Gleason 8 diagnosis at 51: Likely opting for surgery
I just got diagnosed with a Gleason 8 cancer and I am only 51. I think I will opt for surgery, but not 100% sure.
I would like to share my results and see if anyone is/was in a similar situation and could share their experience:
A total of 7 or 8 (with second opinion) positive cores out of 14.
3 are low volume gleason 6, 1 high volume discontinuous gleason 6.
One high volume discontinuous 3+4 with only 5% pattern 4
One high volume 4+3 with 70% pattern 4
Two low volume (10%) Gleason 8
Negative mpMRI
Negative psma
Decipher 0.2, low risk
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My hubby was tested 2015, at age 50, PSA was 5.8. We wanted surveillance and it started but was not "active enough", doctor relied mostly on PSA trend and only 3 MRIs done and single biopsy in 2019 (before this second last one in February). Correct protocol is MRI and biopsy ever 1 to 3 years, so... IMHO if one decides to do surveillance it is of utmost importance to find a doctor that will follow this correct protocol. Unfortunately we missed that window of 3+4 without ductal involvement and now from very low risk category we jumped in category of intermediate/high : ((( with 1 to 2% chance of metastasis (God forbid). *sighhhhhhh
I’m glad we’re on the same page, bud…this is why I am always stressing the need to find younger practitioners in the urology field. Not kids right out of residency, but not an old man like me!
Many 60’ish year old general practitioners (not all) who should be at the forefront of PC cancer screening are like deer in the headlights, not knowing that the PSA is just as important as glucose and cholesterol when they order a blood panel. They still have the “do I or don’t I?” mindset forged during that short but impactful interval of over treatment fear mongering. Thanks for your post! Best,
Phil
With your Gleason 8, was that a 4+4, 3+5, or a 5+3?
Any cribriform pattern, PNI, SVI, ECE, or other concerns?
When you mention PSMA being negative, what does that mean - nothing seen even in the prostate?
What were your genetic (germline) test results?
What are the many factors you’re using in deciding on treatment type?
I was 3+5 which my doctor thought was odd, and was likely a 3+4. After they took the prostate out, the pathology showed it was 4+5, which was … not exciting. Also had ECE, SVI, and one lymph node with signs of it as well. None of that was on the PSMA. It can’t see below a certain threshold, though that threshold is quite small. No genetic issues, just got unlucky. adjuvant ADT and radiation coming soon.
You have choices....
Surgery is certainly one of them...you could input your clinical data into MSKCC's nomogram to get additional information on probability (not certainty) of outcomes - https://www.mskcc.org/nomograms/prostate/pre_op
If you elect surgery, then experience is a factor. You should discuss with your medical team about nerve sparing but also guidance to them about what to do if once they start, they see PCa in the nerve bundles, what then, take them out, stop, close up, then do radiation, ADT...?
As others have said, surgery has likely a more definitive answer with the pathology report on the whole gland vice a biopsy. Still, even that is not certainty. My surgeon was "positive" based on my pathology report and his surgery notes that I wouldn't have any future issues, aka, cured...meanwhile MSKCC's nomogram said 30% chance I wasn't...history says who was right...!
There is no "right" answer from my experience...there are choices, each has its outcomes and side effects. I remember my radiologist having me acknowledge that SRT could cause ED ("frying the nerves"), it didn't. As I've said before on this forum, keep in mind statistics, Bell Curve, Standard Deviations, Averages, Means, Medians...In my case, likely my outcomes and side effects are several standard deviations to the left - I never lost my libido while on ADT, the day my nurse pulled out the catheter after surgery, no incontinence (and I didn't do Kegels!), not bragging but even while on ADT, I could achieve erections, now if my wife....
You can do radiation, I have a friend who elected to do that, PSA has dropped from 11 to 1.3 in the first six months.
You can also elect to do doublet or triplet therapy, though that's generally consider for metastatic PCa - https://www.mskcc.org/nomograms/prostate/pre_op. While the clinical data you present indicates localized, in higher risk situations, micro-metastatic PCa too small to be detected by even the more sensitive imaging today is a possibility.
You can look through the NCCN Guidelines for guidance and discussion with your medical team - https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1459
I was 57 when diagnosed in 2014, choices were binary, elected surgery, "successful," until it wasn't. Still, 11 years later here I am, living large.
I did not lose sexual or urinary function from my surgery though the former took around 12 months. Within three months life had returned to normal physically, I was going to the gym, playing basketball and pickleball, taking vacations, skiing with friends, Yes, sex will be different, dry orgasms, likely greater physical and mental stimulation required to achieve and sustain erections, my Penile Rehabilitation Therapy (PRT) was "simple," 5mg daily Cialis and use it (masturbation), Others have more complex PRT such as injections, implants. I think UCSF has one of the better programs (I attached it).
I think the only "right" answer in your situation given the clinical data is do something, do nothing is not a right choice.
Good luck in your decision.
Kevin
UCSF PRT (UCSF-PRT.pdf)