I decided to have SBRT in 5 sessions over 5 days daily. I would like to hear from anyone that went this route. I have a gleason score of 7 and psa of 8.1. My biopsy showed two lession…one 4+3 , positive and the other 3+4 was negative. I will get the barrier gel next week in Montgomery, Al at the Alabama Cancer center. I’ve ask if I will need all 5 sessions but waiting on a response from my Dr. I’m nervous and emotional about it all. Any insight would be greatly appreciated.
John
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ArmyCW5Retired
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Did it four years ago with near identical stats as yours. No side effects and so far so good. My only issue was keeping the bladder full prior to radiation could be challenging. Yes, you need all five.
I went through the same procedure over the Christmas holidays 12/22 at Mayo, Rochester. Our diagnoses are similar. Here are a few tips.
I asked for mild sedation for the placement of the fiducials and Spaceoar. It was a breeze. But I've heard many complain of pain who have not had enough sedation. I don't know what the standard of care is at your hospital. It's probably worth while to ask if it is available to you.
For me, the first three treatments were pretty easy. Like @M Moops, I had trouble holding the 16 oz of water for the required time. If you have urgency now and retention issues, you might consider buying a penis clamp.
It was after the third treatment that I began having problems. I had serious burning pain of the urethra. It's not uncommon. It felt like an untreated case of urinary infection. And, the treatment is the same. Buy a packet of AZO and a bottle of ibuprofen. Take as directed. You will know if you need it. Both are commonly available over the counter. Get this in advance. It took a couple of days to begin to relieve the pain and urgency. It's cheap insurance. If I had to do it over again I would start taking both before the first treatment.
Five treatments are the standard of care for SBRT and you should do them all. I doubt any doctor would do fewer. Three weeks after treatment my PSA dropped from 13.8 to 6.2. My next appointment isn't for a couple of months so I don't know what my PSA nadir will be. For me, the largest side effect has been fatigue. My RO says that can last for six months. Staying active helps.
You didn't say if you are going to be treated with ADT. The side effects from that are much more challenging for most people than the Proton beam SBRT. It is also part of the standard of care. I elected not to do it because I have coronary issues that can be made worse by the side effects of ADT.
There are no published studies of which I am aware that compare outcomes with PBSBRT with and without ADT. (I'm a professional researcher.) There is a current study at Mayo Phoenix ongoing now at the 10 year mark. But the results are not yet published. However, the initial results at 10 years are there is no statistically significant difference in outcomes. Few people make the same decision I did. That's where I would advise you to focus your attention.
There is a wide variance in reactions to ADT. In most cases, it brings PSA down much faster than sbrt alone and to virtually undetectable levels. Your mileage may vary. My Pca was local so far as we could tell. If there had been clear evidence of metastasis, I might have elected to undergo Leuprolide ADT. A six month course was advised in my case.
Good luck and my best wishes for your success. Welcome to the brotherhood of the beam.
Thank you so much for the insight and the recommendation. I will have the barrier gel next week. Still nervous about it all. 5 days straight radiation and it will be all done hopefully with great results. Thanks again!
My results were almost a mirror of your diagnosis. I had five sessions over 2 week period. You need to receive the full amount of radiation. My PSA was 11.2 my doctor put me on Orgovyx May 13,2023. Have had 2 PSA readings since that my doctor has been pleased with. Only side effect has been hot flashes.
Mind was June 2,6,& 15. Finished up July 8 & 15 of 2022. So far my PSA readings have been excellent. I think your team know what they are doing. Best of luck to you.
First I would like to thank you for your service. Take a deep breath stay positive, if you can many support group out there join one very helpful. May God Bless all my brothers who are dealing with this disease. Keep notes
We share a similar diagnosis, 2 lesions, 3+4 and 4+3. I'm a little younger than you but also was being pushed strongly toward surgery. I have recently settled on moving ahead with SBRT with my appointment for SpaceOAR now on the books. Feedback from this forum and reading some trial outcomes helped me make this decision for the RT at least, but the SpaceOAR is definitely divisive. While curing this is definitely a priority, I'm still hoping for some years ahead of me and quality of life is definitely a priority. I'm pending for the POTEN-C trial regarding not doing ADT. Interestingly, I've not been told it is a choice for me outside the trial (where I don't get to choose if I do or don't get it, since it is randomized). I hope you post back and let us know how things go.
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