Found out Monday love some positive advice

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Hi everyone I’ve found out on Monday I have prostate cancer My Gleason is 6 and I’ve been put on Active Surveillance My dad also had it and is still alive at 85 and is still under surveillance I guess any advice or comments might help My head has been a bit all over place and I thought the best people to talk to are ones with experience 

  • I know what you mean about biopsies. The first one the tried on me the local anaesthetic didn't work and I screamed like a kid. They had to prise me off the ceiling. I've had general anaesthetic every time since.

  • Hi OW

    General is the only way to go in my humble opinion. Like you I'm sure my local didn't work - my language was appalling!

    Regards

    Stuart

    Trying to get fit again!
  • Hi all.

    The nerd in me wanted to know the evidence for repeat biopsies in those on Active Surveillance, particularly when MRI's are used on an annual basis and PSA is monitored regularly. I think the current idea is that it should be led by initial Gleason, PSA, biopsy histology, volume and age. All recommendations say that the biopsy should be repeated after a year. If the histology remains the same and there is no, or marginal increase in volume at DRE and MRI, and the PSA increase remains less than 0.7 then a repeat biopsy may be pushed out to 3 years, then 5 years after initial diagnosis unless, of course, things change at the routine testing stage. The conclusion is also that the most accurate results are with a biopsy. The other finding is that many men do not follow the AS protocol because of previous experiences of the biopsy. If anyone wants to read the review then I have attached it.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10145015/

  • The main thing is your stats are low and it hasn't spread, I'm sure you'll be fine.

    They wouldn't have started u on AS if they didn't think that.too.

    Good luck and keep us posted 

    Regards 

    Steve

  • Good Afternoon  

    Well thank you for that information - I must confess that I thought there would be some form of protocol where the "guidelines" for AS came from but I had no idea where to start looking.

    As someone who has had a biopsy (and used "industrial language throughout") I would have another if I knew it was for my benefit and was needed to check on the progress (or lack of) of my cancer. This is of course my personal opinion.

    Best wishes - Brian.

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  • Just to say that even with the protocol things can still go belly up. Despite all the testing since 2010 with repeat biopsies, DRE's, PSA and MRI's my husband's cancer progressed in a matter of months in 2020 from AS to stage 4. PSA had remained low, he had no flow problems and the only issue was occasional UTI's, however, there was a strong family history of prostate cancer and cancer generally in the family.

  • Hi Stuart, I’ve recently had the biopsy which came back positive and whilst I know where you’re coming from regarding number of samples, I had a few injections to numb the area and then two thin tubes were inserted through the Perineum and then samples were “grabbed” from the prostate through these following a couple of numbing injections in there. I wont sugar coat it and say it was a comfortable experience but it’s definitely not 30 injections.., yes there was stings from the initial injection, any further pain from the collection samples was uncomfortable rather than painful in the instant they occurred, this quickly passed though

    . Hope this helps

    best regards

    John

  • Hi Prestonbloke, I’m 57 & recently got diagnosed with Gleason 7 stage 2c prostate cancer and I am looking at an op in around 8 weeks time. I’m a laid back don’t get anxious type of a guy but I’ve had the odd moment so to speak, but  think we’re all entitled to that moment as it’s all about the “big C“ that most of us would likely state that it only happens to others, but unfortunately as we know only too well, cancer isn’t that picky.
    Personally I had one day off work after the biopsy before I was back at my desk. Luckily for me both at home and especially at work everyone is a hugely positive about the outcome in the future, so much so at work the humour can be brutal, but it’s what’s needed for me, but it also offers me the opportunity to not bel sat at home wondering about the future, I couldn’t do that route, for me, that way lies madness. 
    what I’m trying to say, is, if maybe a bit crassly, if you’re able to and well enough to, then my advice, such as it’s worth is to fill your days with something, and if that’s work, then why not? 
    for myself, at my stage, having the op will likely mean 6 to 8 weeks off work, but if I was a manual worker it could be up to 12 weeks. I’ve got 8 weeks to go before I’m on sick leave for 8 weeks so I don’t have long to pull in the drawer strings, but as I believe you’re on AS I’d start saving a bit each week if you can just in case you end up at the operation stage sometime in the future. 

    all the best & take care

    john

  • My first biopsy was really painful and I don’t think I could have lasted much longer, I was taken aback as the consultant told me it was relatively painless, that was in 2022 after raising psa tests with the last one at 10 I was sent for another mri and biopsy. 

    I told the consultant before the second biopsy that the first one was very painful and he seemed surprised and said that’s ok we will give you gas this time and that was much more bearable. 

    The first biopsy came back clear but second one came back with 4 out of twelve samples showing cancer, non aggressive and slow growing with a Gleason score of 3+3 

    I opted for surgery and waiting for consultation, but today I had my latest psa test results which came back at 8.8. 

    Now I’m unsure which option is best for me. 

    My first post on here and good luck to all , I’ve found everyone on here very helpful so thankyou for that. 

  • Hi like you I’m new to this forum and going through a similar situation, I’ve just updated my profile if your interested to look, my Gleason score is also 3+3   

    I was given 3 options which were Active surveillance, surgery or RT I opted for surgery , I didn’t know at the time of consultation that you could go on A/S if cancer has been confirmed. 

    Like you my head was all over the place at the time, my last psa reading came down from 10 to 8.8 and I’m now unsure of what the best option is for me. The decision is very difficult. 

    Was you given any other options other than A/S ? What was your psa readings?

    Mentally it’s tough but this forum helps to talk to like minded people who are very good