Active Surveillance advice please

Hi Keith.

My view is, why fix something that isn't broken?

AS is being used more often

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

You appear to have low grade, low volume prostate cancer. If it's well contained within the prostate, I would have AS

My only caveats would be, ensure that you have follow up PSA tests, MRI scans and if necessary follow up biopsies.

I believe that only about 30% of men who chose AS, have disease progression and  later need radical treatment. They seem good odds to me. Unfortunately I was in the 30% who's AS failed, and I ended up having surgery but that doesn't alter my opinion.

I must also advise you that AS needs you to have the mindset to cope with knowing that you have the disease,  but being content that you are safely being monitored.

Have you been prescribed anything for your nocturia?

Best of luck mate and nice to meet you.

Edited by member 18 Apr 2024 at 22:42  | Reason: Additional text

I was prescribed Tamulosin for about 7 years prior to diagnosis. It seemed to help with nocturia.

Hi Keith, I had BPH and none of the medications helped so I opted for a TURP and that had me peeing like a schoolboy again and sleeping through the night. However, the post TURP pathology showed some Gleason 3+3 and a later biopsy confirmed that but  in just 2 cores. My urologist was fairly confident that my condition would not progress but sensibly put me on AS. Two years later, my PSA was reading 3.9 (take into account that I had a much reduced prostate from the TURP). I then had an MRI (pirads5) and a targeted transperineal biopsy that showed Gleason 3+4 in 15 of 20 cores taken and I was categorised as T2b. I opted for RARP with Neurosafe and the post op pathology upgraded me to T3a with, thankfully, clear margins. That said, my last three PSA readings have increased, albeit still at a low level but nevertheless concerning. In your case, AS may be a reasonable first choice but you must be sure - and insistent if necessary - that at the very least you have quarterly PSA checks and an annual MRI.

Good luck, Peter

Hi Keith,

As far as I'm aware I've never said I recovered from incontinence quickly..

My surgeon told me he was particularly pleased with how the uretha reconnection had gone during the op.

However, although I was completely dry through the night, from day the catheter was removed. I was incontinent for 7 months during the day, before regaining control. My CNS said this recovery was average.

Hi Keith

Please see my thread below for details of my journey so far

Confused by diagnosis - Being diagnosed with prostate cancer - Prostate Cancer UK Online Community

It was not a straightforward decision, and 6 months after commencing AS I am now going to be coming back off it (either voluntarily or otherwise, depending on my next results) in the summer.

If nothing else, it has bought me 6 more months without any of the side effects of treatment, so I don't really regret going for it. I would just advise you to be very much on the ball with chasing repeat tests/results. Make sure you have all of the information you can possibly get your hands on. If I had not insisted on seeing a copy of my histology report, I would not know they found Crib/PNI in a couple of my cores. If I had not insisted on speaking to my consultant about my last set of results, I would not know that two separate pathologists had scored me higher than the third (whose results prompted me to go for AS originally).

Good luck with your treatment whatever you choose mate, and keep us all posted.

Ian.

In short: I was 3 years on AS.

Starting initially with PSA 5 at 62 years old

A year later increased to 6.5. 

           DRE and Biopsy was negative. Diagnosed infection and prescribed antibiotic that brought down PSA to 5.0

A year later PSA rose again to 7.6. ُ

           DRE & MRI negative. Assuming it was infection, Prescribed antibiotic again that brought down PSA to 6.3

16 months later, PSA 11,

           T3a, biopsy negative. Biopsy again that showed 3+4.

Had robotic radical prostatectomy 2 years ago 

            pathology results T2c, G7=3+4

My early tests did not show much to worry about so I stayed on AS. But I always wonder if:

1. My one of my early tests were more accurate (positive) would I have chosen AS or not?
2. Whether my AS resulted to progression of cancer?

I am also stunned with so many false tests results:

4 negative DRE by 4 different urologist?

Two negative biopsies.

One negative MRI - T3a that (fortunately) turned out to be T2c post-surgery pathology,

The only true test result was 3rd biopsy that turned to be the same after surgery (G7).

My 1st advice is, make sure your test results are as accurate as possible before deciding what to do. Even if needed go private and ask for 24 core rather than normal 12 cores. Do your MRI with much advance machines rather than old, outdated ones.

2nd advice especially if you are over 70 to get ride of it sooner than later. The chances that you could have surgery get thinner as you get older.

Best Luck

Fred