Meeting up with others who are having Proton Treatment

Posted by dandl48 Dave @dandl48, Sep 15, 2020

My wife and I had a very pleasant afternoon when we met up with 2 other men who are undergoing radiation treatment at roughly the same time as me. I met one of the men on this forum and the other was staying at the same place as the first. We exchanged our thought processes in choosing what treatment we picked, any "Buyer's Remorse" after choosing radiation and just talked about life in general. It was a very calming day and I hope to meet up with them again. I start SBRT on Thursday while the other man started his yesterday. Why did I post this? It's because the meeting of men in a similar boat away from Mayo relaxed me and reassured me that my choice was the correct one. This can help you also.

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

Hi, I’ve been diagnosed with ocular melanoma and I have to decide whether to have the eye removed (enucleation) or opt for proton beam Radiotherapy. I would prefer to keep my eye but worried about recurrence of melanoma. Anybody have experience of either treatment.
I really would appreciate any help you can provide.

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@needsadvice

How many proton treatments over how much time? Hw long is each therapy?. No one has mentioned this to me. only external radiation , radical prostectomy or radioatvie seed.

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needsadvice,
All depends on what treatment is designed for you. If your team wants to do prior implanted Space/Oar you will not have to have a balloon inserted prior to treatments which causes more time before treatment starts.

If you team wants prior implanted markers then those are used each time to align proton beam therapy. I read one post about MRI Proton where markers were not used but real time MRI monitoring and if prostrate moves machine shuts down. This would cause a delay in treatment also.

I even read one post with an enema before treatments. I never had to do that. I did prior to some of the tests done but not during treatments.

Your team may recommend high dose which is 5 treatments or low dose which can be 20-40 treatments (mine was 30). I did 5 treatments a week for 6 weeks. I am told the high dose is 3 days one week and 2 days the next. Probably time of treatments is around 10 minutes but that depends on each individual and their treatment plan.

How much time? All depends on the preps. My procedure was very fast. Laid on a special bed that was made specifically for me to keep me in same position each time. Then a low dose xray to look at markers and adjust table as needed. Then the treatments which last around 10 minutes. The total time I was on table was around 15 minutes. There was one time I was told I had gas and had moved prostrate (it will move around) and had to adjust table.

I drank water before hand to move away bladder. I hope this information helps. All that would be explained by your oncologist/radiologist and if not go somewhere else for treatments.

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@jb2buckwater

jc76,
Smart. You did your work... researched, evaluated and made a choice to treat. I think you did the right thing and can now only wish you the best success in your desire to cure this. Many no longer even to name Gleason 6 as "Cancer". I tend to agree but due to my high PSA, 10.5, figured I should treat now rather than wait. All treatments have some risk but Proyon Beam seems to be least likely to cause damage outside the prostate.
Best Wishes, Full Recovery!

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Agree jb2buckwater, I was told by my urologist that I would not die from my prostrate cancer. I was a 3+4=7 but my Decipher showed low risk.

The biopsies are a more exact determination of cancer. Did you have biopsy? What was the findings?

My PSA was actually still in normal range but rising each time tested. Primary care doctor did not like so referred to urologist. I am glad I proceeded with treatment knowing even though my cancer was low risk I was taking the steps to cure it.

The watchful waiting may be okay for some but for me I want to address any cancer or even probable cancer and not let it grow.
Good luck, and thanks for feedback.

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@jc76

jb2buckwater, I chose proton beam therapy at UFPTI. Mayo Jacksonville only offered photon. Even though Mayo Jacksonville has had excellent results with the photon I wanted to do everything possible to reduce the damages affects of radiation as I could.

I came to conclusion with my primary care doctor concurring if doing proton would help reduce radiation damage that is the path I was going to choose. Both proton and photon have the same cure rates. The main difference is that proton releases very little radiation going in and NONE coming out past prostrate.

Photon cannot do this and passes through body, prostrate and out the other side of body.

You will read a lot of pros and cons of doing both. But you are the boss of your treatments and if you do research, get a couple of professional medical opinions, you chose what is best for you.

One thing I will mentioned is try to have the Decipher test done, PSMA and a bone scan.
Decipher will define the risk of your cancer metastasizing. You mentioned having intermediate. That was my initial prognosis but after Decipher was reduced to low risk. My Gleason worst score was 3+4=7.
PSMA will show if cancer confined to prostrate.
Bone scan will determined if spread to bones.

I did not know about Mayo Clinic Connect (MCC) back when I started researching treatments. I learned about these additional test through MCC. if I had known about them I would have asked for them right away. I did have all of them done but would have really helped knowing about them initially.

Good luck!

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jc76,
Smart. You did your work... researched, evaluated and made a choice to treat. I think you did the right thing and can now only wish you the best success in your desire to cure this. Many no longer even to name Gleason 6 as "Cancer". I tend to agree but due to my high PSA, 10.5, figured I should treat now rather than wait. All treatments have some risk but Proyon Beam seems to be least likely to cause damage outside the prostate.
Best Wishes, Full Recovery!

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@jc76

mikewo, did you have an hormone treatment with your radiation? I did the 30 rounds of proton at UFPTI. My PSA at 3 months after was 1.2 down from 3.75. I was told by oncology/radiology that goal was below 1.

