A confused daughter seeking clarity and support.

Hello LVA 

A very warm welcome to the Macmillan Online Prostate Cancer forum - I am so sorry to find you here. I am Brian one of the Community Champions here on the Prostate Group.

Let me say at the outset that looks on the face of it to be very shabby treatment from the hospital - please don't name and shame on here - so let's get moving for Dad.

The cancer pathway is 62 days from diagnosis to start of treatment but this is missed on over 60% of cancer cases so we need to find out what is going on here. 

First off dad should be under urology at the hospital and the diagnostic for Prostate Cancer is 

* A PSA Blood test.

* Sometimes but not always a DRE (digital rectal examination) (finger up the bum test!).

* An MRI scan and a Bone Scan.

* A Prostate Biopsy.

May I ask why he's been in hospital and if he's had any of these tests and if so do you have any results? I am wondering how he's received a diagnosis.

If you have the answers to the above we can move on and help - I hope things will become clearer.

Best wishes - Brian.

Hi Brian, 

Thanks for the introduction,

To try and put it as a long story cut short, he was unwell throughout November and then from Christmas Day onwards we saw a rapid decline. 

A lot of pain, unable to walk properly, grey/pale, struggling to catch his breath. 

He went to his GP who said it may be gallstones and ordered a blood test and ultrasound. 

Then got even worse so we took him to a&e mid Jan. They said his kidney function wasn't great, picked up from blood tests and they did a chest x-ray which showed fluid on his lungs. He was in a chair in a corridor for 2 days hooked to an IV for fluids because there were no beds on the ward available, then set home to wait for an outpatient CT. No medication given and again was further deteriorating prior to his CT. 

Thursday 23rd he had a CT and him and my mum asked for help whilst in there because he was so unwell (had to be helped out of the car, helped to walk anywhere, struggling to breathe). They looked at his A&E records, gave him antibiotics for the fluid on his lungs and wanted to call him back the day after for another blood test. 

Friday 24th at 10:00 he had a blood test and was sent home. 2 hours later he received a call to say his calcium levels were extremely high and they needed him to come back into hospital. 

He was put on a ward, with saline IV, they then mentioned cancer on the Friday evening and we were told they needed to do an MRI on his spine.

MRI held the next day and showed cancer cells in his spine, pelvis and breast bone. 

Monday 27th he picks up a nasty infection, they blue light him to a nearby hospital heamotologist department because they believe it may be blood cancer. 

Biopsy of his bone marrow in his hip was done on Tuesday 28th.

Thursday 29th he's better in terms of infection, the antibiotics helped. But then he gets a sharp horrible pain in his back and can't catch his breath.

Friday 30th I speak to the doctor and said this is a new pain, he's never like this, then they check his prostate. 15 minutes later a urology specialist comes in to say he has a PSA reading of 728 so they think it's prostate rather than blood but will wait for the biopsy results. They also added given the level of cancer in his bones from his MRI and CT they think it may be somewhere else as well. They give him 2 hormone treatment injections that Friday evening. 

He's moved to an oncology ward, biopsy results are then back on Wednesday 05th and we're told its prostate advanced to his bones but all questions will be answered and treatment will be discussed the following day.

Thursday 06th, were seen by the same person who has no answers and tells us he's being discharged and will need regular injections with his GP and to ask all questions at an outpatients appointment in 2/3 weeks time. His pain levels are better but we feel very in the dark and unsure what to do, and are told to keep an eye out for a list of symptoms. If any of these happen, we need to ring the cancer helpline.. and they're going to order a full body MRI. So it may still be elsewhere? We don't know the full picture still.

I called the Macmillan support line last night, honestly, you guys are FANTASTIC. I've got a couple of emails to send to some places to give my concerns. 

Good Morning LVA 

Thank you for your latest post - I am so sorry to read about dad's journey so far - it does look like 2025 hasn't been good at all for your family. My personal Prostate journey started with kidney issues - click on my avatar for the full story.

So with a PSA reading of 728 and the other symptoms presenting I am sorry to say you have been told dad has Advanced Prostate Cancer which is treatable but not curable. Here's a link you may find useful

UNDERSTANDING ADVANCED PROSTATE CANCER

The basics are that Prostate Cancer lives on testosterone - the hormone therapy he's been stated on will deprive the cancer of it's food - the testosterone - and stop it in it's tracks.

Once the cancer has stopped growing, the oncology team will decide on the next course of action to take. This will be decided at the meeting in a couple of weeks time.

I do hope this helps - please do come back to us with any questions. I understand this is all new to you and we as a group are more that happy to support dad, you and your family. no question is too trivial.

Best wishes - Brian.

Hi LVA that’s quite a journey to get a short distance.  As Millibob has said, once on HT hopefully the cancer will be in retreat for a while.  How long seems to be individual to each of us, but I was 6 years before the HT started to fail.  If you have any questions at all, there is a massive experience base on here to help.  Best wishes, David 

Thank you David, really appreciate you sharing your experience. All the best to you x

Thank you Brian, this has been really informative and I fully appreciate the time you've taken to respond. 

Take care x

Just to say wishing all the best and sending hugs

Hi LVA my husband was diagnosed with advanced prostate cancer which has spread to his bones,found by accident, if you click on my name you will be able to read his journey,  at the moment you will all be very worried and frightened once they have all the information the treatment can start.

All the best and your are right the wonderful people on here are very kind and helpful.