Meeting up with others who are having Proton Treatment

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!

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.

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.

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.

Welcome, @ncworried. You may wish to connect with other members who are talking about ocular melanoma in these discussions:
- Malignant melanoma of the choroid in the eye
https://connect.mayoclinic.org/discussion/malignant-melanoma-of-the-choroid-in-the-eye/
- Melanoma of the eye: What helps with pain?
https://connect.mayoclinic.org/discussion/melanoma-of-the-eye/

anyone has experience with California Proton Treatment center in San Diego?

Avall, I was there in 2017 for rectal cancer. How was your exchange with Kishan today?

gently,
I am very impressed with Kishan. He explained SBRT treatment on MRILinac machine and the accuracy of radiation delivery to a moving target. They took a mouth swab to make sure I am eligible for SBRT.
I will be talking to Dr Rossi in few days. It will be either Rossi or Kishan for me.
Thank you for your support and others on this group.

jc76,
can you point out the post about MRI guided Proton Treatment? That would like MRILinac techonology? I didn't know any proton center that has the techonology.

@ava11 It is not MRI guided proton treatment but MRI of prostrate to align radiation treatments.

What I had was a low dose xray that looked at my gold markers put into my prostrate. This allowed the radiation treattment tech to align the proton device to target the radiation to the prostrate. And many times they did adjust my position and proton device to align with the prostrate parameters.

When they move the proton gantry to the other side of my body (this is done with gantry moving over you) they again do an xray to make sure the prostrate and body position is correct for the parameters for treatment. The xray is not on during treatments but before and after. The prostrate can move from one treatment to another and even between the left entry and right entry time proton radiation is being done.

What my post referred to was instead of using a low dose xray the poster was saying their check and adjust were done using a MRI to set up the paramaters for the proton treatment.

I cannot have a MRI to set up my parameters each time as I have a ICD/Pacemaker and have to take special precautions when having an MRI. I did have a MRI when doing MRI of prostrate to determine suspicious areas. In that case they turned off my pacing of my ICD/Pacemaker. Even doing the lose dose xray and proton radiation they required me to get a check of my ICD/Pacemaker once a week and send results to them to determine any interference with ICD/Pacemaker from the radiation I was getting.

Hope that answered. I have read that some photon (not proton) radiation uses MRI guided during the treatments but have not seen a specific one that mentioned proton. Don't know if out there but sure would be a plus if it were for those unlike me with a AICD/Pacemaker.