Starting Active Surveillance

I was taken off Active Surveillance a couple of months ago, about four and a half years after my diagnosis and staging as T2aN0M0, Gleason Score 3+3. A “low risk” genomic prostate score and a downtrend in three monthly PSA readings over the period were reassuring. But a slight increase in lesion dimensions and a PIRAD IV reading detected in a repeat mpMRI about 3 ½ years after my diagnosis, and a spike in the PSA, led to a fresh PSMA PET scan and a PET guided biopsy. The disease showed progression at a Gleason Score of 4+3 and staging of T3bN1M0. I am currently under neo adjuvant ADT.


I feel the choice of AS was a correct one and it was guided by second, third and fourth opinions. I used the Sloane Kettering nomograms for monitoring PSA doubling times during the AS period. The hope had been that some form of focal therapy or immunotherapy would become standard of care and I would be able to opt for that in place of radical therapy. But these developments take time.


For those starting out on AS now, I would offer the suggestion that constant discussions take place between patients and doctors to examine feasibility of getting new focal treatments as they become mainstream. The suitability of participating in clinical trials of new treatments can be discussed with doctors too.

My story just about parallels yours. I was diagnosed 3+3 in May 2022 with a PSA of 5.73. Two cores positive , one 65% and one 25%. I met with 3 doctors, an Oncologist, Radiation Oncologist and Urological Surgeon. They all told me the same thing. I was a candidate for AS, but based on the size of the tumor, they all to a person recommended I initiate treatment. The Oncologist also told me quoting "However, review of his MRI remarkable for a large 2.5 cm PI-RADS 5 lesion, which we discussed is suggestive of higher grade or higher volume disease present". She also told me that based on those factors, there was a good probability that I would need treatment eventually anyway. And the thought of multiple biopsies and then having treatment anyway didn't appeal to me.


So I opted for treatment. The positive thing with Gleason 3+3 is that all treatment options are available. I opted for stand alone radiation treatment. The cure rates for surgery vs radiation are statistically equal. No need for ADT which is big plus. I finished 28 treatments a few weeks with almost zero side effects. The Radiation Oncologist is confident that the treatment was curative. I just need to get blood tests every few months to monitor my PSA.

everyone is different. My Gleason was 6. 2 spots at 5%. With hi risk. AS was option. Dr felt low dose guided radiation was best. Just finished last treatment feeling ok. Moving forward all they do is watch PSA. I know others who did AS and in 2 years they needed removal. You need to feel confident with your Dr research then decide.