1. < Prostate Cancer

Patient movement during proton therapy more problematic than photon?

Posted by carter777 @carter777, Aug 7 11:18pm

I am now 68 yrs old. My PSA level went beyond normal range in 2023 with a PSA of 4.3. Saw a urologist and had a prostate MRI w/ and w/o contrast. MRI indicated an anterolateral prostate lesion with a PI-RADS score = 5 = high likelihood of clinically significant disease, and that transcapsular extension of the lesion could not be ruled out. In August 2023 had a biopsy which took 9 random samples + 5 samples of the lesion. Pathology report came back indicating tissue in all samples were benign with a comment that the lesion showed "atrophic changes". Urologist congratulated me and said we would check PSA every 6 months.

March 2024 I saw my urologist. PSA had risen to 7.9. Had another biopsy in May which took 12 random samples + 4 lesion samples. Pathology results indicated the lesion is malignant (Gleason 4+4=8), and a tumor in the left portion of the prostate (Gleason 4+4=8). Had follow-up full body bone scan and pelvic/abdominal CT which both showed no evidence of metastasis.

Did a lot of reading about prostate cancer and decided to go to Mayo Rochester to pursue proton beam therapy if appropriate. Met with radiation oncologist who said I should get photon therapy instead as even though proton therapy is more precise and causes less damage to healthy tissue, there is more difficulty staying on target when a patient moves during treatment than with photon therapy. He told me that 9 other Mayo radiation oncologists that treat prostate cancer would tell me the exact same thing, that I should have photon therapy. Besides, he said, even if we submitted proton therapy to your Medicare Advantage insurance they would never approve it. I told him I had called my insurance company before I made the appointment and they said they would cover proton therapy for high risk prostate cancer (which includes Gleason 8). The doctor stated, oh you are covered by XXX insurance company? They are the worst, I can't get them to approve anything. Then he amended that to say that, actually, insurance company YYY was even worse and XXX was second worst. I was really surprised at this.

In this group I have seen posts from patients who obtained proton therapy at one of the Mayo sites and said they had great results. Has anyone in the group sought treatment for prostate cancer at Mayo and been told what I was told about more targeting difficulty with proton than with photon therapy? And heard the same thing about Medicare Advantage insurance? Honestly, I was left with the uneasy feeling that the real reason they push people away from proton therapy is because Medicare and Medicare Advantage reimbursement rates are too low for them. Do patients with insurance other than Medicare or Medicare Advantage have a better chance of getting proton therapy? Or if they pay cash up front and don't use insurance?

Thanks for listening... My next step is a PSMA PET scan next week to determine final staging of my cancer. As of today it is staged as 3a.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

westernflyer | @westernflyer | Aug 9 8:55am

I underwent proton radiation therapy in 2010 at Loma Linda, one of the early pioneers of proton radiation which was initially designed for children with brain cancer. I was fitted with a lower body cast; every morning for 2.5 months (weekdays), they retrieved the cast and fit me into it. Then they placed a balloon in the rectum and inflated it. This was done earlier to align and target the protons to the exact location of the cancer. I had T1a; Gleason 3+3' PSA 6.47. Diagnosed as "slow growth" The outgoing packet included a "for framing" "member of the Brotherhood of the Balloon"—insurance: TriCare for Life as retired military. Define if proton is covered. If so, then you may wish to proceed. As far as movment, there are ways to stabilize the body, like the procedure done then at Loma Linda. I understand now that "markers" of some sort assist the proton machine to better target the cancer. Information is power..always obtain a second or even a third opinion.

