the proton therapy doctor in addition to the traditional radiation oncologist so that I could make an "informed" choice. No provider had ever suggested to me that it might be an option for my situation - only when I started asking questions and talking about what I had read, did they suggest I go for a consultation. When I mentioned this fact to the proton radiation oncologist she said it was just "standard of care" for the others not to mention it.
The side effects appear to be pretty much the same as with traditional radiation and one still has to go every day for several weeks. My treatment plan has been for 28 regular sessions and then 5 boosts. It does seem that I have not been "on the table" for as much positioning as I have read that those who go through traditional radiation experience. They seem to get me positioned in a bout 5 minutes - maybe 10 at most, and then it only takes about 3 minutes to get zapped. Driving there, changing clothes, changing again, and driving back home takes up way more time than any positioning and zapping. Also, they have been very good about keeping me covered through all of the positioning and only uncover me for the approximately 3 minutes of actual treatment.
I will never know just how well this worked of course until years from now (hopefully, and knock on wood, I have "years from now"). So many of the negative side effects of traditional radiation do not show up for a long time, so I can only assume at this point that I have done the better thing for my situation, based on what's "out there" and currently known.
I have 3 boosts left and have done fairly well. I definitely have a "bad sunburn" effect that is getting worse, and over the last couple of weeks have developed quite a bit of fatigue. None of this is out of the ordinary, however, from what I have been told. I was actually going to sign up for this forum last night, but was just too tired to do it. Even today, I am almost too tired to do this and found the whole sign up and "settings" stuff too overwhelming at least for now, so I do not see myself becoming a regular participant/poster at this point. My body and brain are just simply exhausted from all of this treatment over the last year.
Just wanted to add to Santabarbarian's suggestion and recommendation that others look into this form of treatment. If you can find a way to pay for it, and get to a center, it is worth checking out for sure for any number of breast cancer (and other cancer) situations.
0 -
ThreeTree, your experience sounds so similar to mine. I am so glad you found out abut protons and got it to happen!
I have healed beautifully and have nothing but good things to say about protons too.
Wishing you the best!
0 -
Santabarbarian - thanks much for your comments and good wishes. I wish you all the best too.
I also wanted to clarify a bit after re-reading what I posted before. If someone who did not know about protons read my post, I think they might wonder, "what's the difference?" given that the more immediate and "superficial" (yeah, right) side effects seem the same with both proton therapy and traditional radiation (radiation dermatitis, fatigue, and having to go every day for weeks, etc.). The big difference though, is in the longer term and initially "unseen" side effects to the heart, lungs, and other surrounding tissues. It is my understanding that those areas of my body got probably less than 50% - 60% of the amount of radiation I would have received with photons/x-rays. This means that the likelihood of heart and lung problems down the road are way less than they would be had I gone the traditional route.
I agree with you that it is important to keep this topic alive and kicking on this forum. Only if others are aware of this option and demand it, will it become more mainstream. I can't help but think there are people out there with long term side effect problems who would not have them had they known about and been able to get proton therapy instead of traditional radiation.
0 -
Because of the lack of referrals, these centers will work with patients whose insurance is balking. Mine did. They have spent a lot of $ and the machines run whether they are fully booked or not, so they may as well fill up by discounting.
Another later term SE of rads is "brachial plexopathy" which a friend of mine got -- it is horrific. I know someone with bad lymphedema too; I was very concerned about getting either of these. I googled my way to protons.
I cannot say enough good things about Procure. They were wonderful, personal, professional, and caring.
0 -
ThreeTree, welcome to Breastcancer.org and thank you for sharing your experiences with proton radiation therapy! If there's anything you need help with or have any comment for us, please feel free to contact us. We're always here.
Best wishes,
From the Mods
0 -
The proton center here in San Diego advertises a lot on local TV. If I had to do it I would certainly consider it
0
