LH level <0.1, Serum test for testosterone 0.7

Hey Brian , out attitude is if we ask as it’s about our lives we should be involved . In my OH’s MDM  meeting the surgeon “THINKS” really doesn’t sit well with us . So at that point I would have interjected. 

Hello johnam 

I agree with you. The plan at my MDT meeting was HT for life as my urologist saw a "shadow" on my Pelvis which with an initial PSA of 182 indicated the little sods had gone walkabout.

11 Months later (after waiting for a TURP operation) my Oncologist said she "wasn't sure" but would blast the shadow at the Radiotherapy stage, reduce HT 3 years and call it a "Curative Pathway".

At the start of my journey I never questioned anything - now I am in control and indeed a few months ago my GP knowing my Prostate Cancer knowledge was better than his said "Well Brian how would you deal with this".

If we have the knowledge - we can challenge treatment choices but as it stands it's after the MDT meeting - the problem most of us don't know and being at the MDT meeting we probably wouldn't have known what was being discussed and that there were alternatives.

On another point I have full access to my NHS Records and at one point during my emergency treatment a junior doctor was going to diagnose a UTI and send me home - my wife is a nurse with 40 years on A & E - after she asked him to "think again" they kept me in hospital and I am here today.

I will stick up for the NHS but we all have to be pro-active and knowledge is power.

Best wishes - Brian.

Good Morning Brian , Totally agree , the whole issue around MDM meetings is they really don’t want to you to hear what’s going on so they can continue the route of playing “god” . That’s my feeling here after the attitude of being told it’s curable then it’s not. I’m getting prepared for next Thursday so have my next list of questions and will see if I’m sent to the naughty step again . 

Good Morning johnam 

I am with you 100% here and I hope your get your Consultant sorted - they need to realise they are not gods and they are dealing with human beings with feelings.

My wife was in ICU in 2022 and I asked to see her consultant, I was told if I came in he would see me if he had time but I may have to wait a number of hours before he was free. I returned the message with "you are not a god and you will be seeing me". My wife's treatment was stalling and in the end I had to use my MP to get things moving - at that point the Consultant rang me to ask what time he could see me!!

Off the Community I am working with Macmillan staff and other members of the cancer Community to try and improve patient care and their cancer care through a project called "Lived Experience" - we hope this will go live in 2025 and help people like you to navigate the cancer pathway. MDT meetings are part of the project.

I am with you on this journey and I wish you both the best for next Thursday.

Best wishes - Brian.

Brian, the project sounds interesting and anything to empower patients seems good to me. I know you have mentioned loads of times about getting full access to your own records.  In my area (Southampton/Winchester) I can view blood results in the NHS App, if organised by my surgery, but hospital bloods don’t get loaded.  Same for any communication from my Oncologist which I can’t see, but appointments from cardiology get onto my record.  I have spent hours going round and round with ‘IT’ and the nearest I get to an answer is that not all departments are connected. If this is correct it may limit the lived experience for some.  I may be alone in not being able to get full access but I do find it frustrating.  I wonder if this is just me, a local issue or a National problem.  David

Hello David (David2017) 

The NHS App is great, where it works, not even in the devolved Nations or all Health Authorities. I can only advise people to get it and use it if they can.

During my journey I have been under My GP, Northern Care Alliance NHS Trust, Manchester University NHS Trust and The Christie NHS Trust!!

Manchester University Trust use a system called "My Chart" which is great (I know some other health authorities use this too). It's a great system but it doesn't "talk" to the NHS App.

On my personal journey I spent some 10 days in Hospital, admitted to The Royal Oldham and transferred to North Manchester General (two different trusts). I went from Oldham with a file full of paper notes to North Manchester to be greeted with - "oh! you are from Oldham, all our records are online, we will have to load that lot onto our system!!".

Yes - records are very much a National Issue - I only moved about 6 miles but went from one trust with paper records to one trust fully online!!

We have great hopes for the "Lived Experience" project and hope next year to connect everyone with a new cancer diagnosis to this project and it should enable them to manage their own journey better - it's being written and produced by both the full time Macmillan staff and those of us who have "been there - done that" and the final version should be available next year.

Thanks again for your continued support on the Community - you make my job easier!! .

Best wishes - Brian.

Brian, it sounds like the NHS has a complete hotch-potch of systems, but maybe it will all get linked at some point.  I  wasn’t looking forward to my Zoladex jab today after my last one (which I think was my 30th is that a record?) which hurt like hell going in and for about a day, but todays jab was back to normal.  It’s a good day, with great news from AH.  Happy Birthday.  David

Millibob said:

knowledge is power

Well said - I couldn’t agree more.    AW

johnam said:

and will see if I’m sent to the naughty step again

I’ll make room for you    AW

Hello David (David2017) 

That's some going 30 HT injections, it shows the HT treatment works. On a personal note I have had my last HT injection and I am now only on 6 monthly PSA checks!

One day we hope the NHS will have "joined up" communications - we live in hope.

And yes - 69 today - I don't feel it but........life goes on!!.

Best wishes - Brian.