In middle of diagnosis, complete lack of information

Hello Mike (Madmike ) 

Welcome to the group, although I am so sorry to find you joining us.

Hospital results do not normally appear on the NHS App - indeed this only works in England - the devolved nations won't pay for it - some hospitals use their own App (My Chart - Patient Knows Best etc).

There will be information - you know your PSA - the MRI Scan should be available to your GP to view and you are aware the CT and Bone Scan are clear. Your biopsy results will give you a Gleason and TNM Score - these will be used in conjunction with your MRI results to go before an MDT meeting.

THEN once this meeting has decided on a treatment path - you will be given the options with their preferred choice of treatment.

Sadly this is the NHS of today. You could chase up your biopsy results but they can take from anything from a week to ten weeks to appear!!

I hope the above helps. Not the best service in the world - but it does get easier once you have a diagnosis and start treatment.

Best wishes - Brian.

Thanks

Let’s hope it was a temporary anomaly. Although I think not a rare one. I found out about possible prostate cancer and chronic kidney disease when I cut and pasted my blood results into AI.

Had a message from the surgery that my cholesterol was a bit high and I wanted to see how high it was. The primary response from AI was about PSA and EGFR, very unexpected. I spent an hour contesting the results with AI, but after being referred to NICE guidelines and other documents I needed to check.

I called the surgery and had a bit of a job getting past the reception to discuss the findings of dr Grok until I asked the practice manager to explain why the surgery was not following NG 131. An hour later I was on the 2 week wait referral.

I think you do have to advocate for yourself. I have to say since that phone call the response times have been excellent. 

Best wishes going forward . 

Hi Madmike sorry to hear you are being given the runaround.  The NHS is brilliant but does have the ability to fail to join up the dots or even know that there are dots.  If you are diagnosed with PCa in England you generally get allocated a Cancer Nurse Specialist or team.  In my case I know them well and have phone numbers and email addresses for them.  Anyway, I have found once this team are aware things can get speeded up (maybe I have just been lucky).

I wasn’t sure how long you have waited for the biopsy results, but by 3 weeks I would start kicking off.  Obviously politely but firmly.  Waiting for results is bad enough but things seem to bottleneck over Christmas and Easter periods.  Please feel free to ask anything, but remember, PCa is very slow growing and a month or two probably won’t matter.

I too have had difficulties with my GP............but asking your practice manager why the surgery is not following NG 131 is asking the wrong person the wrong question. Once you have been put on the 2 week pathway the whole thing is managed by the hospital you have been referred to. Your GP will only carry out (relatively minor) tasks that they are instructed to do by the hospital. 

It does appear that once your hospital has taken over things are moving forward now.

I really would not consider "advocate for yourself" on serious medical matters using internet AI.

Thanks

thanks

On another note. I do hope all hospitals get on the NHS App. It does seem to be one of those rare government IT projects that is genuinely useful for the user. 

All my GP test results, documentation, telephone summaries etc appear very quickly. Most of my hospital documentation has arrived. I was even able to sign the biopsy permission form electronically via the app. The MRI information has not been added, probably bespoke format. Also no secure communication portal to the urologist department. It’s clearly possible to add this and I have gave feedback to request it. 

I wasn’t put on the two week wait. I wasn’t even informed about the raised PSA by the surgery. Apparently my results went to a temporary GP. I decided around two weeks after getting a text about lowering cholesterol to see if my cholesterol was just raised or actually high. 

AI is a really useful tool if used correctly. It identified the raised PSA and the reduced EGFR. The receptionist didn’t seem to believe me as there were no notes about it were on my file. The request for the practice manger call back obviously resulted in the reexamination of my blood test. I got a call an hour later a referral letter had been sent. 

Hi my husband had PSA level of 4.6...mri showed PiRaD 5 aND 14 TaRGET BIOPSY TAKEN ON 14TH Januarv 2026 ,today 22nd we recieved a phone call from hospital no PC But a case of inflamation!!
Will send a appointment to discuss, and said mri again in 6mths
We are soooo grateful, the tears and anxiety, im so grateful to read all stories on this forum, you all don't know how much ppl have helped by sharing their experiences
I remember reading about 2 young men under 50 who said thev had PI RAD 4 OR 5 BUT NOT PC and how ! prayed that would be us!!
Im sharing our experience here too
Changed diet to plant based, lots of brocoli, legs, fruits, etc,
My husband is 46yrs old...