If yours was .1 that is great. Because if you still have your prostrate you will have PSA. I wish I lived closer to Phoenix and Rochester as would have had the proton done there as Mayo Jacksonville does not have proton so could only do photon.

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Look up my comment to web365 on the topic of "Recently diagnosed" topic as it has my answer to your question about ADT.

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@marshallfeller

I am in the process of obtaining a consult with Mayo in Rochester to see if I am a canidate for the the 5 treatment proton therapy. I am curious for those that have had this treatment, what was your wait time from the initial consult to when you could start the therapy process?

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Wish I could help but had the 30 rounds of proton at UFPTI in Jacksonville. My initial consultation and treatment start took several months.

Not sure but you probably will discuss Space/Oar and Markers which is a procedure usually done prior to radiation treatments. You also need to discuss Decipher, PSMA, and bone scans. All of these fine tuned you diagnosis and best treatments for you.

When I had my proton they did entire prostrate and margins. They did this to ensure that even though I had 20 biopsies you can still miss an area or spot in prostrate and thus treat entire prostrate.

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@mikewo

It was not long at Mayo Phoenix. I could look up my notes, but I was looking at % treatment photon at the same time so some of the delay was probably me. Do the 5 treatment SRBT Proton treatment as it is a piece of cake. My 3 month PSA after was less than .1 or undetectable.

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mikewo, did you have an hormone treatment with your radiation? I did the 30 rounds of proton at UFPTI. My PSA at 3 months after was 1.2 down from 3.75. I was told by oncology/radiology that goal was below 1.

If yours was .1 that is great. Because if you still have your prostrate you will have PSA. I wish I lived closer to Phoenix and Rochester as would have had the proton done there as Mayo Jacksonville does not have proton so could only do photon.

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@popkovas

Hello!
Is there someone who can share their experience about proton therapy?

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popkovas, you are going to get a lot of replies on this. I had proton therapy at UFPTI. Mine was 30 treatments (5 days a week for 6 weeks). The treatment itself is a peace of cake. Probably 10 minutes on table getting treated and rest of time is just prep to make sure all is calibrated.

It is the prior testing and procedures like Space/Oar and markers that can be tacking only because they take time to do.

I was not offered the 5 treatment option but the pencil beam. They mentioned I could have done a different type but I have an ICD/Pacemaker and their physics department wanted to keep the radiation as much as possible restricted to not interfere with ICD/Pacemaker.

I think going with proton is a personal decision but try to use a well known and experienced facility. The cure rates of both proton and photon are the same. It is the factor that proton radiation had very little radiation going in and not going past prostrate where photon continues through and out the body.

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@jb2buckwater

Gleason 6 Intermediate evaluating RT options. Sounds like PB SBRT is a good path forward compared to other options. Thoughts?

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jb2buckwater, I chose proton beam therapy at UFPTI. Mayo Jacksonville only offered photon. Even though Mayo Jacksonville has had excellent results with the photon I wanted to do everything possible to reduce the damages affects of radiation as I could.

I came to conclusion with my primary care doctor concurring if doing proton would help reduce radiation damage that is the path I was going to choose. Both proton and photon have the same cure rates. The main difference is that proton releases very little radiation going in and NONE coming out past prostrate.

Photon cannot do this and passes through body, prostrate and out the other side of body.

You will read a lot of pros and cons of doing both. But you are the boss of your treatments and if you do research, get a couple of professional medical opinions, you chose what is best for you.

One thing I will mentioned is try to have the Decipher test done, PSMA and a bone scan.
Decipher will define the risk of your cancer metastasizing. You mentioned having intermediate. That was my initial prognosis but after Decipher was reduced to low risk. My Gleason worst score was 3+4=7.
PSMA will show if cancer confined to prostrate.
Bone scan will determined if spread to bones.

I did not know about Mayo Clinic Connect (MCC) back when I started researching treatments. I learned about these additional test through MCC. if I had known about them I would have asked for them right away. I did have all of them done but would have really helped knowing about them initially.

Good luck!

REPLY
@popkovas

Hello!
Is there someone who can share their experience about proton therapy?

Jump to this post

I had proton treatment for rectal cancer five years ago. It was Scripps then, now California Proton. I'd done research for a friend and know upon diagnosis that I would have Proton. In my case I was avoiding chemotherapy. The diagnosing physician was upset enough to say, "Don't you dare." Dauntless, I flew to University of Pennyslvania where they refused to treat without chemo. I few more trips around and I ended up in San Diego. Dr. Giap ( he is in Florida now) agreed. The following week, I had testing, tatoo markers and the week after began a six month course. I am five years clear, so considered cured.
The treatment itself was painless. I'd spend 30 minutes at the clinic. The actual positioning, summoning of the beam and the radiation was maybe ten minutes of the thirty.
It was easier than any treatment I've every heard of. All of the md's, except at CA Proton told me I was doing the wrong thing.
If you haven't had genetic testing of the tumor itself, somatic testing, you might consider having that done, even if you have to fight for it.
Wishing you the best luck. If there is anything more you think I might know, I'm happy to talk about it. It was a good experience from beginning to end.

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