Proton Therapy: any long term side effects? Any regrets?

So I've given up on sit-straight bike riding even with better seating. There's just too much downward/upward pressure on the prostate and so I've gone back to a recumbent trike. We'll see how this works out.

Hi dpcarrie. I’m going to Mayo Scottsdale, getting ready to start the process for my 5 fraction proton therapy. Can I ask you who did the therapy on you? Can you provide any additional info about your experience there?
Hope you are still doing well!

My Radiation Oncologist was Dr Yu. He treated my Grade 10 as we had agreed upon. Today I'm feeling quite well with NO after effects. Close to 3 years now. My experience was quite positive. The nursing staff was exceptional in their job performance and personal interaction. Fine people. The prep for radiation therapy is quite personal. You will have a balloon inserted into your rectum to raise organs out of the way so as not to damage them from the proton beam. The team was exceptionally professional. We talked, we laughed, we were friends. The proton beam was not fealt at all. You are positioned on a moving table and oriented as needed thruought the proceedure. At all times the staff are talking to you. There was absolutely no sensation whatsoever. After the first couple sessions I preferred to just take a nap. At the end of the session the balloon is removed, you get up off the table, get dressed and drive home. Piece-of-cake!

Go do it!

We just had a consultation in Loma Linda for my husband, and they said they stopped using bio-protect spacer because it causes colon bleeding.

We just had a consultation in Loma Linda for my husband, and they said they stopped using the spacer because it causes colon bleeding.

That’s the “operator error” that I mentioned earlier. The spacer gel is injected directly into the perirectal space between the prostate and the rectum.

As is indicated in the SpaceOAR Instructions for Use (https://contentstaging.spaceoar.com/assets/LCN-80-3101-001-en-Rev-D_SpaceOAR-System-10mL-IFU-CAN.pdf), the
SpaceOAR needle should be inserted under ultrasound guidance to maintain needle tip visibility and prevent rectal wall penetration. In the US Clinical Study inadvertent rectal wall needle penetrations were experienced in 1.4% of subjects.

So, as long as his doctors at Loma Linda injected it correctly - and don’t penetrate the rectal wall - there was no risk for rectal bleeding.

I agree with @brianjarvis. The expertise with technique is really important. Doctors, in general, are not anxious to talk about mistakes or bias’s they may have personally or professionally.

The use of spaceoar is still used at centers of excellence. The separation between the rectum and the prostate when radiation is applied can impact side effects from radiation exposure, and therefore quality of life.

Reference Space/Oar or balloon, to help move colon away from prostate and drinking water to move bladder away from prostate prior to radiation treatments.

Both Mayo Jacksonville and UFHPTI do the Space/Oar and drinking water to help move the colon and bladder away from prostate as that is the organ you are treating with radiation.

My Mayo PCP advised me several months ago Mayo and other major centers were doing studies to see if the Space/Oar and drinking water were making significant improvements in side affects to make recommendations for them to continue.

My PCP the study was to realize both require a invasive procedure and want to make sure is warranted. I sure wish studies like these and the long term stucy being done at UFHPTI (Federal Grant) feedback was available before I had treatments. But glad to see so much research and studies being done to help improve the impact of treating prostate cancer with radiation.

For me there is a big difference in getting photon radiation where radiation continues through body versus proton where the radiation stops at a pre determined spot and does not continue through body nor does it enter at full dose either.

I agree with posters that Space/Oar type implants, markers, need to be done by experienced urologist as it makes all the difference.

I know I had minor side affects for locations outside the prostate but I did have issues with frequent and urgent urnination, and no orgasm seminal vessal damage, but that is to be expected as radiating those vessels inside the prostate.

Isn’t Loma Linda supposed to be one of the CoE? I expect that their urologists must do this all the time. Is this an inevitable 2% error rate. If not, how do we avoid these errors?

Loma Linda like UFHPTI has been going proton radiation treatments since 2006. Both were leaders in the proton radiation treatments.

I am not sure about the availability of of information packets but UFHPTI offers a free information packet. The packet is free and fed ex to you. If comes with no pressure to come there but if you want to or to just discuss coming there the e-mails and phone numbers to call.

The packet contains 2 books everyone talks about (one is Walsh) book along with tons of research and information. The packet will explain the differences between photo and proton. Explain every treatment and pros and cons. The research done on treatments. It is a lot to read but once you do it gives you a really good bases on what to asked and expect with tests, consultations, and treatments.

If someone ones specific information on UFHPTI and the web sites just click on my @ and send private message. I just reviewed many of the videos and one explain UFHPTI it gantries, treatments, photon and proton, and what to expect at UFHPTI. It is a state of Florida facility and all employees are state salaried. Patients come to UFHPT from other medical institutions referral and or self referrals.

I am told Loma Linda is just as advanced as UFHPTI. I also know the great reviews of Mayo Phoenix and Minnesota facilities as offer both proton, photon and sugery. UFHPTI only does proton radiation radiation treatments. Many many children come there and about the only sad thing I experienced there seeing so many children with cancer there. Proton radiation is preferred radiation choice for children with decades of life left, those with brain cancer, eye cancers, etc.

I cannot wait until Mayo Jacksonville builds it new cancer center which will have proton radiation options. To let you know what Mayo Jacksonville thinks of UFHPTI they hired 3 of their R/Os to set up their proton radiation program at new cancer center.