Some of this info is in my first post, but I am repeating what i think is relevant.
In March 2020, Dx based on CT and bone scan and TRUS biopsy of GL 7 (4+3), T2N1M). The CT scan showed an enlarged right common iliac node (1 cm). Prostate was 5.5x5.3x5.8cm. In April 2020, PSMA PET scan showed PSMA avid right common iliac (SUV Max .4, PSMA score1) as well as LNs in the mesorectal space, left obturator fossa and a tiny right external iliac LN. Conclusion: High PSMA avid regional and extra regional lymph node metastasis (molecular imaging stage M1a. I have asked why this is classified as M1a and the RO says that the staging is irrelevant as I am being treated as metastatic and I cant get a clarification on the M1a classification without the oncologist supporting the request.
In July 2020, I was told that the mesorectal nodes were tiny and that ADT should take care of them (I have been on Lupron and Erleada since April 2020) and then the remaining nodes would be radiated. In November 2020, i was ready to embark on RT (EBRT to the pelvic LNs and prostate). After being told that everything had shrunk nicely and LNs were not visible on pre RT planning CT, the treatment options were downgraded - radiate the prostate only (6 x 6GY. Using MR-Linac) or a less than optimal dose to the prostate and pelvic bed (due to my anatomy and the absence of a fat pad to protect OARs). I opted for radiation of the prostate only and that was completed on December 31, 2020.
In March 2021, assuming I was M0, was curable but had no RT possible to LNs, I opted to participate in the SABR COMET 10 trial but was deemed ineligible because there was no evidence of metastatic LNs on the follow-up CT scan and they cant radiate what they cant see. The opinion on the follow-up CT Scan was: complete resolution of the pelvic lymphadenopathy. Currently no residual, measurable, LNs in the pelvis. No evidence of metastasis in the abdomen or pelvis.
I am wondering whether having the lymph nodes shrunk, there is no value in RT to the normal size LNs.
RO says “wait and see”. When PSA goes back to 0.2 or 0.3, repeat PSMA PET scan and determine next steps based on the results. It’s difficult to sit back and enjoy life while the possibility of a cure becomes less likely. Does anyone have any thoughts or suggestions on alternate possibilities? I was looking into surgery but now I’m not sure whether it should be surgery on the prostate gland, LNs or both. Ive read a couple of publications that refer to patients on Erleada having RPs where necrotic tissue was found in place of the PG and LN dissection was bypassed as a result.
At minimum, I want to target the senescent cells. Any suggestions or information is very welcome. I am going to request testing for Chromogranin-A to monitor transformation of the cancer into NE variant. I am participating in a gene mapping study and hope that will inform decisions on future actions. I will share results and recommendations in hope that it may benefit someone, myself included.
Is there anything else that I could or should be doing?
Thank you all again for your valuable input.
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