Is there an overview of PC stuff anywhere?

Hi Static,

I'm not sure I have been given any 'letters' stating anything as yet, it's all been on the phone or just face to face?

CNS?

After the biopsy and CT scans I was called into my local Hospital and was given an overview of the results (16 samples, 4 contained cancer, Gleeson of 8) and then handed a wodge of booklets.

They did give me a business card containing 3 email addresses and suggested if I had any questions I should email the group (in case any one was busy) but I haven't had any questions as yet, or more importantly, questions I would like to be given answers to but would be unlikely to be given them.

Like (to the person who is trained, qualified and does this for their living ...), 'Ask me a batch of questions that YOU know are important / relevant, I'll try to answer the best I can and then YOU tell ME what the best solution is.

Like, if I was to rate sex over lifespan they should recommend I do nothing?

The way we saw it when I gave birth to our children was that my husband was there at conception and we both needed to be there for the births. 

He was an only child and had very little experience with babies.   He worked as a staff trainer so he was clueless about anything medical and as far as we were concerned he didn't need those skills because there were midwives and nurses being paid for that. Like most of his friends he said he wouldn't have missed it for anything.

When my first grandaughter was born, I was there with my son in law, but after being in induced labour for hours she was taken to theatre for an emergency c section. We were given the choice of her husband or me to go into theatre and I wouldn't have dreamed of taking his place. He was the child's father and needed to be there more than me. He was there for the next 4 that came along. I managed to be there for her 3rd, who was born at my feet on the living room floor with a  first responder and 2 paramedics looking on.  I wouldn't have missed it for the world.

When my father in law was admitted to the Hospice his GP came to visit and saw him trying to light his cig on the wrong end. He told him that it wouldn't do him any good, especially lighting the wrong end. I was shocked that he was allowed to smoke at the Hospice and when I mentioned it to one of the nurses I was told that it was too late to make any difference for him  so he couldn't do as he pleased.

It's all about what is important to us individually, quality over quantity or quantity over quality.

Hi Able

After the biopsy you end up with a set of figures that tell everyone where you are with the cancer.

Mine are : Gleason 9 (5+4) T3a N0 M0.  You should have these somewhere along with your PSA test results.

CNS = Clinical Nurse Specialist.

I hope this helps.

Best wishes - Brian.

"as far as we were concerned he didn't need those skills because there were midwives and nurses being paid for that."

Quite, that is indeed the hope. However we know that isn't always the case and as it turned out, wasn't the case in our case. My Mrs had given birth before so knew what it felt like but in this case it didn't feel right. He stressed with the nurses this was the case, as did her 'nurse' sister and eventually they took notice and she was rushed away for an emergency caesarian, something that might not have needed to be 'an emergency' had the 'skilled' midwives and nurses paid attention. It turned out our daughter had been stressed, defecated and was in big trouble.

As it happened I was in the hospital after dropping off her Mum to have some work done on her arm and so 'popped in' to the maternaty wing to see how things were and was confronted with her being rushed into surgery (where she was was without her sister or me), so went back to work.

But then I wasn't feeling paternal and we got married because the solicitor said it would be 'easier' when trying to pin down all the legal obligations / rights where children were concerned and we only did it then because her biological clock was ticking and so it was then or never (I'm a 'toy boy'). ;-)

I knew I would be no use to anyone if I was passed out on the floor so decided it safer all round to keep out of the way. ;-)

But then we are both practical people, putting such things over anything more idealistic or emotional. As you say, each to their own. We were also both Radio Amateurs and so I was able to talk to her in her bed over the hand held radio, when all the other mums and mums to be had to waddle to the pay-phone.

When my stepdaughter was in the hospice (also allowed to 'smoke') I asked a good mate why I was able to hold it together when others weren't. He suggested that 'Apatheia' might be my superpower and that people still needed to be driven around safely and they were relying on my for those things being done in the background. It was how I was able to help.

Thanks for that Brian,

Maybe I need to drop someone an eMail as the only mention I have of my PSA was after the first blood test I insisted I was given back in April? I'm pretty sure I've not had my bloods taken since? I've had three cannula (MRI and 2 x CT) and that's it?

Hi Able

The figures come from samples of the Prostate taken in a biopsy.  it may well be your diagnosis is from a scan only.

Ask for copies of all your test/scan results and copies of the letters sent from your consultant.  I believe in England you can get this on the NHS patient website too.  At the moment we can't get that here in Wales.

Hi again Brian,

That's spooky, I got a letter from UCH just now!

Oncological summary: GS 4+4, stage T2N0M0, cores 4/17 MCI, 11mm, volume of the gland 48cc, PSA 4.9.

RALP planning: right side nerve spare, MUL 19mm, tiny median lobe, early T3a.

Other imaging summary: CT scan and bone scan no mets.

What do I win? ;-)

Hi Ff,

I have access to my local GP Surgery info 'SystemOnline'?) but it only seems to cover those things that have been processed via them. There is one in April, "Referral out Hospital Fast track referral for suspected urological cancer..".

In fact I got a call from the doctors surgery the other day saying the Dr would call me later and when he did I had to bring him up to speed with all the tests I had had etc!

I'm not sure if I ever got access to my NHS patient records online. I may have needed a photo driving licence or passport and because I have neither ... ;-(

Hi Able

Your prize is to know what it all means:

* Gleason 8 (4+4) = Grade group 4 All of the cancer cells found in the biopsy are likely to grow at a moderate rate.

* T2 - The cancer is still contained inside the prostate.

* T3a - The cancer has broken through the outer layer of the prostate and hasn't gone "walkabout".

N0 - No cancer in the lymph nodes.

M0 - It's not gone "walkabout".

The PSA is low - All is well. - what more can I say - welcome to the club.

best wishes - Brian.