I was diagnosed 2 years ago with stage 2 prostate cancer having a 6/6 on the Gleason scale, I was informed I was a perfect candidate for the active surveillance (AS) program, after nearly two years of having my PSA done every three months I asked my GP what was happening regarding my AS seeing how my PSA was rising month after month, I was reassured everything was ok but I didn’t like their response and decided to contact the urologist myself, I was shocked to discover they couldn’t remember me nor the MRI or biopsy they had conducted, they found my details on a different account and rushed to get me another MRI and biopsy only to be told it’s now grade 4 metastatic Gleason 9/9 and to be removed asap, my surgery is scheduled for the 29th September for the De Vinci robotic procedure, so many emotions at the moment all caused by poor administration, I’m positively positive reading some of the threads on her, nevertheless guttered.
Hello Jimpay2c - Welcome to the Community - we aren't a bad bunch!
That's some rough ride to go from Active Surveillance to joining the Gleason 9 club!! You are correct to be angry with the way your diagnosis and care has been neglected - I would be looking for answers - but first and foremost I think you should put your priorities on to the preparation for the surgery and the after effects of the surgery.
As you have been reading the various threads I am sure you are aware of the process, the after effects of the surgery both short and long term but if you have any specific questions, please feel free to post them.
As a Community we are all here for you - feel free to ask anything or even if you just want to let rip with your emotions - this is the place to be. If I can do anything for you just ask.
Best wishes on your journey and operation.
Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
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Earlier this week I emailed Prostate Cancer UK as they're running a campaign to encourage men to get tested. I told them that more GP and receptionist training is needed.
My husband had to wait 6 weeks for a PSA test because of the GP practice receptionist and a locum dr not responding to his request. It took 3 months for him to get his diagnosis of locally advanced prostate cancer.
The response I got was that they train 9000+ GP's a year, but don't train receptionists. They said they would raise this with their colleagues to see if they could include receptionists in future.
I told them that my husband didn't want to make a fuss, but they gave advice about making a complaint. A letter of concern rather than a complaint was posted through the surgery letter box this evening and we now await a response.
It appears that you have been failed at all levels and although it won't undo the new diagnosis, when you feel able I think you should make a complaint. I suggest that you contact Prostate Cancer UK as they may help you with this.I attach a screenshot of the email they sent to me.
My husband had his surgery in June but he will still need to have regular PSA tests to check that it's not come back and I worry that he could be in your position down the line due to negligence.
Of you look at my profile you can read about my husband’s journey.
I wish you well with your surgery.
