Initial treatment decision sharing

[climb4blue]

I believe I have started treatment at either AJCC Stage I (NCCN Low risk) or AJCC Stage IIB (NCCN Fav risk) prostate cancer, dependent on which pathology report for grade group was used as the basis for clinical diagnosis, and dependent upon the prostate biopsy not missing the worst tumor. Both reports confirmed presence of PNI. I had a PSA doubling time of 14.2 months. Based on the last pre-treatment PSA test on Oct 1, 2021 of 8.01 ng/mL, my PSA at the time I began any form of initial treatment was calculated to be 8.64 ng/mL.

I elected to do the following as my initial treatment:

Orogvyx (LHRH antagonist) for 4 months, and at day 64, begin SBRT of 38Gy/4fr via a Cyberknife linac at UCSF. I also added two daily doses of 30 mg Propranolol, starting 30 days prior to SBRT. I begin SBRT treatment on Feb 22, 2022.

Orgovyx side effects have been limited to frequent hot flushes and loss of libido. To offset long-term side-effects of ADT, I include a daily regimen of lifting weights and using a Bathmate pump then applying a Jelqing balm. Also, 5 mg Tadalafil daily.

My Orgovyx response (T mg/dL, PSA ng/mL):

Oct 15, 2021: 535, 8.01 (actual test results)

Dec 20, 2021: 535, 8.65 (estimated biometrics at Orgovyx start date)

Jan 7, 2022: 7.87, 4.18 (actual test results)

Jan 28, 2022: <2.5, 2.41 (actual test results)

Jan 31, 2022: (gold seed fiducial placements in prostate - further testing suspended)

I am happy to answer any questions or concerns in any way that I can so that other new members can gain insight towards making their own treatment decisions.

…Regards

[Tall_Allen]

Good luck with the SBRT.

[NYC_talker in reply to Tall_Allen]

May I ask why you're taking Orgovyx, having low risk or favorable intermediate risk PCa with no ECE or other issues? Sorry in advance if I missed something obvious. Thanks. (Replying to TA's response because I'd like his thoughts on it as well.)

[climb4blue in reply to NYC_talker]

The reason for Orgovyx is PNI. After the initial aversion to treatment because of side effect, I began to realize that every time a man is re-treated, the side effects only get worse. This led me to approach my initial treatment as aggressive as I could tolerate, so that I can move on and move forward, knowing I gave it all I could right up front.

This journey of figuring out where I really was clinically, and the risks of clinical misdiagnosis was in large part the Health Unlocked community and Tall Allen’s prostatecancer.news research.

Here were the resources I relied upon to elect ADT:

1. I spoke with my first pathologist specializes in PNI and researched its behavior extensively for over a decade (Dr Ayala). He considered PNI a more of an adverse pathology than the 3+4 Gleason pattern itself.

2. I spoke with my second pathologist (Dr Epstein) said that initial treatment should include hormone therapy if I choose to do radiation over prostatectomy. John Hopkins prescribes ADT to all risk categories if they have PNI. All aside, I decided against a prostatectomy because of the risk of cancer being near the capsule, even at a microscopic level, due to PNI.

3. A very well-done retrospective study by Peng et.al., showed a statistically significant recurrence risk for Low-risk patients with PNI who did not receive ADT. In this Peng study, ADT was administered to Low-Risk men if minor factors were present such as elevated PSA velocity, and/or PNI which I also fall into this category. Anyhow, I read this study carefully, a few times, and Low risk men with PNI had recurrence risk more comparable to Intermediate risk men, unless ADT was used. Moreover, as one collective cohort, PNI presence was shown to result in adverse pathology than those without PNI. Although this study noted that Intermediate men with PNI seemed to be just as prone to recurrence as Intermediate men without PNI, the study surmised that it is not as if Intermediate men were somehow immune to the effects of PNI but that the more aggressive treatment modalities offered to Intermediate men may mitigate the additional risks to adverse pathology due to them having PNI.

4. In this Peng retrospective study, an observation was that there is a much LOWER likelihood of having PNI in Low-risk men than Intermediate and High-risk men. I didn’t take this to mean a man cannot be Low-risk if he has PNI, just less likely to be Low-risk. So, I considered other studies addressing clinical misdiagnosis. These studies concluded the odds of missing a higher-grade tumor is over 30% on the first biopsy. One study included fusion guided biopsies, and due to misregistration between the TRUS image and MRI, they can still miss the target a significant amount of time. In fact, Dr Epstein’s greater concern over PNI was a confirmatory biopsy if I was going to choose active surveillance. In my specific situation, my PSA was aggressively increasing (virtually doubling in a year), my PRAD4 lesion (2 radiology opinions) was targeted but missed (IMHO), yet the concurrent template biopsy caught something in the same area (3+4). I took this cacophony of information and realized that in just a few short months I will have categorically migrated to NCCN unfavorable risk (3+4 and PSA>10) but might actually be undertreated altogether if the worst tumor in my prostate was missed during the one biopsy.

So, there you have it. My reasons for choosing ADT therapy as part of my initial treatment.

[Tall_Allen in reply to climb4blue]

Remarkably well thought out!

[NYC_talker in reply to climb4blue]

Thank you for the very thorough explanation. I think a lot of people would be wondering what I was, so I'm glad you took the time to explain it for many weighing treatment decisions.

[CarverD]

Outstanding answer! Hope all is going well and proceeding as planned with your SBRT.