Proton Therapy anyone?

Ladyc2020

I spoke with the 2 places who do this in California and they are sending me information. The more I am reading about traditional radiation, the more I hope proton therapy is possible for me.
Im wondering Who may have had this and how was it, long and short term effects?

SpecialK

Use the search function and look for proton rads, I believe the member santabarbarian did proton rads, you might send a PM. with questions. Wishing you the best!

MinusTwo

My brother traveled to Loma Linda for proton radiation for his prostate cancer. I understand they are one of the first in the country to have this kind of equipment so one would assume they have lots of experience. He was very happy with the results.

metooat71

I also had proton radiation last year in December, , at the center in Oklahoma City. my cancers were 1cm, and 1/2 cm, stage 1, grade 3, ER+ PR+ HER-

I had 10, 10 minutes sessions over 2 weeks, with 0 side effects, not even a skin irritation. it was a breeze !

they followed up with full body pet scan, and again with upper body scan, the next and last follow up will be at the 1 year anniversary in December

everything is clear of cancer, knowing that, was the best news I could have had, so liberating ! , I talked to a lot of other patients, men and women, while going there and the attitude of everyone was the same, they were so glad that proton existed.

santabarbarian

Yes, I did proton rads. I went to ProCure in NJ (in order to be near family members) since Id have to relocate to do it in CA anyway. they were wonderful. Very professional and very kind.

I was extremely happy w proton rads. I also took a followup medicine called pentoxyfiilline. I have no complaints. No lymphedema or other problems. I did get some serious skin peeling but it healed rapidly and was tolerable.

ThreeTree

I too did proton therapy and have no regrets. My tumor was on the left side and my understanding is that there is less likelihood of heart damage from protons than standard photons. I was told that there is no difference between proton and photon in terms of the number of sessions you have, or with the skin issues, and that was my experience. I had some slight redness over the whole radiated area and one old spot that was previously sunburned a lot that got to the point of what I think they call "dry peeling". I did not have any of the blistering and wet weepy stuff that you hear of some having. That was all, but there was another woman there that I talked with sometimes who said she had to take a week or two off temporarily, due to skin issues, so it's not impossible that you could have trouble. My tumor was large and I had started to get lymphedema just from the tumor itself. It actually got a little better after the surgery, but it does seem that the protons made it worse, and I believe that any radiation can do that. Mine went from "mild" to "moderate" a few months after the protons.

Not knowing how old you are, there is also the issue of insurance coverage. Medicare does cover it, but it still leaves you with quite a big co-pay of several thousand dollars, unless you also have a supplement that picks up the balances. Some private insurances pay, some don't, and some pay after an appeal after a denial. In addition to Medicare, I also have insurance through work and first tried to use that insurance, but it was denied. That's when I signed up for Medicare with a supplement, and that covered it all. Later and after the center appealed, the private work insurance decided that in my case it was necessary and agreed to pay, but Medicare already had, so they really skirted the whole thing. The center I went to was willing to reduce the cost dramatically for those without insurance, but you would have still had to have come up with $10,000. The financial people at the center were a big help and helped me weigh and understand different ways to get it covered. I went with Medicare and a supplement plan that picked up the balance/co-pay.

I also took turmeric throughout the sessions as I had read that it can help keep the inflammation/redness down. I also had a lot flaxseed everyday on my cereal and in my yogurt, because I also read that flaxseed looks as if it can help with fibrosis that can develop after treatments. I also used the calendula cream/lotion that is recommended and some other lotions that I happen to like. Whether any of this actually helped me from having any more problems, I will never know, but I did come through the process fairly unscathed. I began my treatment about a year ago exactly, and I was done in mid to late November of last year. Other than the lymphedema issue, I have had no other problems whatsoever. Oh, and I was fatigued - especially so near the end, and remained that way until about Christmas of last year.

Hope all of this helps - good luck to you!