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carter777 | @carter777 | Aug 9 9:33am
In reply to @gently "hi, Carter, my treatment was seven years ago at CAProton. Original Medicare patients were automatic. Medicare..." + (show)
@gently

hi, Carter,
my treatment was seven years ago at CAProton. Original Medicare patients were automatic. Medicare Advantage waited the longest. Private insurers responded on appeal. CAProton was good at persisting and prevailing. I can recommend Carl Rossi (I'm probably not the only one who has to be careful not to call him Carlo). https://www.californiaprotons.com/team-member/carl-rossi-md/ You might not want to travel to a beautiful beach town, la jolla, and be stuck there for a month or so. He wasn't my physician, though.
The viewrays are hard to find partly because of the expense and partly because of a bankruptcy. Repairs were impossible until a wealthy Indian american intervened. The viewrays needing repair were immobilized. Meanwhile other companies filled the gap. The margins for the old viewray was 2mm, better than the 3-5mm for the other machines. A change in software for the viewray or improvements in other MRI guided machines may have changed the Viewray advantage. Which is to say in an extended fashion, you might ask about the the ROs about the margins. There are several Viewrays in CA and I know of one in NY. When I last spoke with Mayo there were none operative there.
No one recommended proton for me. Doctors were sidling up to whisper that I was making a big mistake. Who is your RO?

Jump to this post

Hi @gently ,
Thanks for the info on CAProton. Dr. Rossi's experience is very impressive! I will definitely try to learn more about them and consider treatment there. (I love San Diego. Have friends there and was stationed there MANY years ago while in the US Navy, when San Diego was a far smaller place. Love La Jolla, great beach memories.)

After reading the article, "Consensus Statement on Proton Therapy for Prostate Cancer" from 2021, I have a much better understanding of the movement issues during therapy. I had been thinking of the whole patient moving, but it is more the prostate moving due to things like the bladder filling, peristalsis, gas in the rectum, and the rectum filling with stool.
See the section "Technical Delivery of Proton Therapy". I don't have permission to post the link as a new member of this forum. It was published in "International Journal of Particle Therapy" and can be found through sciencedirect.com and nih.gov.

Kudos to you for pursuing your choice of proton therapy when doctors were advising against it. That takes strength and determination! Along those lines, I received an interesting
response to my initial post from @5galloncan who indicated that in conversation with many fellow patients undergoing proton therapy at UFHPTI they all indicated "no urologists or doctors outside the proton community recommended or mentioned proton treatment to them".

My RO at Mayo Rochester is Dr. Ryan M. Phillips, MD, PhD. His PhD is in pharmacology. Nowhere near the experience of Dr. Rossi I would say, by the way. He's been at Mayo for about 3 years, I estimate, after being chief resident at Johns Hopkins School of Medicine.

Good luck to you, and thanks again for sharing your experience and knowledge!

REPLY
1 reply
carter777 | @carter777 | Aug 9 9:56am
In reply to @5galloncan "It's interesting that while I was at UFHPTI in March/Apr of this year getting my 29..." + (show)
@5galloncan

It's interesting that while I was at UFHPTI in March/Apr of this year getting my 29 proton treatments, they held biweekly men's meetings for those getting prostate treatment. To a man, when asked, nobody reported that any urologists or doctors outside the proton community recommended or mentioned proton treatment to them. I'm talking about dozens of men over a 6 week period. So the thousands of men who have been fortunate enough to find out about and receive this treatment (in my opinion), had to discover it for themselves or find out from men they met who shared with them about proton therapy for prostate cancer. I discovered my prostate cancer by chance when my PSA began climbing a year ago. I see a nurse practitioner for regular medical treatment and she ordered a 3T MRI and everything cascaded from there. She actually recommended I seek TULSA up in Tampa, FL, but after exploring it, I didn't want to chance the cash expenditure on something that likely wouldn't get all of the cancer. So through my own research, including forums like this one, and visits with 6 different physicians treating with different therapies, I ended up at UFHPTI in Jacksonville. Prostate Cancer is one strange malady where you have to research the many treatments available and then pick your own poison before the clock runs out. On top of all of that, then you wait and see if you were correct. Sometimes you can wait for years to find out. But considering the alternative of finding out too late that you have advanced prostate cancer, it's not bad to find out early and then make your own decision. Good luck to all.

Jump to this post

Hi @5galloncan ,
Thanks for sharing your experience at UFHPTI. It amazes me that all of these patients had to discover proton therapy for themselves. That is the case for me as well, my urologist never talked with me about the various methods and modes of radiation therapy for prostate cancer. I am continuing to investigate the options and will follow up with other physicians once I have my PSMA PET scan next week. (Fingers crossed...)

