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.

bettwils16 | @bettwils16 | Dec 4, 2022

In reply to @dandl48 "Yes, it was Proton Radiation. Are you having it and if so, may I ask where?..." + (show)

May I ask where your cancer is?

dandl48 Dave | @dandl48 | Dec 4, 2022

@bettwils16 Prostate

davester | @davester | Dec 4, 2022

Is the MRI radiation therapy the Proton treatment with 5 times?
Thanks for info.
I am still in decision time.

melcanada | @melcanada | Dec 5, 2022

In reply to @davester "Is the MRI radiation therapy the Proton treatment with 5 times? Thanks for info. I am..." + (show)

I did 40 sets of radiation My choice as other was not proven at the time Check success rates

dougs411 | @dougs411 | Dec 5, 2022

I just completed my pre-treatment work up having the markers and spacer installed. I just have to say that I was blown away by the docs and the very caring staff who did all the work. I am so happy I made the call to come to Mayo Clinic Rochester to have my cancer treated.

Doug

rockin2047 | @rockin2047 | Mar 19, 2023

In reply to @bens1 "I have Gleason 3+4. Still evaluating but settling in on MRI radiation therapy. As they radiate,..." + (show)

I have a Gleason 3+4, and also two Gleason 3+3 with a PSA of 3. Am currently waiting on the results of a Decipher test. Of the treatment options you have researched which one offers the best chance for eradicating the cancer while preserving healthy tissue?
Regarding radiation therapy WEB MD said "can also cause significant side effects such as erectile dysfunction and incontinence. But many of these less-invasive procedures(treatments) don't always completely eliminate the cancer, and some treatments can't be repeated if the cancer comes back." Then there is High-intensity focused ultrasound (HIFU): which delivers intense sound energy to destroy the tumor without damaging the surrounding tissue. WEB MD said "Side effects included difficulty urinating in the first two months after treatment, but the symptoms were easily treatable with medications." HIFU is a form of ablation treatment. HIFU generates heat to destroy the tumor while another form generates cold to freeae the tumor.
What are your thoughts?

bens1 | @bens1 | Mar 19, 2023

rockin2047: a lot has happened since I posted that in November as a patient but to answer your questions, the MRIdian was what I ended up using. It was 5 treatments with 2 mm margins. My last treatment was February 14. The margins are really important and the margins are from the edge of the prostate. I had the same concern as you regarding healthy tissue. So far the side effects for me are some urine restriction but Flomax gives me about 85% urine flow and I feel a bit more tired than usual.

I looked into HIFU which struck me as limited data with results that anecdotally did not last. I looked into cyberknife, brachytherapy, cryo and heat ablation…and narrowed it down to Proton therapy and the MRIdian from Viewray. I chose the MRIdian for its narrow margins, real time MRI/radiation combo unit and automatic gating shutoff.

I did not spend any time on webmd. You may want to look at nccn.org formed by Dr’s for Dr’s and patients. I would also consider spaceoar.

jb2buckwater | @jb2buckwater | Mar 20, 2023

Bens1 did his research... everyone should do the same. Speak with multiple Drs and Patients. Most patients I fear rush into a decision and have a Radical Prostectomy because this is what their Urologist does for a living.

I chose the Mayo Rochester 5 Treatment Proton SBRT. Last treatment January 19. I experienced some urinary restriction post treatment as well as minor fatigue. Urinary restriction was not sufficiently bad to cause me to try Flomax. Many choose this route and it makes perfect sense if restriction is painful and or disruptive.

New procedures and techniques are progressing continuously. Stay on top of it and review prior to making any decision on treatment approach best for you.

Best wishes and God Speed.

mikewo | @mikewo | Mar 20, 2023

In reply to @rockin2047 "I have a Gleason 3+4, and also two Gleason 3+3 with a PSA of 3. Am..." + (show)

I am about to start 5 treatment proton radiation and after seeing the article on a study just out on localized prostate cancer I am wondering if being treated is even worth the risk. The study followed 500 each of a prostatectomy, radiation, and doing nothing but watching it for 15 years and the death rate from prostate cancer was the same at 15 years for all three. That makes me 90 and I am wondering if risking the side effects is even worth it and the doctors sure won't tell you to not do anything as then they don't get paid. The article did not mention Gleason Scores but just that it was localized prostate cancer. What quality of life will we all have at 90?