I've been given a low grade prostate cancer diagnosis: localised prostate carcinoma Gleason 3+3=6. I'm 56, healthy, very few symptoms (slight change in pee flow, but this is stable)
I had a biopsy in July and Oct 2022 (the first one did not tally with the MRI, so I had the second one, which did). I had another MRI in Sept 23, which showed a slight improvement in prostate abnormality. My consultant wants me to have another biopsy, as part of an 12month check.
I'm not keen, as I found the biopsy quite traumatic - mostly the after affects, of having blood/discoloured semen for several months. I knew this was a possible side effect, but it was very alarming, and impacted on sex, my sense of my sexuality, attractiveness, vitality and potency.
I feel I'm on a medical conveyor belt, and under pressure to have the biopsy or be taken off the active surveillance programme.
I find it hard to know where I put my trust.
I know I’m healthy, low risk, and yet I am frightened and anxious. I think I’m still processing the diagnosis, but feel the pressure from the medical interventionist model.
My preference was to wait another year, keeping an eye on 3 monthly PSAs (they are mostly stable, at 8.9), and then have another MRI, and if there were negative changes, to have another biopsy then.
Do I follow my instinct, to wait, or follow the pressure from the consultant? If I wait, how do I manage anxiety, fear, uncertainty?
I was wondering how others have navigated this?
Hi Paul
I think I understand your concern , potentially 4 biopsies in 2 years.
Matter of interest do u know what the biopsy said in July 22.
I don't like the pressure being put on u , biopsy or come off AS.
What does the most recent MRI say in terms of size and location in the gland.
The question would be from myself, if everything is low why another biopsy, only shows the Gleeson.
Have the 3 biopsies been the same Gleeson.
Regards
Steve
Hello Paul28 A warm welcome to the online Community.
You are at a crossroads where many have been before you. On one hand you have a Gleason score of 6 and a PSA of 8.9 and on the other hand you feel well.
Personal opinion, go with the professionals - you need them onside as you are on Active Surveillance, your PSA will not be reducing and there's going to be intervention at some point (Surgery or HT/RT). I think your team have your best interests at heart and they are trying to make the decision when to come off AS and be treated. You are at a good age to recover well from any treatment and I would be following their advice.
Others may differ in opinion - but that's my view - with the information you have given me. Once treatment starts - your anxiety levels will come down.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hello Paul, my husbands PSA was raised for several years just a tad above the ‘safe’ limit. At that time they would only do a biopsy through the back passage ( higher risk and more chance of a false negative) and without having an MRI first! So absolutely no certainty that they would hit the cancer cells. He declined. The agreement was 6 monthly PSA s and to be referred back to urology if his PSA reached 10 which it did in June 2022. He was totally without symptoms and the doctors could not feel anything amiss with his prostate. It turned out he had T3a no mo Gleason 4+3. He was fortunate ( hopefully) because the cancer was bulging against the wall and had potentially broken through - hence t3 a. If he had not been referred at that point I dread to think where we would be now! The cancer might have spread further and gone beyond ‘treatment with the intention to cure’.
we wondered then whether he should have had the biopsy when first offered. At that point the chances of cure might have been higher? Might he have been a candidate for successful surgery without the risks associated with being older?
these are questions nobody can answer, of course. Similarly, nobody can tell you what you should do. But, if you don’t have the investigations I think you might be worrying about the ‘what iFs?’. You already know you have a cancerous tumour there . so, will you be worrying that you might be leaving it too late for a cure or will you be able to put it to the back of your mind and just get on with life?
.I’ve just asked my husband if he regrets leaving things until later and he says the Truss biopsy without mri is equal to playing darts blindfolded. If the more modern techniques had been available then he would have wanted it to be done.
this doesn’t really give you any answers, I know, but I hope our experiences might just help you come to a conclusion which is best for yourself x
. ,
Sounds like they did the biopsy before doing a MRI WW.
Unless I'm reading it wrong, but strange if they did that
S
You have got it absolutely right! They only introduced mri before biopsy once it became a formal NICE guideline. It was some years ago now. We lived with 6 monthly PSAs rising very slowly - always knowing we were potentially sitting on a ticking time bomb. How things have changed in the last 5-6 years!
Hard to believe they would ever do biopsy first.
Your OH, just in time thank goodness.
S
We complained bitterly at the time. If I knew then what I know now , we should have gone to a different hospital trust
Yes Def, what year was that cos I thought it was MRI then biopsy a long time ago , about 8-10 years ago
Hello Steve , it was about 5-6 years ago - give or take!
The issue was raised with the hospital trust locally!
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007