Dreamhome

I had a lumpectomy and sentinel node biopsy 9/22/20. Surgery went well with great cosmetic results. There were cancer cells in the one sentinel lymph node so I will have radiation. My surgeon recommends proton therapy because the lump was in my left breast and said this was safer for my heart. I have an appointment with the radiologist next week. Their office has already checked on insurance coverage and told me that Medicare and my supplemental policy will cover all the costs of the proton therapy. My oncologist recommended that I meet with another radiologist to discuss standard radiation. She said this is a proven treatment while the proton therapy doesn't have the data yet to determine if it is as effective as the regular radiation. She also said the risk of damage to the heart is minimal. My sister in law who has successfully battled stage 4 cancer for 15 years (and had radiation on her left breast twice through two bouts of cancer) checked with her sister who is physician. Her sister agreed with my oncologist that standard radiation would be the best course. I will meet with both radiologists and decide. Any more input from the group would be appreciated.

ThreeTree

I also met with both radiologists. The standard of care where I got treatment was to do traditional radiation. I discovered and researched the proton option on my own. The proton radiologist told me much of what Dreamhome was told, i.e. that the data is not as solid yet for protons as it is for photons. She also said that the gap between protons being more effective than traditional radiation has been getting smaller over the years, due to improvements in traditional radiation. After speaking with both radiologists I still decided to go with the protons. While they don't have decades of data for it like they do for traditional radiation, they do have some serious and quality study results from many years, and that data seems to demonstrate a superiority of protons in many ways.

Ladyc2020

thank you everyone for all your input. I do not have Medicare (age 44) so cost will be a problem for me. It seems proton therapy is an emerging treatment for left sided breast cancer and there isn’t a ton of data out there yet, however what is known is very promising.

I am concerned about longer term side effects of traditional radiation, due to location of the cancer. I’ve contacted a number of clinical trials, and may qualify for one. If not, I’m not sure exactly what I will do. I have another zoom appointment next week and meanwhile will be looking at everything. I have a lot of questions for the RO which may help me decide what to do.

ThreeTree

Ladyc2020 - Seattle Cancer Care Alliance has a study going on. They do a computer coin flip as to whether you get put in the proton group or the traditional radiation group. At least with that you have a 50/50 chance of being able to do the protons for no cost. A woman I spoke to during my treatment was part of that study and she had been randomly assigned to the protons and was happy. I didn't want to take the chance of being assigned to the traditional group, so declined to be in the study, but if you really are comfortable either way, you might want to give it a try. I don't believe you have to be in Seattle at all to participate. My understanding is that centers around the country enroll people.

Ladyc2020

threetree- thank you for that info. I would be ok if I was put into the traditional rads group... all in the name of research. I think of the women who have gone before us and accepted whatever Was being researched. My personal hope is I can do proton therapy in a clinical Trial. And If it has to be traditional, how awesome to be part of research which may change things for future women 🙏🏼

ThreeTree

I think this is the trial. I don't know if they are still enrolling people or not. Looks like there is also a link to the NIH that might have more info. I know there are many other researchers involved also, beside the Dr. Fang who is listed. This is the only one I know of, but there certainly could be more. I know what you mean Ladyc2020 about feeling good helping with research. I would feel that way too, but I just wanted to look out for my own health first of course, so went with the certain ability to get the protons.

https://www.seattlecca.org/clinical-trials/breast-...

Dreamhome

I had a 2 hour consultation with the proton therapy group (Provision) yesterday. The radiologist I spoke with does proton therapy at this location and regular radiation at another hospital. He didn't try to sell me on either treatment, but clearly gave benefits of proton for my left side breast cancer. I was quite impressed with the facility and personnel. I have an appointment Monday with another radiologist (recommended by my oncologist) but I will be very surprised if I get information that would cause me to choose the traditional route. I will give an update after Monday. I would like to hear from anyone who has had proton therapy that was covered by Medicare and a Medicare supplement. I am told I will have no expense but need to verify first.

Waiting for the results of my oxcotype test - should be next week.

Ladyc2020

threetree- yes one of the places is part of several Trials and it sounded like I could be a candidate for one. It comes down to insurance.... I’m 44 and don’t have Medicare.

Dreamhome - good luck with making your decision!

