New to this group

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Hello, so glad I found this group, its the first time I've ventured to a forum of like minded people, to gather as much information as I can. I am 81years old, I was diagnosed with metastatic prostate cancer which had spread to my spine last October. I had PSA levels in the thousands, a gleeson score of 5+4 (9). After ht, calcium and vitamins D3 my PSA levels are down to 19.7. I am still catheterised but meeting with surgeons tomorrow with a view to making me catheter free to pave the way to radiotherapy.  Advice welcomed on choice of questions I should be asking from people who have been on the same pathway. Thanks

  • Hello  

    A warm welcome to the online Community although I am so sorry to find you joining us. 

    You look to have done really well on the Hormone Therapy and I trust you are able to cope with the side effects.

    What would I be asking the team if I were in your shoes?

    * The cancer has spread to my spine - what are you doing in the way of checking for SCC (Spinal Cord Compression)?

    * I have a catheter - is it going back after Radiotherapy?

    * I assume you have issues with the "waterworks" - I would be asking the team how they can improve the flow?

    As we are all different, there may be other things you want to ask so make sure you have a list. Here's a link to some questions you may want to consider:

    Questions to ask my team.

    I hope the above helps, feel free to ask us anything and do let us know how you get on tomorrow.

    Best wishes - Brian.

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  • Thank you for your support,  The appointment with the urology surgeons this morning went well. I have been put on a priority waiting list for a TURP (prostate scrape). Hopefully not too long. The question about SCC I will be asking my oncologist at the Christie on my next appointment.  Thanks again  .  Geoff 

  • Just to let you we are here, you’re not alone, and even with your situation you sound good. Keep the positivity ant you will live another decade or two.

    Take a few pens, a big note pad, questions that  has or will tell you about, and slow the consultant down so you can write the information and so you can understand what’s being said. Take someone or two people with you that can ask and understand too.

    Also, come back and tell us all about it when you’re done.

    Good luck

    Yake care

  • I think it’s great to reiterate and reassure people that metastatic prostate cancer can be treated successfully to allow us to live for a very long time, even decades as long as we exercise, diet and have a positive mindset. 

  • Hello Geoff ( 

    The TURP operation isn't too bad - I had mine in late 2022 at North Manchester General and details of the operation can be found here:

    NHS - The TURP Operation.

    Once I had recovered from the TURP (quite quickly) I had my 20 fractions of Radiotherapy at The Christie in Oldham.  You can read my entire journey by clicking on my name or avatar.

    Do let us know how you get on with both Oncology and the TURP - we are always around to answer any questions you have, nothing is too trivial.

    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.

    I am a Macmillan volunteer.