Finished 28 Proton Therapies

I am not a doctor. “Not think a spacer is necesssary” is a strange comment. Why do they say that? Even the world’s best can make a mistake and rectal bleeding or damage is not something you recover from easily or sometimes at all. Not good either. A spacer seems to me to be essential. If they have a better answer than ‘not necessary’ I’d love to hear it.

We just had a consultation for my husband in Loma Linda and they stopped using the spacer as they figured out that it causes colon bleeding in some patients.

New York Proton Center have 5 Fraction Proton with MRI Guidance.
Most proton centers use “volumetric” beams that deliver a fixed quantity of energy to the entire tumor. But the pencil beam scanners at the New York Proton Center deliver “intensity-modulated proton therapy,” or IMPT.

Widely considered the most advanced form of proton therapy, IMPT can target different parts of the tumor with different radiation dose levels to most precisely and effectively treat the tumor. That’s particularly valuable when treating the most complicated tumors, such as those residing in brain or spine, head and neck, lungs and chest, and abdomen.

Thanks for the reply... I had my Pylarify pet scan on Dec. 19th and it showed no spread. to nodes, seminal vesicles or skeletal so that was positive. I had 5 positive cores all on one side, all 4+4.

Meeting with the surgeon tomorrow (who does lots of Robotic surgeries) so I'll know then how booked out he is.

I live in Northern Wisconsin but winter in Scottsdale 6 months of the year. I have also contacted Mayo in Scottsdale but they haven't received my medical records yet. Once they do, I'll be contacted if they will accept me into their system for treatment. I think it would be beneficial to go thru Mayo as they are cutting edge whether Proton or Robotic surgery... I also live 5 hours from Mayo in Rochester should down the line I need further treatments as well. What have you heard on success rates for Proton? Similar to surgery I think?
Thanks, Lee

I am currently 71 years old to be 72 in April 2024. with the Gleason score 8 and above I would definitely go for proton beam therapy (with the Hydro-gel space oar) especially because of the amount of cores that you have are positive. Do not go on active surveillance you're taking a big risk. I only had one CORE positive with a Gleason score of 3+4 = 7 and my urologist said to me let's nip this in the bud. jmho- good luck

@marlow2
My PCP at Mayo Jacksonville (who does a lot of research) stated he was seeing trials of the drinking of water. The research is trying to determine if this pre treatment required is worth the trouble with drinking water to move bladder away. So your post saying your husband is in a trial for just that is confirming my PCP is just outstanding and confirms his research.

Some post have been reporting that the high dose 5 day treatments were same side affects for the 30 dose and higher treatments. My PCP also discussed this with me showing the reserach he is finding is showing the high dose is showing increase in side affects and complications over the low dose long term They are doing studies and trials on this also.

The high dose 5 day is fairly new versus the decades of doing the low dose long term thus the research now will help determine which is better not only for curing the cancer but the amount of side affects and seriousness of them for better information patients. Again one improvement of 5 dose versus 30+ is the time required and I think a lot of men will not ignore and delay treatmens if they can get the high dose and done in 5 treatments. What I was told my oncologist/radiologist was that the radiation does not kill the cancer it damages the cells and prostrate cancer cells can't repair themselves like normal cells of prostrate. Do the cancer cells after treatments can't reproduce and grow so die off. That is why so important to treat entire prostrate to make sure all areas are treated and they don't miss a minute cancer. This again is my oncologist/radiologist at both UFPTI and Mayo Clinic not my personal opinion.

I have also seen the precise beam treatments versus treating entire prostrate and margins. What my UFPTI oncologist/radiologist said about this is there is no gurantee that any CT or MRI nor biopsies will not miss a small undetectable spot that does have cancer and will continue to be there if not treated. Thus UFPTI treats the entire prostrate to prevent this and until more research (UFPTI received a 25 million dollar federal grant to do research and trials on proton verus photon radiation treatments) and those a lot of research is being done.

Hope your husband feels better. I have never had shingles but am told is very painful. The Decipher test should really help you on better diagnoses of the risk level of his cancer.

Thanks for all the comments. My husband found out yesterday that the trial that he volunteered to do was set for him. 50% would have no water administered during radiation and 50% would have water administered. He is in the water category. I'm actually relieved because they don't know yet how patients will do without water which is the normal procedure. He also has an appointment for the Decipher test on 3-7-24. His paceror surgery was moved up to 2-29-24 and CT and MRI scans on 3-1-24. I hope that he gets relief from the shingles that he has had for 3 weeks. The bumps are drying up but he is still in a lot of pain.

@marlow2
This is standard procedure at UFPTI. When you do simulation (this procedure sets up a specialized bed for each patient and the parameters techs will use during actual treatments) e there they have you drink water 30 minutes prior to procedure. Then do low dose xray to monitor your bladder position with water and adjust drinking more up or down.

This is done to help move bladder away from prostrate and lesson the amount of radiation that bladder receives. They also look at Space/Oar to see it has moved the rectum down and away. If not they will use a baloon to do that before procedures.

Everyone is different and how they absorb water and time needed to do it, along with size of bladder ect. My plan revealed I needed to drink 12 oz of water 30 minutes prior to treatments.

Thus I would urinate prior to drinking the water and after treatment urinate again regardless of urged to do so as had a 45 minute drive home. This work out for me without any issues with urnination urges from drinking all the water and the increases in urnination and urges when doing radiation treatments.