Dreamhome

At my oncologist's recommendation I had a consultation with another radiologist that does photon (regular) radiation. Regular radiation offers shorter treatments (3 weeks instead of 6), shorter time for each treatment (15 minutes vs 1 hour on site), and less area to receive radiation (whole breast, lymph node 1 area vs whole breast and lymph node areas 2 and 3). It seems that experience has given this method a better way to deliver radiation in a quicker way that does not affect the heart as it did in the past. I would like to hear from those of you who had 3 weeks vs 6 weeks of radiation. I'm told that studies have shown 3 weeks to be just as effective with far less side effects. I'm still waiting for the results of the oncotype test to see if chemo is warranted - waiting is the pits! Hope you are all doing well.

Ladyc2020

Hi Dreamhome,

Did you decide what next for you?

I am starting traditional radiation after all due to various factors... waiting time, insurance and also my RO is using various techniques to minimize effects. I will be having 4 weeks plus a boost.

Dreamhome

Hi Ladyc2020. I decided on traditional radiation because it involves fewer weeks of treatment (6 vs 4) and only one area of treatment instead of 3. My insurance fully covers the proton but I am more comfortable with the traditional. My oncologist and a doctor relative both recommend the traditional because it is still the "standard of care". By the way, each proton treatment was going to involve about an hour start to finish and the traditional,15 minutes. I will start treatment after release from my surgeon Nov,3.

I started taking Anastrozole 6 days ago and so far so good. I read that a lot of the side effects appear in the first few days so I hope that is right. I get a slight headache and very mild dizziness for a short time mid afternoon, and feel a little drowsy. Yesterday for the first time I felt moody and agitated - I hope this doesn't last long. I take my pill in the morning and am wondering if I should switch to night. I want to continue as is for awhile to keep track of symptoms without changing anything. How are you doing with the tamoxifen?

I still have a very slight tenderness at one place in my breast from my lumpectomy. Did you have tenderness after 4 1/2 weeks?

Dreamhome

I forgot to add - no chemo!! My oncotype score was 17.

Ladyc2020

hi Dreamhome that’s great news about not needing chemo.

What date was your lumpectomy? Mine is mostly not sore though I do have a vague ache still .... my breast and down to my elbow. I also have a thread sticking out and see my surgeon tomorrow so he can snip it off. I am also going to ask about my margins... on my pathology report it states they are 1mm whcih doesn’t seem very big to me.

When do you start radiation? I’m still waiting for my start date. The simulation was non eventful.

Dreamhome

My surgery was 9/22/20. I have to be cleared by my surgeon on 8/6/20 before my visit with radiation on 8/13/20 for the CT simulation and markings. Hope to start radiation treatments the next week.

walkingmydestiny

Hello Three Tree,

If you do not mind me asking what Medicare supplement plan did you purchase? I turn 65 this June and I am currently looking for a good supplement plan, I thought this site could help me find a good plan. I feel I need something that

would help pay for future health problems since I had BC. I also live in WA state.

thank you

walkingmydestiny

ThreeTree

Walking my Destiny - I just saw this today - maybe too late to catch you. I got the AARP more complete one. If you look on the site, there are only 2 plans available in WA via AARP. I got the more comprehensive one. It is expensive, but it picks up just about all Medicare covered co-pays and balances. The financial people at the proton center told me that most people have told them that they would rather pay premiums than balances and co-pays, as overall it just makes things easier/simpler. Hope this helps all this time later.

Ker1hay

h

Hello, I met with the RO before deciding about partial mastectomy vs mastectomy, in order to ask about side effects to my heart ( left side). She never mentioned proton therapy. But they do have the hypofractionated radiation ( the quicker traditional one) and have methods to protect the heart. Plus she showed me they will really avoid my heart because it’s far away from the chest wall. My DCIS is grade 3 , 8 cm and along the chest wall Now I’m wondering if I should ask about the proton beam treatment and I’m guessing that not every center/ hospital offers it? Do you think proton beam is much safer, is it more targeted? Really appreciate all the posts here