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New and would love some advice please

User
Posted 12 December 2017 14:08:28(UTC)
Hi all

My husband has been diagnosed with stage 4 prostate cancer and Gleason score of 9. He's on hormone treatment and due to start chemo after Xmas. I've been trying to find out what the future may hold but can't find anything that gives me info about both stage and score can only find one or the other. Any help advice really appreciated as I don't know what to think or how to feel at the moment
User
Posted 02 January 2018 17:45:49(UTC)

We all want to know prognosis - but as a nurse, you know that no honest doctor can pin down a prognosis, and an increasing number of oncologists won't make that guess. Because that's what it is, isn't it? The surgeon's estimate was wide, which was sensible of him.

I know it's hard - believe me I know! - but it's important to concentrate on living life as it is, not counting days.

If your husband is finding it hard to come to terms with all this, it may be worth going to the GP together. I'm assuming he knows the GP here! the GP has access to all the details and may be able to get through where white coats couldn't.

If that doesn't sound like it would help, I'd repeat the advice Graham61 gave: speak to a specialist nurse either via PCUK, or your local one. As well as being knowledgeable, they'll likely be able to offer more time - maybe over several sessions - that most consultants no longer can.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
Thanked 2 times
User
Posted 03 January 2018 07:11:46(UTC)
Hi Gill
When I was first diagnosed I was told maybe only 2 years possibly 10 but don't think 10, but with hope 3 to 4.
I therefore thought 2 and after a couple of months of emotion decided that it will be what it will be.
What became important was to live for each and every day because if it's 2 or 10 a wasted day is a wasted day.
If you have £2 or £10 you would throw neither away but look after the cash and spend it well, I am trying to do that with my life.
So I am here still 3 and a bit years on, I have had a few set backs but I have had a ball, the £3 I have had so far have been spent to feel like £1,000 and before diagnosis I only ever thought I had £50 so I feel lucky in a bizarre way.
Today is monthly blood result day so that could be a game changer as ever but whatever it is it can't take away my last 3 years.
It is only natural to have the thoughts you have but if the doctor says 12 months or 60 months surely today is today and it should be spent well if you can.
At the end no one looks back on their life and says "I wish I spent more time worrying and less time having fun'
Keep posting, there are lots of people here for you
Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
Thanked 1 time
User
Posted 03 January 2018 07:47:20(UTC)
Well said Kev. Good luck today.I am also having bloods today to see if my liver function is now low enough to go back on the abiraterone albeit at a half dose. You know that your prognosis was identical to mine? Worst case 2-3 years and if all goes really well up to 10 but with the caveat that new treatments come along all the time. I agree entirely with your philosophy as well but it doesn’t stop me worrying at least a little, particularly in the dark of night while I lie awake
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User
Posted 12 December 2017 17:41:18(UTC)

Hi Gillp21
it doesn't really work that way except to note that the G9 is the probable reason that it has spread from the gland. Have you got the results of the MRI and bone scans? Usually written as N0M0 or N0M1 or similar? Also, is he G9 (4+5) or G9 (5+4)?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 12 December 2017 17:49:40(UTC)

Hello,

I wonder if you would find it helpful to talk to the specialist nurses at PCUK here, they are well informed and very helpful.

The number is 0800 074 8383, I think it is option 1 to speak to a nurse.

They can send you the ‘Toolkit’ of booklets which are a good source of information.

Best wishes, G

User
Posted 12 December 2017 20:23:49(UTC)

Hi gillp21
My husband was diagnosed in March this year with a PSA over a thousand and extensive bone mets, his Gleason score was 8 (3 + 5)
Treatment has been Hormone Therapy and 6 sessions of Chemo. He has continued to work during most of this time. Please do ask any questions about this and I will share our experiences. It has taken over our lives for the past few months but hope we will at least have Christmas without hospital appointments. We did find it easier once treatment started as the thought of Chemo was quite scary.
Best wishes

User
Posted 02 January 2018 17:15:53(UTC)
Hi

I haven't been on for a while because yes it took over our lives before Xmas. He was due to start chemo on 8th but this has been postponed as he has to have Hep B vaccination first. It's stil due to start in January but don't have a date yet. I feel as though we have lived at the hospital and although they have been amazing I am not getting the answers I need. I know there are no hard and fast answers to any of this but get told 12-18 months by urology consultant then the oncologist is refusing to discuss prognosis.
This is the part I'm finding difficult to deal with, we know its palliative chemo and the hormones have reduced his PSA which is brilliant but he still seems to be ignoring what is happening and it may be his way of coping but I find this so hard.
I am a nurse although not practicing and have seen this so many times so that may be why I'm struggling now. I am trying to focus on the positives but need to know worse case so in my head I can prepare for that. This probably sounds awful but I think I'm more scared than he is.
I'm sorry if this sounds all wrong but find it so hard to explain all of this

Gill
User
Posted 02 January 2018 17:45:49(UTC)

We all want to know prognosis - but as a nurse, you know that no honest doctor can pin down a prognosis, and an increasing number of oncologists won't make that guess. Because that's what it is, isn't it? The surgeon's estimate was wide, which was sensible of him.

