Stage 4 prostate cancer rapid deterioration last 3 weeks

Hi, mine is stage 4, I'm 49, fit and healthy at mo.

It's in my pelvice.

when I feel the bone pain, its in my right seat bone and top of my right thigh.

Not sure on your age group, but I can't not think about it and worry when the pains there? I don't like troubling any one

What I'm learning is, as good as the NHS, the people and the services are.   They are over run and personally believe if I'm worried about something I have to push and put my self in the picture.

Because if not, I will not get any help.

You can pray that the right thing happens, you can have faith in the right thing happening.

But those 2 alone without action will not help?

Hi JuCa

My husband has advanced pc and bone mets (77),  We hadn't seen a consultant for over a year but he started getting pain in his right upper side and in the base of the spine.

I decided to speak to an Oncology nurse and as I had mentioned spinal pain, they asked us to go in the very next day.  They worry about spinal compression.  This would need to be sorted quickly apparently.  We were in the next day and he had an MRI scan AND a contrast CT scan plus the usual obvs and blood tests.

I was amazed at this sudden MOT and whilst it was not spinal compression, it certainly got us seen very quickly and now we know that things do not seem to be much worse.  His PSA was 1180 and now 3.4 which they are pleased with.  Had it not been for me phoning, we would still be sitting here wondering what was going on with him and if the cancer was spreading.  My motto is be proactive. 

The hospital were wonderful and after waiting for 7 hours in Oncology for the scans and tests, they found he was dehydrated and kept him in for two days on a drip. Something else we would not have known about had we not gone in. The specialist nurses were so kind and whilst I was waiting in the consulting room, they brought us coffees, biscuits and even gave me a sandwich for my lunch.

If you don't ask, you don't get.  It maybe worth a row with your husband in order to get him seen.  They will not call you in unless you tell them there is a problem. You are suffering very much too as I am.  Seeing your husband in pain is awful but be firm with him.  You need to know how things are and yes they can help.  My husband now has patches which we change each week which will help with pain control plus the usual paracetamol when it doesn't work.

Hope you get him to an appointment, even if you have to exaggerate his symptoms.  It will put yours and his mind at ease.

Go for it - nothing ventured, nothing gained (except maybe a few cross words).

Best regards

Gina

Hi Gina, 

thank you for replying to me and yes I think you’re right - we are going to phone the Oncology dept tomorrow and I’m not going to rest until he is at least seen.

Thanks again

Julie

Thanks so much for your reply.

Following yours and Ginas replies I’ve convinced my husband to phone the Oncology dept tomorrow and push to be seen ( hopefully we may not have to push)                        Thanks again 

Julie

Hope you guys are ok.

More so you Julie, I've been with my partner 4 years and very aware my diagnosis has ripped our hopes and dreams apart.

She's been so supportive.

Your husband probly knows his body, he may not say much sometimes but will feel the fear...

If your able find a cancer support group where people meet?

Prostate cancer UK have some real life meetings.

Rail road him into one and leave him for one.

Maybe a cupper and men who can relate may help???

Also get him out your hair for an hour and maybe it help share the weight of.....

Hi, 

thanks for that. I will try to get him to speak to someone and leave him to do it on his own.

I’m ok - I talk about my feelings to him and I have a close friend to talk to. It just rips me apart to see how it’s affecting him but tomorrow we’re at least phoning the oncology department and take it from there.

Thanks again

Julie

Hi JuCu, I agree fully with what you have been advised to do, I've never seen my oncologist since being passed on from the urologists in march 21, it's difficult to get there 2hours travel for a 10 minutes meeting.

I think that you ladies are wonderful, you have to put up with the changes to life style, worry about losing us and listen to us moaning Minnie's, you all deserve everyone's admiration.

At the end of my last phone appointment the oncologist said to my wife, you are a relervation, but shy girls get nowt.

So go for it Julie, All the best Ulls 

Thanks for that - all of the replies have given me the confidence to make sure we phone the Oncology dept today and I will push for whatever I believe my husband needs, even if he won’t.

I love your comment ‘Shy girls get nowt’ - it’s so true!

I have never been so scared in my life right now, so God knows what my husband must be feeling, so I’m going to try and get him to talk to someone as well - I know the physical pain is bad, but so must the mental pain be.

Thanks again

Julie

Being scared is the problem it blanks your mind out and you just don't want to know.

I knew I had cancer December 20, diagnosis in January 21 told by urologists I had 6 to 24 month's if I was lucky.

A death sentence, mental I was no good, my first phone appointment with oncologist my wife mentioned the life span, he said absolutely no way I've been treating patients with your type of aggressive Cancer for years, if you're husband dies within the next 5 years it won't be because of the Cancer.

My point is that you are both at the beginning of the journey, there are lots of positives to look forward to.

All the best Ulls 

Hello Julie

Getting to the stage your husband is at, he’s probably feeling it’s the last throw of the dice, nobody wants that it’s a terrible feeling.

My wife is dreading the moment they say, they cannot do any more, it would break her heart. Even now she can see I’m much slower in pain a lot more, but I just go with the flow, I know it’s going to happen at some time, I just cannot bare the thought of my wife seeing me.

It may be the same in your husbands case. I’ve said this a number of times, although it’s us with the disease, it’s family that see what’s happening on a daily basis, without wives, partners and family, we would be lost. My wife does all my meds for me, programming Alexa to tell me when to take them, plus comes everywhere with me. You ladies are wonderful how you keep doing what you do.

Stay safe 

Joe