Gonna live forever

Amnesiac 3 days ago

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After my robotic prostatectomy in March, I eventually had my histology discussion 11 weeks later which was generally positive but I didn’t have ‘clear margins’ and at at one point the margin was only 1mm which caused me some concern.

My final blood test discussion was booked way past the expected 12 weeks after surgery date and despite many emails/phone calls with the secretary and involving PALS (who were very helpful) I could not drag this forward.

I had my blood test (the result of which would be available in 2 hours) and was expected to wait 5 weeks to get the result. Fortunately, the same week I had a doctors appointment for a suspected UTI, and after explaining my predicament he kindly told me my PSA result (I wept like child) plus printed off letters I hadn’t received relating to histology etc.

Today I had my consultant meeting (at week 18) and he confirmed that my PSA is less than 0.025 which is the limit of the test. He was also confident that ‘the burn’ would have killed off any strays around the 1mm margin.

I am obviously over the moon with this although I realise things could change should my PSA rise again in the future - next test in 2 months.

I feel fine, am fully continent (keeping up with pelvic floor exercise) although ED is an issue that may or may not resolve.

I am extremely grateful to all concerned with my treatment and to you guys on this forum for helping me keep perspective but just think that the awful anxiety caused by the endless waiting could be alleviated with some common sense.

Millibob 3 days ago

Hello Amnesiac

It's great to hear from you and that's a post full of positives. I am so pleased it's all gone well for you. I appreciate the ED is a problem - have you spoken about this as help is available?

The issues with delays in the NHS vary from area to area and I think everyone needs to be proactive (as you have been getting PALS involved).

As for test results I am a firm believer in the NHS app in England. Once you have it get your GP practice to give you FULL access to your medical records and you see your test results as soon as the GP does.

I wish you low PSA results for the rest of your life!!

Best wishes - Brian.

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Amnesiac 3 days ago in reply to Millibob

Thanks Brian

Firstly I’d like to thank you personally for the help and support you have given me and to this forum of amazing people. I honestly don’t know how I would have coped without this.

I do use the NHS app and it’s very hit and miss regarding what is shown on my record - some letters, some results but definitely not everything.
The delay in getting test results is really poor. I asked for a 5 minute phone call to get result and advised couldn’t be done. At one point was told they were having a problem in booking a room. Really?

The ED isn’t the end of the world for us as desire is still there and more importantly, love. Enjoyable activity is still possible and consultant says, with exercise things could improve over 1 or 2 years.
I am still in quite a euphoric state and feel so lucky to, so far have the best possible outcome from something that was initially very scary I really can’t stop smiling.

Thanks again and good luck to you with your continued treatment - and enjoy your other life in Turkey :)

johnam 2 days ago

Wow fantastic news . xx

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Gonna live forever