Treatment time-line your experiences please

Hello Osca2023 

It's no problem sounding off - as I say better out than in. With your delays I can fully understand your frustration. The NHS is too big but at the same time it needs to be reorganised but by medical people, not someone just wet behind the ears, just out of University with a degree in "The Obvious".

From my personal journey of 26 months, I have almost been discharged from hospital with a diagnosis of a UTI rather than Prostate Cancer and CKD. I have been on the list for a TURP operation for 11 months - it should have been 3 meaning I had an indwelling catheter for 11 months!!  I have been called to a meeting with my consultant twice asking if I wanted to complain about the delays in my treatment - BUT at the end of the day I am a lucky boy  Once in hospital I was put on the cancer pathway at the get go - any delay with my PSA of 182 and the bast*rd could have gone "walkabout".

It's swings and roundabouts with the NHS - as I say I consider myself a lucky boy and am enjoying life to the full as much as I can. I can say they were there for me when the muck hit the fan!!

You take care and you know where we are if you need to vent.

Best wishes - Brian.

Late yesterday afternoon (29th February) I penned a complaint to my local Trust Complaints and PALS Teams. Today I have received an email apologising for the delays and informing me of a pencilled in appointment for me on the 25th March 2024. That is four days short of a year from the results of my first PSA test.

Hopefully things will now move forwards with my RT.

Full updated timeline is in my profile. 

Hello Osca2023  Well that's an improvement - I assume the 25 March 2024 will be your "Radiotherapy Planning Scan".

Just looking at your timeline, the "Urgent Referral from GP to Hospital" has missed the NHS deadline but you have entered the Cancer Pathway within the time line - although after you have been seen I agree treatment has been slow.

Thanks for the update and I do hope you get the appointment on 25 March.

Best wishes - Brian.

" I do hope you get the appointment on 25 March" thanks Brian, you and me both.

Hi Osca2023

We live in the Shrewsbury & Telford Hospital Trust area. My husband was diagnosed with prostate cancer following the results of a biopsy carried out in mid September 2023. He was advised to have a bone scan which was carried out in mid October. He then had to wait for an appointment with Mr Lynn on 15 November to find out the results of the bone scan and the proposed treatment options. He opted for removal of his prostate but was told by the consultant that he had no idea when this would be. This finally took place at University Hospital Stoke on 12 February 2024. We now have to wait until 17 April to speak to both the consultant who carried out the operation and the local consultant he saw in Shrewsbury back in November.

Initially things seemed to move in two week stages until the biopsy was done and then everything slowed down. I'm still not sure that he made the correct decision but there didn't weem to be much support from the hospital in weighing up pros and cons. I wish we had done more research but anyway it's done, although he is now suffering with incontinence which we can only hope will improve with time.

Nobody has ever mentioned Gleason scores to us.

Hi Maddox , nice to hear from someone else using the same hospital trust and the same consultant. However there our paths diverge as I am going down the radiotherapy route. I keep my timeline reasonably up to date in my profile which you can read by clicking on the icon to the left of my forum name.
I felt lucky to be able to chat to a few friends  about the options including a recently retired GP and of course my wife before deciding which way to go.
The waiting and almost complete lack of communication from the hospital has been the most annoying aspect. The HT and resulting hot flushes have been an annoyance but no more, I tried sage tablets (Menoforce) but these had no affect.

Like your husband I was never given a Gleeson score but I did press the nurses in the urology department and got it verbally although I was told that they don't use those figures any more.

I find my willingness to discuss my situation with friends and the never ending support of my wife the most reassuring things in life at the moment.

My very best wishes to your self and your husband, I hope everything continues to improve.

Rod

Good Morning Maddox .

A warm welcome to the online Community - I am so sorry to find you here but it's a great place for help and advice. I know it's a bit late as you say but on diagnosis you should be given .your Initial PSA figure, the Staging known as TNM score and a Gleason Score This helps your team (and you)decide on your treatment plan - I am Original PSA 182 T3aN0M0 Gleason 9 (5+4). - again you can read my journey by clicking on my icon or name.

Something else I advise if you live in England (but not anywhere else as the don't support it) is to ask for full access to your Medical Records on the NHS app. You need to make sure they know you mean full too!!

I do hope his incontinence improves - there's plenty of Community members on here going through just the same issues.

Best wishes - Brian.

I did that but the App only shows results for tests etc requested by the GP nothing ordered by the hospital. That said the hospital copy me in on every letter they send to my GP.

Yes, it's a bit of a strange one that. I am under 3 NHS Trusts (one for urology - once for oncology - and one for Radiotherapy) plus the GP.

One trust has it's own app (My Chart - cracking app by the way) one trust adds to my NHS App and the other doesn't.

At least it works with the GP.

Best wishes - Brian.

I think the NHS App is very localised in the connectivity from hospitals and GP surgeries.  In my own area all the services I use aren’t yet connected (oncology, radiography and pathology) but the list of ones that are connected is massive.  I guess it will all get connected one day.  Mr Hunt certainly allocated a big chunk of money last week but I am not sure I have that much faith in NHS computer projects.