Please help me understand my husbands PSA increase and diagnosis

Hi Gwen (GwenJ ), it is all so confusing at the start but we have all been in your position.  Don’t worry about coming back on here to ask anything.  None of us are medically trained (in this field anyway) but we share a common link in PCa and can give you our experiences, which usually is way better than reading a generic leaflet.  Once on the HT there is no immediate panic but your OH’s team are on the case.  Try and avoid delving into Google but use PCUK or MacMillan for accurate info.  We are with you.  David

Thank you so much for this message ! X

The advice others have given about diagnosis and treatment is good, so I'm not going to add to anything about that. One point I picked up though is your husband's initial confusion in what he was told on the phone. It is confusing and I think that would happen to most of us. It can be very helpful to have a third party (you!) on the end of the phone or at the hospital with him as a second pair of ears. The medics will be happy to arrange that and you will be able to support him better. 

Just an update and question although I appreciate this mat be tricky to answer - my husband has seen a urologist who has ordered some more tests on his kidney (seems to be just to rule out the cancer having spread there so feel hopeful) - in the meantime he still hasn’t seen oncologist - urologist confirmed Gleason score 9 and spread to bones and seemed to think it was a complex and serious case but wasn’t able to say anything at all about treatment options. I have read that some treatments (chemo/another hormone treatment/‘triplet’ treatment) have to be started within 12 weeks of starting the first hormones so I’m a bit concerned about the wait for an oncologist- husband seems to think it could be in February. Should we be chasing the hospital to speed this up even while kidney investigations going on or is this something they will have considered? On the one hand want to trust the process but also people have said you need to push for things. Don’t want to lose chance or reduce effectiveness of any treatment options because of delay.Any advice or experience deeply appreciated . 

Good Evening Gwen (GwenJ) 

Your post rings many bells with me - I was admitted to hospital with kidney failure and ended up being a Gleason 9!! (have a read of my profile by clicking on my user name or avatar).

My advice to you would be to be politely pro-active:

* If you live in most parts of England if you have the NHS App you can request FULL access to your medical records - this well help you find his test results and medical conditions.

* If you can find it (or check with his GP on his last bloods) his eGFR - kidney function should be 60+ - if it's lower then there's an issue there. (simple blood test).

* The cancer pathway sets out targets for cancer treatment in the UK - here's a link to a guide issued by one of the London Hospitals:

The Cancer Pathway

* If you feel you are outside the 62 days - the first port of call is your hospital PALS (Patient Advisory and Liaison Service). Tell them it is the cancer pathway and the delays are causing anxiety - can you have an earlier appointment.

* If you have an appointment or know where you are being sent - contact them and tell them you are available to take any cancellation at short notice. (You would not believe the number of folk who cancel and appointment).

I do hope the above helps - if I can do anything else for you please do get back to me.

Best wishes - Brian.