New here and anxious

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Hi, I'm new to all of this but here goes. I recently went to my GP because of a tingling sensation down below. After a prostate check they sent me for an urgent referral. Since then I have had a biopsy, MRI & bone scan over a 1 week period. Now for the waiting game. My summary letter come through of a telephone discussion which says my PIRADS level is 5 lesion, PSA density of 0.24 and PSA level is 5.1. Of course the first thing I did was go on the internet and I am now in a state of doom and the feeling of my life just passing by. I cant seem to get out of this state. Any advice or experience shared would be helpful thanks.

  • Hello  . You have some answers now but have a big decision to make on the choice of treatment. NICE have some guidance on the side effects from these options - particularly box 2.

    https://www.nice.org.uk/guidance/ng131/chapter/Recommendations#localised-and-locally-advanced-prostate-cancer

    The good news is that you are on a curative pathway. Make a list of the possible side effects and then prioritize what is most important to you. Speak to a surgeon and an oncologist and in particular the types of treatment that both are proposing. Don't be rushed.

  • Thanks for the links guys and support. I am very much “get it out” kind of person. I’ve talked over side effects with my wife and to be fair she also would prefer prostectomy as from a future risk point of view I can get radiotherapy if it returns. However, after radiotherapy a prostectomy is slightly more difficult if it can happen at all. I also have talked to people that have had both options and certainly from a recovery point of view the prostectomy sounds better fit for me. I have also had lacroscpic surgery before to remove a GIST tumour so I do know what to expect.

  • Hello  

    I am very much “get it out” kind of person.

    I wish you well with your surgery, do keep us posted with your progress.

    Best wishes - Brian.

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  • Phone call today, next Friday prostectomy booked, that was lightning quick! Don't know if that's good or bad!

  •  - wow! That was quick.  Maybe because it’s still tiny, but it’s Gleason 9 so they want it out ASAP.  Where is your hospital?  AW

  • It's at the Freeman Hospital, Newcastle. T3a, so just starting to break through! Bit of a battle ahead i think!

  • Hi

    I had a similar diagnosis with a PIRADS 5 Lesion and PSA 6.94. Suggest you read my profile to find out about my treatment.

    Two years on I'm feeling pretty good and my PSA is undetectable. I'm about to finish 2 years hormone therapy and find out if the radiotherapy has done its job and I'm in remission.

    Its a stress full time while you undergo all the tests prior to diagnosis. Focus on the people you love and the life you enjoy is the best advice I can give,

    All the best Rob

  • Good bio, definitely in a similar situation. However I've also 18/21 cores, so looks like i'm in for a bit of a fight. The prostate comes out on Friday and then I will hopefully have a clearer picture of what is next.

  • Operation went ahead as planned, had to take more away than would like, very uncomfortable but manageable, stomach very tender where they went in with the robots. Waiting for follow up meeting but was pre warned due to my age (54)they would want to go in with follow up treatment aggressively.

  • Hi  - glad to hear the operation went well. Don’t be too worried about the description of aggressive follow up- it just means thorough radiotherapy. The oncology/ radiotherapy teams are so kind and knowledgeable about their profession (as you would expect!) and this follow up should remove any potential escapees from causing trouble in the future.  Well done and good luck with - hopefully- a swift (and dry) recovery.   AW