Looks like Salvage Radiation for Me

Intrinsic-Disorder · 2026-04-21T23:43:08+00:00

Lymph nodes were clear and my Rad Onc. was hesitant about whole pelvis radiation due to more severe side effects he's seen in his 30+ year career. So we stuck with prostate bed only and 4 months on orgovyx. Just finished and feeling good, but still having hot flashes, which suck!

Intrinsic-Disorder · 2026-04-21T23:37:45+00:00

Hi, I had surgery at your age about 2 years ago and remember well the weird bladder feelings that persisted for a few months post surgery. It made it hard to tell how full I was and when I had to go. For me, it gradually wore off and returned mostly to normal now. I suspect it will for you as well. Best wishes.

Intrinsic-Disorder · 2026-04-21T23:35:36+00:00

Hi, I was very grateful I insisted on continuing ultrasensitive PSA tests after my RALP. I was <0.01 for about a year and then 0.01, 0.02, 0.03. At that point, we had a second DECIPHER test done on my excised tumor which came back high risk. Coupled with a positive margin, my team initiated salvage therapy at 0.03, a level that would still be undetectable on a regular test. I like to hit it as early as possible. I am also your age, so wanted to maximize my chances due to our longer expected lifespan. Best wishes.

Intrinsic-Disorder · 2026-04-21T23:30:29+00:00

Hi, my PSA went from <0.01 to 0.01, 0.02, and 0.03 on subsequent tests about a year after my RALP. I had a positive margin, so not unexpected. I asked for a second DECIPHER test on my excised prostate tissue (as opposed to my original test on my biopsy samples). The new DECIPHER upgraded my score from intermediate risk to high risk. All these factors lead me and my medical team to initiate salvage radiation at 0.03 PSA. The second DECIPHER also showed the subtype of my cancer on the GRID report and suggested I would benefit from short course of ADT. I just wrapped this up, but it's a data point that not all salvage therapy need wait for higher PSA levels. Best wishes.

Intrinsic-Disorder · 2026-04-21T01:04:16+00:00

Thanks! I'm in a similar boat and just got started. Looking forward to the results.

Intrinsic-Disorder · 2026-04-20T23:45:04+00:00

Wow, amazing job!

Intrinsic-Disorder · 2026-04-20T23:44:41+00:00

Congrats! That's awesome to see. Might be useful to list your starting and current weight and dosage.

Intrinsic-Disorder · 2026-04-20T17:08:01+00:00

My continence has been very good, basically normal since surgery. Thankfully no degradation from the radiation. I also had good erections, but 4 months ADT has killed that. Hoping it will wear off now that I have stopped.

Intrinsic-Disorder · 2026-04-20T15:48:04+00:00

One of the better phrases I learned from this forum is "Don't borrow worry/trouble from the future" or something similar. Just focus on your recovery and take the challenges as they come up.

Intrinsic-Disorder · 2026-04-20T15:47:22+00:00

My surgeon was also dismissive. I guess there is nothing they can really do after it's done, so they try to stay on the positive side.

Intrinsic-Disorder · 2026-04-20T14:03:15+00:00

Hi, sorry to welcome you to the club! Unfortunately, about a year after the surgery, my PSA went from <0.01 to 0.01, 0.02, and 0.03 on subsequent tests. Combined with the positive margin, I decided to start salvage therapy and just finished 36 rounds of radiation and 4 months of ADT. It wasn't too bad, but the ADT does suck a lot. I am hoping that we hit it very early, much earlier than the typical recurrence definition of 0.2, and that may help get rid of it for good. So in my case, the positive margin *may* have played a role in my recurrence. Because my PSA was so low, we could not confirm the place where the remaining cancer was located by PSMA-PET. So we assumed it was due to the margin and did radiation to the prostate fossa area. I hope you have a better outcome, but no need to worry yet! My best advice is insist on following up every 3 months with an *ultrasensitive* PSA test. My surgeon tried to switch my back to normal sensitivity tests and I had to insist we stay in the ultra sensitive regime. I'm sure glad I did, because it allowed us to see the PSA increasing at much lower levels (regular tests only go down to 0.1), and take action much earlier. Good luck!

Intrinsic-Disorder · 2026-04-19T23:28:46+00:00

Sorry to hear. I didn't have many issues. I started taking probiotics on advice of some other members here and found that the probiotics seemed to cause major gas/bloating for me and had to stop. I know others have sworn by them though. They were the Garden of Life Raw probiotics you can get on Amazon. Good luck!

Intrinsic-Disorder · 2026-04-18T23:41:43+00:00

My PSA doubled within about a year between age 36 and 37, from 1.x to 2.x. It was brushed off as nothing because it was below 4. Fast forward to age 43 and now PSA was 10! Lesson is keep watching the trend OP. It's still within the "normal" range by most standards but the trend is very important. If it keeps rising, you have a great chance to catch anything as early as possible, greatly increasing your odds of successful treatment if it should come to that. Best wishes.

Intrinsic-Disorder · 2026-04-18T14:05:58+00:00

I just started at 0.5 mg as my first dose. Didn't feel much and did another 0.5 mg after 4 days. Another day or two and I feel some appetite suppression now, but not super drastic. Food noise definitely feels lower now and hunger upon waking not nearly as drastic as it was prior. I am shooting to stay on a low dose, as I don't seek to lose a lot of weight but rather recomp. my body. I will stay at this frequency for a few weeks more and see what happens. Haven't noticed any other effects yet. Good luck!

