Treatment time-line your experiences please

Hi Steve,

As you may have gathered I have little or no faith in the way in which our NHS Trust is managed. The actual medical / clinical staff at the point of contact are very pleasant but I always feel that they lack management support.

However in addition to all of you good folks on here I have a good contact in the medical world, a wonderfully supportive wife and numerous friends around me. Ever since my diagnosis I have been completely open to friends and acquaintances about my situation, my attitude is that if just one of them discovers a previously undiagnosed illness from my words then whatever happens with my situation telling someone will have been worthwhile.

don't forget  u can always go private for a second opinion, about £250

u would need all relevant paperwork and copies of scans which u can get on a disc, cost a few pounds 

Steve

Hi Steve and jacobanddafna ,

Just to clarify, I do have my T, N & M figures and can calculate my Gleeson from my Group

T2,N0,M0 Group 3 so that should relate to a Gleeson of 4,3 (7) which as you say is a reasonably low grade affair thank goodness.

Group 3 could relate to PI RADS , likely hood of cancer, different to Gleeson but anyway looking at other stats am sure Gleeson will be 6 or 7

Steve 

Hi

I took about 2 months from MRI scan to getting a diagnosis and starting bicalutamide. There was delay of a few weeks as I had a significant birthday party in March and put off the TP biopsy until after the event so I was not dealing with the side effects.

My profile has a pretty complete timeline if you want to check it out.

So yours looks a slower process than mine.

Rob

Hi Osca

I will be 24 weeks from referral until I meet with the oncologist just to discuss treatment! - Plus the hospital knew my PSA was significantly elevated but did not disclose that to me for almost 8 weeks when I was subsequently referred to urology.  If those 8 weeks are added it will be 32 weeks since they knew my PSA was elevated, and I have yet to be offered treatment!

I complained recently, but have not been able to progress matters any quicker.

Dedalus

We did go private for a 2nd op and the accepting private hospital just requested scans etc from NHS wasn’t a problem and no charge other than the consultation. One caveat though - when we went back to NHS as was ref to oncology so no way could we fund that, we were accused of ‘confusing things’ . We were 10 months before initial HT started and 12 months till chemo started for an aggressive Gleason 9 & bone mets.

complaint currently with ombudsman. PALS and local complaints dept useless and lied in their investigation report. 

Just a little update of my timeline in my profile for anyone who is following this.

Nothing really to report except a comment about Menoforce which I find ineffective.

Progress on the hospital RT treatment is nil!

Is there anyone else in the Shrewsbury & Telford Hospital Trust catchment area suffering the same delays? 

Hello Osca2023 

So sorry to read that nothing is happening for you - the Menoforce still works for me after 20 months but we are all different. I hope the Hot flushes aren't too bad!!

Did you contact PALS regarding your Radiotherapy delay? I know the NHS is under pressure and the Hormone Therapy is keeping your PSA down to an acceptable level. If they have you "penciled in" for April, you should expect to hear from them next month for your "planning meeting and scan".

Best wishes - Brian.

Hi Brian,

Thanks for the response. Hot flushes are now something or nothing most of the time so only a nuisance occasionally.

No I haven't contacted PALS yet as from past experience with them they are little more than a parasite on hospital funds! As I've commented before, I have a complaint lodged with them that is now in its 54th week. This I have now raised with my MP and cc'd all four other local MPs giving them all a copy of the communications between myself and the hospital. 

I love your patience with the NHS but I am afraid I only see them as a totally mismanaged organisation (and I use that word grudgingly). Granted many medics are under severe pressure but when observing the number of staff that have time to stand talking about their weekend's entertainment and their shopping ventures not to mention one in particular that was telling a colleague that at mid day he had nothing else to do that day and another group of ladies who managed to muddle up urine samples whilst standing nattering. I despair at the lack of management. Perhaps an industrial time & motion study of the administration would free up enough money to fix a lot of the medical requirements.
The NHS administration needs an 'Alan Bates' to put a rocket under them.

Sorry to sound off but that's how I see them.