12 months after my prostatectomy and without hopefully sounding too dramatic, my whole life seems to be falling apart.
It didn't start too well when it took my GP's over a year to do my psa, with the same old reasoning for not carrying out the test, there are too many false positives. Then my op was cancelled as I was literally getting ready for theatre as a result of an error by the preop nurse.
Op went well. 10 days but after op I got a letter which contained information that perineural invasion had been found in the core biopsies. I had not been made aware of this. All research I read suggested that the presence of perineural invasion made nerve sparing surgery more risky but when I mentioned this to my nurse she said im sure the doctor knew what he was doing, she refused to arrange for an earluer appointment. 3 and 6 months psa, undetectable. Gp took bloods for psa at 8 months , detectable at 0.04. At 12 months psa 0.07. Not huge figures but a pattern upwards
At 8 months lost all bladder control, nothing changed. Specialist community nurse way of dealing with this, send me out another copy of the pelvic floor exercise sheet. Hospiral CNS contacted consultant who arranged a flexible cisoscopy, which showed a bladder diverticulum. I wasn't advice of any other issues. I saw the consultant to discuss the results. The letter from the junior doctor who saw me had added a small stricture at the annastomosis, he had not mentioned this to me. So the consultand and I laughed about it being a typo error. To get clarification, he rang the sunior doctor who said he could remember me.I was one of many on a clinic, and he must have had many more clinics since he saw me. He confirmed the presence of a stricture from his recollection of the procedure. The consultant decided to carry out a rigid systoscopy , which I had very quickly and which of course showed no structure. Spinal anesthesia and sedation because of the typo.
How can I trust this man. Got me as far as the theatre doors before cancelling up. Not accessible when I needed to speak to him, probably because of the specialist nurse, and unnecessary investigations because of typo.
Curative op with signs of reccurence after 8 months. Still incontinent.
I an struggling.
Hello Al985
As you are aware, I am aware of your story and feel for you, so it's probably time to do something for your own mental health, so:
* Have you though of having second opinion - and changing both hospital and consultant? Link here:
* Have you gone through PALS (Patient Advice and Liaison Service) at your hospital or even made a formal complaint?
Our Support line on 0808 808 00 00 (8am to 8pm 7 days a week) are there for you - give them a call and tell them whats been going on - they can help with your feelings.
I know it's easy for me to say - but you need to advocate for yourself - I do understand where you are coming from and I am here to do what I can for you. I hope the above helps, do come back to me and let me know how you get on.
Best wishes - Brian.
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.
Hello Alan (Al985 )
It's great to see things are moving for you and that you are chasing things up. I would rattle the cage with PALS just because you can and the more people who raise their voice about someone - the more concerned their employer will be.
Do keep us posted and let us know how you get on.
Best wishes - Brian.
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.