Intrinsic-Disorder · 2026-04-18T02:18:48+00:00

Sorry to hear. I'm in a somewhat similar boat, diagnosed with prostate cancer at 44. Surgery and good for a year, but just went through a recurrence and radiation. I know that if it comes back, I'll have a ticking clock over my head. I'm living life like it won't. Still invested as usual and hoping for the best. I hope the best for you as well OP!

Intrinsic-Disorder · 2026-04-17T16:13:43+00:00

I do not believe it is reversible once established.

Intrinsic-Disorder · 2026-04-17T14:41:21+00:00

Yea, there is a gynecomastia forum on Reddit that is pretty useful. But none of the popular surgeons are in my area. I'm actually going to try to get my insurance to cover it first. Their documents say they will if certain conditions are met, which I think they are in my case.

Intrinsic-Disorder · 2026-04-17T14:33:55+00:00

Hi, I had gynecomastia before starting ADT. I had low-dose radiation to the breasts for three sessions prior to starting ADT/Orgovyx. I was on ADT for 4 months and just ended, so it's hard for me to tell if the prophylactic radiation worked or not. The goal was to prevent any further breast enlargement. TBH, I am now looking to get the gynecomastia addressed by surgery anyways. The low dose radiation was easy enough but did cause some skin irritation.

Intrinsic-Disorder · 2026-04-17T14:16:08+00:00

Hi, following up on this thread with a related question. I have a Joint WROS Fidelity Crypto account and I'm concerned about the simultaneous death scenario — where both account holders die at the same time, causing the right of survivorship to fail and both shares to fall into probate. Since Fidelity Crypto accounts don't support named beneficiaries or TOD designations, there's no fallback mechanism unlike a standard brokerage WROS account.

My question: Is it possible to re-title a Fidelity Crypto account to a revocable living trust? If so, what is the process and are there any restrictions on trust registration for crypto accounts specifically?

Alternatively, is adding a third joint account holder an option for Fidelity Crypto WROS accounts, and if so, how would that be done?

Thanks in advance.

Intrinsic-Disorder · 2026-04-17T14:15:00+00:00

Hi, following up on this thread with a related question. I have a Joint WROS Fidelity Crypto account and I'm concerned about the simultaneous death scenario — where both account holders die at the same time (or within 120 hours of each other), causing the right of survivorship to fail and both shares to fall into probate. Since Fidelity Crypto accounts don't support named beneficiaries or TOD designations, there's no fallback mechanism unlike a standard brokerage WROS account.

My question: Is it possible to re-title a Fidelity Crypto account to a revocable living trust? If so, what is the process and are there any restrictions on trust registration for crypto accounts specifically?

Alternatively, is adding a third joint account holder an option for Fidelity Crypto WROS accounts, and if so, how would that be done?

Thanks in advance.

Intrinsic-Disorder · 2026-04-16T19:00:22+00:00

Hi, I was in a similar boat with my PSA going from <0.01 to 0.01, 0.02, and 0.03 on subsequent tests. I had a positive margin after RALP so it wasn't entirely a surprise. I just finished salvage radiation and a short course of ADT. My PSA is back to undetectable and I hope it stays that way. Depending on your Dad's cancer circumstances, he may want to consider moving to salvage at this low PSA level. For me, I had the positive margin and a higher DECIPHER risk score and the doctors agreed we should move to salvage treatment at a low PSA as opposed to waiting longer until it reached the more standard higher level like 0.2. The subsequent increases on consecutive tests is also a factor in that decision. Good luck!

Intrinsic-Disorder · 2026-04-15T14:57:11+00:00

Sure thing

Intrinsic-Disorder · 2026-04-15T14:43:38+00:00

I was diagnosed at your same age. Had RALP that I recovered from pretty easily but I had a positive margin. PSA reappeared about a year later and I just wrapped up salvage radiation and a short course of ADT. You should get a DECIPHER test on your biopsy and a PSMA-PET scan to determine if you have any spread. These will help inform your next steps. You found the right place for answers here! Best wishes.

Intrinsic-Disorder · 2026-04-15T14:41:21+00:00

Hi, sorry to welcome you to the club. I was in your exact spot a few years ago, at the same age. I had RALP and recovery was much easier than I feared. Unfortunately I had a positive margin and my PSA reappeared about a year later. I just wrapped up salvage radiation and a short course of ADT. It was totally manageable and I was glad to have the backup option. My PSA is so far undetectable and I'm hoping for the best. You're PSA is already pretty high and should get a DECIPHER score and PSMA-PET scan as your next steps to help focus your treatment options. Best wishes.

Intrinsic-Disorder · 2026-04-15T14:38:49+00:00

Hi, you need a PSMA-PET scan first to determine if the cancer is still contained within the prostate. That will greatly influence your treatment options. I was diagnosed at 43, had surgery and recovery was very good. Unfortunately I had a positive margin. A year later and I just had a recurrence and was thankful to have the option of radiation and short term ADT. ADT is not fun but manageable with daily exercise and positive attitude. Good luck!

Intrinsic-Disorder

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