Rapid Reccurance and Short Doubling Time after RARP

Cooper, one thing you might look at are alternative PET scans. < 10% of prostate cancers return false negatives. At 1.0, the PSMA PET scan should be picking things up. You might be one of the guys where your METS are being missed. John- Hopkins developed the PSMA PET scan and developed alternative to those cases. Check out this link, you may find it helpful.
https://www.hopkinsmedicine.org/news/articles/2022/11/finding-metastatic-prostate-cancer-that-doesnt-make-psma

Steve, thank you so much for sending me that article! I knew nothing about FAP, and you are educating me by the minute. Please keep me apprised of the development and treatment on your end and I will do the same. I do note that Lupron seemed to be effective for me during the six month period I was on it but when my testosterone came back, so did the cancer… .

Exactly, Climber! When I see the strides made in just the last 5 years since my diagnosis I am more than hopeful - in fact feel it a certainty - that 5 yrs from now we will have even better treatments to increase longevity by YEARS, not just a few months. Hang in there guys and just do what you gotta do!

Hello Steve, I also had a persistent PSA after having my prostate removed in March of 2021 (PSA was 11.6 prior to surgery) Gleason scores 4+4=8. My first PSA test post surgery was 0.37 on 05/15/21, then 07/15/2021 PSA was 0.56, then on 09/09/2021 PSA was 0.69. On 09/27/2021 I started 34 rounds of salvage radiation without ADT. After that 12/10/2021 PSA 1.29. Yes PSA almost doubled during radiation treatment...
Then I had my first PET/CT scan and nothing was found. I then switched medical providers and got myself an Urological Oncologist. The next 10 months I was on active surveillance watching my PSA climb with every PSA test. A 12/16/2022 PET/CT scan found a metastasis in a lymph node in my chest. I then saw a second Urological Oncologist that was able to get me into a 6 month clinical trial, the MetaCure Trial. That consisted on two daily drugs Orgovyx and Erleada along with radiation to the affected lymph node. My PSA was up to 12.12 before starting the trial and at < 0.01 PSA at the end of the trial and I was taken off all drugs. But that did not last long within three months (12/11/23) PSA was showing 0.02, then three months later (3/11/24) PSA was 1.02, 6/10/24 PSA 6.67, and on 7/22/24 PSA was up to 10.58. On 08/02/2024 I started Orgovyx along with Xtandi (both daily oral drugs). My PSA dropped back down to undetectable < 0.01 in 12 weeks.
All of this was over the course of about 3 1/2 years I have had at least 5 PSMA PET/CT scans and only one found the single metastasis in my chest. So I guess to answer your question YES, I have had rapid doubling times. I have an aggressive form of Prostate cancer much like you. That means that we need to get some aggressive treatments as well. We need to be our own advocates for the best care/treatments available. Forums like this are a great way to learn about what treatments are available and what questions we should be asking out Medical team. Over my three plus years journey I have changed Medical groups three times to find the best care for myself.
I wish you the very best with your care and treatments. Please feel free to contact me directly if you have any questions that I might be able to help with. You are not alone.

I was 4+3=7, tertiary 5. My PSA was more than doubling every three months after coming off two years of hormone therapy and salvage radiation treatment. Obviously, I was very concerned. Dr. Kwon at the mayo clinic told me that he was much more focused on what the PET scan showed, and where it lit up, versus the PSA doubling time. Maybe that was being overly optimistic, but wanted to share.

You bring up a very good point that I'll be discussing with my Mayo urologist & radiation oncologist when I see them in a couple of weeks. There seems to be this standard protocol of doing salvage radiation when reoccurance happens. For those with really bad cancer numbers (Gleason, PSADT, short time to BCR, cribriform, IDC, etc.) and with PSA rising quickly the most likely source of the PSA is micrometastases, or even matastisis, not residual PC in the pelvic bed. So why do salvage radiation and expose the patient to the impactful consequences, including permanent & negative impacts to incontinence that hasn't fully resolved from surgery? You seem to be a perfect example of that; 34 rounds of radiation and the PSA continued to increase. That was wasted time, when systemic treatment could have been implemented. This is not to mention the toll all the radiation had on your body For me, I'm going to push that they do ADT first or at least ADT with radiation.

It’s too bad you didn’t find yourself a Genito urinary oncologist. After salvage radiation, they would Almost definitely have put you on ADT Because of the Gleason eight. That would’ve prevented your cancer from growing as it did for years

A urinary oncologist is only good for surgery and minor treatment after that, They do not specialize in prostate cancer specifically. People need that GU oncologist, who knows about all the steps you need to treat prostate cancer that is aggressive

Three years ago, at age 69, I had a RP with G9 pathology, node negative, but seminal vesicle invasion. Had PSA of 0.016 6 weeks post op. Three months later my PSA had climbed to 0.37. A PSMA PET revealed a solitary T8 met. After extensive consultations I opted for SBRT to T8. Another 3 months later my PSA had rapidly doubled to 4.6. Repeat PSMA PET revealed a positive pelvic node, but fortunately the T8 met appeared killed.

I now needed a medical oncologist. After an extensive search I elected aggressive treatment at Johns Hopkins. Immediately began triple therapy with Lupron, Darolutamide and Docetaxel. My PSA became undetectable after the second chemo treatment. My Darolutamide was discontinued after 3 months and my Lupron after a year. My testosterone has failed to return to normal but my PSA is undetectable even on ultra sensitive PSA test. My MO sent me to an endocrinologist to begin TRT. My MO said my aggressive clones have been killed and there is a possibility I am cured and, if not, my cancer could return but would be indolent and controllable. He and his team have extensive experience treating oligo metastatic disease aggressively over the last decade.

As a retired physician it made sense to me to to hit the cancer hard when the spread was limited. I was pleasantly surprised that he believes in limiting ADT and men regaining testosterone, either naturally or with supplements. This is aggressive and not currently SOC. I didn't want SOC; I wanted a chance to eradicate the cancer.

Doc, thank you for that account of journey. I'm very happy for your outcome! I note with interest that you didn't do salvage radiation. Reading about so many peoples journey, it appears that "SOC" is just that, a standard applied to all, regardless of an individuals details. That is to say, all RARP patients who experience BCR and no MET is identified, will get salvage radiation with ADT, regardless if thier cancer is G9 or G7. I like that you treated your advanced disease with an aggressive path. Since we know the G9's are likely to become castration resistant and chemotherapy resistant, it makes since to hit the cancer with everything you've got before this happens. It gives me discussion material when I meet with my team in a couple of weeks. Thank you.

My mistake; I omitted my pelvic radiation. After my triple therapy, while still on Lupron, I received 37 radiation treatments to my pelvis, including boost to my prostate bed and the location of the one positive node. My MO at Hopkins said to have maximal beneficial effect the radiation needed to be started 8-12 post chemo.