You summed up the malady very well and the challenge of researching on your own and making a choice. I am learning with each day.

Wishing you many years of good health. Thanks again!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 10 1:55pm
In reply to @carter777 "Hi @gently , Thanks for the info on CAProton. Dr. Rossi's experience is very impressive! I..." + (show)
@carter777

Hi @gently ,
Thanks for the info on CAProton. Dr. Rossi's experience is very impressive! I will definitely try to learn more about them and consider treatment there. (I love San Diego. Have friends there and was stationed there MANY years ago while in the US Navy, when San Diego was a far smaller place. Love La Jolla, great beach memories.)

After reading the article, "Consensus Statement on Proton Therapy for Prostate Cancer" from 2021, I have a much better understanding of the movement issues during therapy. I had been thinking of the whole patient moving, but it is more the prostate moving due to things like the bladder filling, peristalsis, gas in the rectum, and the rectum filling with stool.
See the section "Technical Delivery of Proton Therapy". I don't have permission to post the link as a new member of this forum. It was published in "International Journal of Particle Therapy" and can be found through sciencedirect.com and nih.gov.

Kudos to you for pursuing your choice of proton therapy when doctors were advising against it. That takes strength and determination! Along those lines, I received an interesting
response to my initial post from @5galloncan who indicated that in conversation with many fellow patients undergoing proton therapy at UFHPTI they all indicated "no urologists or doctors outside the proton community recommended or mentioned proton treatment to them".

My RO at Mayo Rochester is Dr. Ryan M. Phillips, MD, PhD. His PhD is in pharmacology. Nowhere near the experience of Dr. Rossi I would say, by the way. He's been at Mayo for about 3 years, I estimate, after being chief resident at Johns Hopkins School of Medicine.

Good luck to you, and thanks again for sharing your experience and knowledge!

Jump to this post

@carter777, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Allow me to post it for you:
- Consensus Statement on Proton Therapy for Prostate Cancer https://www.sciencedirect.com/science/article/pii/S2331518024000350?via%3Dihub

REPLY
1 reply
carter777 | @carter777 | Aug 10 11:39pm
In reply to @colleenyoung "@carter777, I noticed that you wished to post a URL to an article with your post...." + (show)
@colleenyoung

@carter777, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Allow me to post it for you:
- Consensus Statement on Proton Therapy for Prostate Cancer https://www.sciencedirect.com/science/article/pii/S2331518024000350?via%3Dihub

Jump to this post

Thank you @colleenyoung ! I appreciate your help and explanation.

REPLY
jc76 | @jc76 | Aug 11 10:40am

@carter777
I see a lot of posts and probably already mentioned. Regarding insurance Medicare does pay for proton radiation and does not need to be a certain risk level. I was diagnozed with low risks by Decipher tests (which Medicare paid for) and they covered my proton radiation at UFHPTI in Jacksonville Florida.

I have been a patient at Mayo Clinic Jacksonville. However Mayo Jacksonville does NOT have proton only photon radiation. They are building a new cancer center that will have proton radiation.

So even though all my tests were done at Mayo I chose proton radiation at UFHPTI which has an outstanding proton radiation treatment institutions. They have the most state of art equipment and tech and 5 gantries.

My primary care doctor at Mayo was the one who asked me to get second opinions and consider proton. I have never heard what your R/O were saying about the movement. Most all radiation treatments use what they call markers. This is when low dose xray is done prior to radiation to make sure you are lined up before treatments. This is ongoing during your radiation treatments.

The photon radiation new treatments are very good and improved from years ago. The biggest difference is that photon radiation goes in and out the body. Proton enters at lower dose, radiation is released at the program area AND DOES proceed through the body.

But there are many opinions out there but it is your body and your decision and don't be bullied or intimadated into something you are not comfortable with and feel is best for you. Do research and get second opinions. And by second opinions meaning a different treatment facility.
Good Luck!!

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