Benign biopsy, what to do next, have they missed it, worried..

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Hey everyone,  looking for more advice. Results appointment was supposed to be Tuesday but hospital have phoned today. 

All appointments etc and discussions to now indicated we would be given a confirmed diagnosis after the biopsy results as my husband had a pirads 5 lesion and 2 x pirads 3 lesions.  It was thought to be contained with no spread. The nurse actually called today to reschedule Tuesday's appointment and casually said oh by the way your results are benign, do you still want the appointment or is that you.

I'm more scared than ever. I know perhaps we should be happy about benign results but we were so convinced especially given the information that it would most likely be cancer.  We have a call scheduled Tuesday.  Could they have missed the cancer , is it usual or right to ask them to check again, is there point in further scans or redoing biopsies, any advice would be greatly appreciated. What should we be asking.

I know so many you have much more to worry about but I am terrified they misdiagnose and it leads to worse issues down the line. His symptoms are still the same, he is only 49. 

  • Hi Marie 

    my husband 58 had PIRADS 5 and was diagnosed Gleeson 9 in April, but prior to the biopsy I was surprised by the consultant who told me upto 20% of PIRADs 5 are diagnosed benign. 
    so it must happen and you are perhaps one of the lucky ones. 
    However I would most definitely want to speak to consultant and see biopsy report and clarify if they felt the PIRADs 5 area had been caught in the biopsy. If you still feel unsure I would ask if you could be looked at again in the near future? 
    Take care 

  • Hello  

    Well it does sound like good news - but I have checked your previous posts and can't find a mention of his PSA results?

    I am in agreement with  and would want to see the consultant with PIRADs 5.  If you are not happy with his explanation you are within your rights to ask for a second opinion - here's our advice on this:

    https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/getting-a-second-opinion

    If I can do anything else for you please give me a shout.

    Best wishes - Brian.

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  • Hi Marie

    One important thing missing as Brian has mentioned.

    Do u have any PSA figures, the more u have the better, it could tell us more

    Regards 

    Steve 

  • So his psa was 8.9 before mri etc    

  • Ok, so a bit puzzling with a raised PSA albeit not that much.

    I would Def want to see a consultant to try and establish what is going on.

    I would probably push for another PSA and MRI soonish just to be sure.

    Also a raised PSA  can be  for other reasons like an infection so that also needs to be checked.

    Best wishes 

    Steve 

  • Thanks so much for the advice,  with his age the psa although not super high was still high and they checked infection etc a few times,  we're also concerned because there were 3 lesions and not just one which I thought would be more inkeeping with a benign condition.  I'm really not trying to be negative or wish cancer on him but just terrified it's missed 

  • Marie 

    Well as u have said 2 lesions are Pi rads 3 so those not as likely to be cancer although realise they are saying benign.

    Only one a P5, would be handy to know the benign tumour size in mm because if smallish IE 3-8  mm. ish then time on your side and u could just monitor, perhaps a bit like going on active surveillance.

    I don't think u have too much  to worry  about right now, easy to say I know, but just keep asking and monitoring and if essential at some stage have a second opinion but may be a bit early for that. See what is said at your meeting 

    Best wishes 

    Steve 

  • Hello  

    Thank you for coming back to us. For a 58 year old male that's double the normal PSA so something is going on.

    I agree with Steve ( here. i think you need an up to date PSA test and a Scan to see what is going on.

    The sooner it's sorted the better as your husband is at a good age to deal with any treatment needed.

    Best wishes - Brian.

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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

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