I know it's hard - believe me I know! - but it's important to concentrate on living life as it is, not counting days.

If your husband is finding it hard to come to terms with all this, it may be worth going to the GP together. I'm assuming he knows the GP here! the GP has access to all the details and may be able to get through where white coats couldn't.

If that doesn't sound like it would help, I'd repeat the advice Graham61 gave: speak to a specialist nurse either via PCUK, or your local one. As well as being knowledgeable, they'll likely be able to offer more time - maybe over several sessions - that most consultants no longer can.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
Thanked 2 times
User
Posted 02 January 2018 19:14:10(UTC)

You aren't really giving us enough information to be able to help. It depends on things like where the spread is - if it was in his liver, 12 - 18 months would be optimistic. If it is in his lymph nodes we have members who are still here 10, 12 and more years later.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 03 January 2018 07:11:46(UTC)
Hi Gill
When I was first diagnosed I was told maybe only 2 years possibly 10 but don't think 10, but with hope 3 to 4.
I therefore thought 2 and after a couple of months of emotion decided that it will be what it will be.
What became important was to live for each and every day because if it's 2 or 10 a wasted day is a wasted day.
If you have £2 or £10 you would throw neither away but look after the cash and spend it well, I am trying to do that with my life.
So I am here still 3 and a bit years on, I have had a few set backs but I have had a ball, the £3 I have had so far have been spent to feel like £1,000 and before diagnosis I only ever thought I had £50 so I feel lucky in a bizarre way.
Today is monthly blood result day so that could be a game changer as ever but whatever it is it can't take away my last 3 years.
It is only natural to have the thoughts you have but if the doctor says 12 months or 60 months surely today is today and it should be spent well if you can.
At the end no one looks back on their life and says "I wish I spent more time worrying and less time having fun'
Keep posting, there are lots of people here for you
Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
Thanked 1 time
User
Posted 03 January 2018 07:25:31(UTC)

Good luck with today's blood test Kevin.

Fingers crossed for you

We can't control the winds - but we can adjust our sails
User
Posted 03 January 2018 07:47:20(UTC)
Well said Kev. Good luck today.I am also having bloods today to see if my liver function is now low enough to go back on the abiraterone albeit at a half dose. You know that your prognosis was identical to mine? Worst case 2-3 years and if all goes really well up to 10 but with the caveat that new treatments come along all the time. I agree entirely with your philosophy as well but it doesn’t stop me worrying at least a little, particularly in the dark of night while I lie awake
Thanked 1 time
User
Posted 03 January 2018 21:23:39(UTC)
The cancer is stage 4 with Gleason 4+5. It is in his skull, thoracic and lumber spine left hip pelvis and shoulder blade. It is also in pelvic lymph nodes bowel and liver so has spread a long way. It went in one month from nothing in the liver to being there at the next scan.
We have seen the McMillan benefit advisor today which had been helpful as at least we know what is available once we need it.
My husband has never talked about or shown emotions in any depth and I think this is just the same. When we see drs etc he laughs and jokes so I know he won't talk at this stage, maybe later once chemo starts and reality hits then he will.
I am grateful for any info or just to chat as he won't talk so it's good to hear others thoughts feelings and experiences

Gill
User
Posted 03 January 2018 22:17:21(UTC)

Perhaps laughing and joking is his way of protecting you Gill, playing it down.

There will always be somebody on here to chat to, even though some of us (~well, me for a start) can't supply info that you'll need, but a listening ear is there, ready and available.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 03 January 2018 22:38:06(UTC)

The fact that he was willing to meet the Macmillan adviser is a good sign although it must have hurt him so much to be having that conversation. The best indicator you will get is to carefully track the PSA - how quickly it falls and how stable it remains - and also to keep a close eye on his testosterone and ALP levels.

I wonder if the oncologist is cagey about prognosis because he senses that your husband doesn't really want to know? I think some medics are much more rigid than others about patient info v relatives wanting to know.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


 
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