Where are all the people on Active Surveillance (AS)?

My husband had "failed" AS because his urologist was NOT performing biopsy every 2 years and I just want to warn everybody not to shy from this procedure.

My husband's PSA was going up and down from about 3 to above 4 , than to 5.6 than back to 4. One MRI lesions shrunk in size in that period and small new one appeared on the left side this year. The first genetic test that was done on the first biopsy several years back was indicating LOW chance of aggressive cancer in 30 years, and so forth and so forth. So, in 7 years no more biopsies ware done and when it was finally performed again this year it showed 4+3 unfavorable with cribriform and IDC ! He had RP that showed that he actually had 4+5 😰. Thanks god we decided to have RP instead of RT since IDC and cribriform can be resilient to radiation therapy. His post op recovery was VERY fast, he is just 9 weeks post op and his incontinence is already almost non existent and ED is on nice recovery path and he just turned 70.

Bottom line - do not rely only on MRI and PSA levels alone ! I would strongly suggest that once you have 3+3 found you INSIST on having a biopsy every 2 years - your gleason can change as well as your Decipher as time passe and not always in a "slow" manner.

Wishing you all very successful AS and may you never come in our situation of regretting not having a biopsy 🍀🍀🍀. If we had known what was the correct and suggested protocol for AS (having biopsy every 2 years if there is 3+3 and visible lesion ), we would have chosen to proceed with a treatment at first 3+4 event.

I chose to treat my 3+4 gleason and 10.1 psa right away. There was no doctor that could accurately predict my growth even with a Decipher test, even with multiple opinions from centers of excellence doctors. For me, AS was not something I was comfortable with. If I was going through it again, I would have taken the PSE test with its higher level of accuracy before I took an MRI or a biopsy. I was treated with the Mridian radiation machine, which I would do again.

I started AS in 2021 when biopsy showed Gleason 3+4 in identified lesion per MRI with low risk Oncotype Score. But AS does not mean monitoring PSA without a biopsy; in fact a decision whether or not AS is a safe choice is dependent on the biopsy results along with genetic testing of the specimen (Decipher or Oncotype score).

This summer my PSA jumped from previous 8.5 ng/ml to 15.1 with unchanged MRI but Gleason 4+5 and bilateral disease on PSMA. Just finished high-dose SBRT and started 12-18 months ADT.

I do not regret the 4 years of AS, even with the power of the retrospectoscope looking back. I had 4 years without the side effects of RT or RP and the confidence in the scientific literature that reports the chance of long term disease control is unchanged by that choice.