Deciding on treatment

Hey Bjroc,

glad to hear no side effects. when did you have the Tulsa and by whom?

There is no reason you cannot get a second opinion from another radiation oncologist. I’m not sure if you are at a center of excellence, but that might be the best place to go to get that second opinion.

I had seven weeks of IMRT and had absolutely no reaction to it at any time while it was going on. Five years later, I started to have incontinence problems, But until that I had no side effects from the radiation at all. Some people get fatigue, others get urinary issues requiring Flomax and infrequently something else.

Nov 2023 from Dr Scionti - Sarasota, FL. I still have some BPH but Tulsa took care of cancer lesions, all clear on MRI. Hopefully stays that way.

I absolutely do not want to discourage you from doing a treatment but one thing to keep in mind with ADT is that it takes a long time to wear off. I was on Orgovyx (the supposed "faster" one to wear off) for six months and it's now eight months later and my testosterone is still below normal and I have some side effects. My doctor told me it could be up to two years after stopping to recover as much as I'm going to from ADT, and that there's a 25% chance my testosterone will never recover beyond what it is now (200s, low normal is 300, normal is 350-750). Of course, I was told this after the fact. Ask your doctor what the odds of recovery for you are at 6 months, 1 year and 2 years after stopping and be sure to get a baseline testosterone test before starting.

Also, if you decide to do ADT, get a DEXA scan to see how your bones are as, besides the obvious effects of ADT/low testosterone on libido, sexual function and ability to reach orgasm (which you may or may not care about) it can also cause bone loss. I lost quite a lot of bone on my DEXA scan a couple months ago from what had been my baseline. Weight-bearing exercise is critical to help preserve bones and muscle.

Finally, SOME guys on ADT will get severe depression and try to brush it off thinking "oh, I just feel this way because I have cancer" but it's much more than that and I waited too long to see a psychiatrist about it. When I did, I was put on Bupriopon and it helped a lot immediately with the brain fog/ADHD and over 3-4 weeks later with depression so if you DO decide on ADT and suddenly feel extremely depressed get it taken care of sooner rather than later.

Good luck with your treatment whatever you decide.

You made a very good choice writing about your depression here, then seeking peer support and professional counselling. It's been inspiring watching your progress.

I also did Tulsa Pro. Mayo Rochester last July for 4+3. MRI remains clear and PSA is same as at 3 months. I had zero side effects.

ArterraAI uses artificial intelligence to view biopsy slides. It has a Quick turnaround (New York just approved their lab along with 49 other states except Calif.) In addition to commenting on aggressiveness it can guide intermediate Gleasons as to whether adding an ADT would help (34% YES, 66% NO) for Higher met risks 8-9-10 [ISUP 4,5] They can assist in recommending whether a 2nd ADT drug would be helpful.

MiraDx has a test [PROSTox] to determine if either or both EBERT (SBRT or IMRT) might put a person at higher risk of delayed term urinary tract symptoms. About 5% have late effect urinary tract sx overall. It is 15% for those at higher PROSTox risk. At least for SBRT eg Cyberknife lengthening the intervals (2 weeks,5 weeks) or lowering the fractions and extending out the time may further mitigate delayed effects' risks.

@brianjarvis Your experience (described in the last paragraph of your post, is similar to my experience. We differed in our treatments, I only had 5-fraction SBRT.
The 10% improvement in chance of remission @cobratk mentioned is new to me. I am 3 months in Orgovyx, my RO will advise if I can stop after 8 months or a year. Your comment that the extra 10% is well worth it -- it's encouraging. The only benefit my RO mentioned to me was that starving the cancer cells (they feed on testosterone or androgen) will help radiation kill the cancer cells. I wish I knew about the 10% from the beginning -- as it is, I spent the last months wondering if I still need it. I didn't question ADT the first two weeks pre-SBRT, during SBRT 1-1/2 weeks and the week after, but the next 2 months I was torn between stopping it sooner or waiting up to 8 months.
In my experience, this is proof positive that questions & answers among our support group members really. Helped me before, helped me today.

As a layman, I think the benefit of IMRT is that the organs at risk will be "better able to self-heal" after small dose radiation exposures over 28 treatment days. I had the 5-faction high dose SBRT; I noticed a little blood in my stool for a few days post-treatment; someone in this forum opined that my rectal area was healing/the veins were still sensitive, so some blood got picked by the bowel on the way out. Perhaps you will not experience this "little bleeding' post-IMRT -- the only side effect that got me worried a little bit.

All good points . What is yoru PSA ? At Gleason 8 you dont want to take that lightly What about operation, or maybe you have other comorbidities or just straight out your age preclude you from having a prostatectomy. They are effective as well as radiation. Surprisingly the outcomes are very very similar. Radiation and the operation are the two modalities that seem to be the most successful. I had the operation about five years back at PSA five. Gleason 3+4. My phone is he didn't buy them out but slowly climbed up to 0.14 ... This was a migration after three years of my operation. So two years ago I submitted myself 222 sessions of external beam radiation. The radiation oncologist said with the steep family history let's not wait till 0.2 and go after it now at 0.14 .THey did the Pelvic floor bed . I was too early for a PSMA -PET scan . It usually needs to be above 0.4 to get any sort of a target bounce . God Bless Sir ! James on Vancouver Island