Prostate biopsy indecision

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Hi,

This is my first post on any website forum of any kind so please bear with me 

My journey is only just about to start but I am already stuck and feeling very isolated. 

In March 2023 I took a PSA test that came back at 4.3. I understood PSA tests weren’t reliable so I remarked; what about an MRI scan. I had an mpMRI not realising I was to be part of a study (Translate) that I had not been informed about. I was not happy with this and did not agree to be part of. when I got the results that showed a low signal intensity lesion that qualified as PIRADS 3. And I was to be booked in for a biopsy. 

I had no knowledge of prostate biopsy procedures until I was given the leaflets on that day. Safe to say head went into a state of shock and panic, I was nowhere near ready for that nor properly informed . So prevaricated while desperately trying to gain more information from the internet including all the big charities but nothing really helped, only basic information. Even some staff from the Urology clinic not were not at all empathetic and I was feeling real pressure.

I did not see a consultant until I had requested a second opinion. But this was still with the same consultant, we agreed to a second MRI for comparison but it wasn’t the same mpMRI scan that took at least 45 minutes and used contrast dye. This time it was in a mobile unit and took less than 15  and no dye!  I didn’t even have to take my jeans off, just pull them down over my knees inside the scanner? Next minute I’m in the car park.!  6 or 7 weeks later he called said it has now gone to PIRADS 4 !  Again shocked, call only lasted a few minutes, and most of it went in one ear and out the other. How can that be? Just didn’t feel right.  Now too embarrassed to question again.

Now one year on and back where I started with the same people.

I think I have run out of options. I go ahead with the biopsy not happy about it, or go private and start all over again.

Why don’t they show you your scan, I’m naturally very good at seeing fine detail in things; it’s an ability I used in my work.

I think I have lost faith in system particularly as it started badly. Now I’m worried about the time that’s passed.

Incidentally we lost our thirteen year old dog to liver cancer in December, 14 months after having major surgery to remove part of her liver. She was my best friend and this has hit me hard. I also lost a sister to cancer over 40 years ago age 23 she passed within 6 months of being diagnosed. That was truly devastating !. You never forget !  This obviously has affected how I see things.

previous PSA results 3.8 in December 2022.  Current 4.1 February 2024

Better give you my age 68 years young.

TODAY!  I find you hopefully a ray of hope!  I don’t know where to turn. I just need to be properly informed , likely more than most, from people with ( EMPATHY) who I have total trust in. 

Kind regards 

Peewit

  • Dear Peewit,

    Thanks for getting in touch and welcome to the Macmillan Online Community Peewit. My name is Kerry and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

    I’m sorry to hear of the difficulties you have faced and that you have felt unsupported with information or empathy, I can only imagine how difficult this must have been for you.

    Hearing you have had changes in your PI-RAD score understandably must have been a shock for you.

    I was wondering if you have a Urology Clinical Nurse Specialist (CNS) that you can contact if you have one. You could contact them to ask any questions you may have as they will have access to your medical records and can liaise with your consultant if required.

    I’m glad you felt able to ask for a second opinion, however it sounds like your consultant was happy to talk things through again.

    A second opinion isn’t a legal right, but most doctors are happy to refer you to another colleague or hospital, there is further information on this here.

    It is important that you have the information you need to make an informed choice about undergoing tests or treatments. 

    It may be helpful to ask if you can have another conversation with your consultant to discuss your questions further or ask if there is any possibility of seeing your scan to help you further understand.

    Prior to speaking with your consultant or CNS it may be helpful to write questions down before hand as to what you want to understand further, you could also email these questions to your hospital team, if possible, as clinic appointments can be time limited.

    Unfortunately with a PI-RAD score over 3 the recommendations is that a prostate biopsy is undertaken to understand the cells further and to determine a diagnosis, however please do discuss this further with your consultant if you have any concerns as you need to make an informed consent for this procedure.

    If you have any concerns about your care, you can contact your hospitals Patient Advice and Liaison Service (PALS) for further support and investigation into this if needed.

    It sounds like you have been through so much with the loss of your beloved dog to liver cancer and your sister to cancer too. It’s understandable that everything you are going through may have brought up upsetting memories or thoughts.

    It’s important to look after yourself Peewit and get support when you need it. Here at Macmillan, we have our support line where you can chat to us about how you are coping or we have our online community forums to chat to others who may be in a similar situation to yourself.

    It can be hard when we lose those close to us, Cruse bereavement charity is available if you need any support Peewit, you aren’t alone through this.

    I hope this information is useful. Please don’t hesitate to get back in contact by emailwebchat or phone, if you need further information or support.

    The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

    Best wishes,


    Kerry

     

    Macmillan Information Nurse Specialist
    Macmillan Support Line


    Our Reference: Kha/CF

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