Inconsistent information

Hello ansteynomad 

Sadly the diagnostic part of this journey is the hardest part to endure. I soon found out the best way of keeping track of everything was to keep a diary of everything that was said - names and telephone numbers and e-mail addresses for anyone I came into contact with. (This is the basis of my profile - without the contact details - click on my name or avatar to read it).

If you are now 9 weeks from first contacting your GP and you don't have a date for an MDT meeting or start of treatment I would contact your hospital PALS (Patient Advice and Liaison Service) PILLS in Scotland and ask them to chase it up for you.

T3aN1 - shows that it's not left the gland and is in at least 1 lymph node potentially curable - I am a T3aN0 but because of a "shadow" on my pelvis on my MRI my pelvic lymph nodes were blasted at Radiotherapy as a "bib and braces job".

As you travel this journey although Prostate Cancer is normally slow growing your diagnosis can change and it depends on your team how good they are - my urology consultant put me on Hormone Therapy from Day 1 even before any MDT meeting.  11 months later when some "chips" were taken from my Prostate during A TURP operation I was "upgraded" from a Gleason 7 to a Gleason 9!! .

What you need is a formal diagnosis in writing and your team to get together at an MDT and come up with a treatment plan - it's not to much to ask to keep you in the loop.

I hope my ramblings help - if I can do anything for you or you have any questions, fire away.

Best wishes - Brian.

We are nine weeks from referral. The first GP appointment was some two weeks earlier but he had to get bloods done and he had to get bloods done and there was another appointment before referral.

Diagnostics were completed with the biopsy on 7 July. Results will take 4 weeks, so we are not expecting to go to MDT until something like 8 August earliest and to have an appointment some time after that. Hopefully at that point we will have a definitive diagnosis and a plan to consider.

We have a timetable of sorts and I don't think there is anything to chase up sadly. It should be 28 days from referral to diagnosis or all clear per the hospital website, but it is likely to be something like 14 weeks for us and I know that is quicker than many people are getting through the system at this hospital. 

He has had no prostate symptoms throughout and actually went to the GP originally about something else, which they will not deal with now because they have referred him to the hospital and its that which is adversely affecting his quality of life at the moment.

Hello ansteynomad 

I am so sorry to read what has gone on.

ansteynomad said:

He has had no prostate symptoms throughout and actually went to the GP originally about something else, which they will not deal with now because they have referred him to the hospital and its that which is adversely affecting his quality of life at the moment.

He is under urology at the hospital - anything else the GP practice should be dealing with under a "shared agreement" with the hospital. If no one will take responsibility for his other issues heads should roll.

I would start with the GP Practice manager - you can't just not deal with an illness. I had these issues myself - a meeting with the GP practice manager sorted it.

Best wishes - Brian.

Bit surprised the junior doctor gave you a diagnosis before a biopsy,  had you had a bone scan at this point, if not I would be more inclined to take the second diagnosis you was given and wait till he sees his consultant.  I know the worst part is waiting for the meeting to discuss findings and a treatment plan. Myself after internal examination then urgent MRI , only information given was there is something showing on your prostate,  then a quick biopsy arranged and taken then a 6 week wait, I was already resigned they would find cancer. But at no time was I diagnosed until the consultant had results then appointment with him to discuss findings and treatment path. Glad to say all my treatments have been successful and in remission from stage 3 with 2 growths.  Good luck and hope all goes well, stay positive 

Hello Ansteynomad, might I suggest you contact your hospital PALS service and/or the urology services manager at your hospital and ask for clarification? Given your pseudonym, I am wondering whether you are based in Leicestershire and using the Leicester hospitals? ( there’s a village called Anstey in Leics) if so, we had an awful time getting through Leicester urology and diagnostics but oncology was brilliant. This was almost 3 years ago and we did end up making a formal complaint.

No longer in Leicestershire, hence the Nomad bit (and a pun on the name of Anstey's football team). 

DH won't be interested in doing it, but I think I might make some calls next week in the effort to clarify the position if we can.

Hello Ansteynomad, it fell to me to do all the polite assertiveness’ to get through the diagnostics. I was exhausted by the time we got there and had a treatment plan etc. my concern is for those people who don’t have anyone to do this for them. I hope all goes well!

So I called PALS, but they won't talk to me without a signed authority from my husband and a form completed to say what the issues are. It's going to take a couple of days to sort that out.

Like you Worriedwife I feel for the people who have no support.

Hell ansteynomad 

I have spent may hours last year along with about 16 other Macmillan Volunteers on a project call "The Lived Experience".

Once it's finalised it hoped we can give a copy to everyone diagnosed with cancer. It's all about our own experiences in dealing with delays and how to advocate for yourself.

It's a minefield out there as every NHS Trust is run differently.

Good luck with your own progress.

Best wishes - Brian.