Husbands diagnosis

User

Posted 02 Apr 2016 at 11:39

Hi Yorkshire lass,

It's great to see your husband is doing well and psa coming down nicely.

His comment "I bet my Gleason score 10 is less now" I think ignorance for him at the moment is bliss. Bob used to make similar sorts of comments and I know he didn't expect me to answer then. It took bob a long time to come to terms with the reality of the progressiveness of the cancer. Maybe now is not that time. He will ask the questions to you/consultant/ or read on Internet when he is good and ready.

Bob just had cycle 4, doing ok. Side effects perhaps not so good but are manageable. Bob psa going up rather than down, a little concerning (updated on my own thread) but consultant says not to worry at this stage.

All the best yorkshire lass, you are doing a fine job supporting your hubby.

Lesley xx

User

Posted 31 May 2016 at 15:05

Hi not been on for a while but just wanted to know how some of you were after chemo had finished
The reason I'm asking is my hubbys had his last cycle in April then 3 weeks after he could stop the steroids
But he's not been active or anything he soon gets out of breath we can't even go for a walk he really gets breathless he has to stop to get his breath on some occasions he can't even speak as he's that short of breath just wondered if anyone after chemo had symptoms of this
Also his feet swell up like balloons he's also got pain when he lifts his arms up to do anything
He got a appointment for a PSA test and then a oncology app next week so will mention this to him and he's booked in for a CT scan in July
I'm just hoping that all this is down to him having chemo as I know it takes a bit of time after to feel a bit better
Yorkshire lass

User

Posted 31 May 2016 at 18:38

hey up

as my nurse said to me your bodies just been bombarded and it needs time to recover, not had as many after effects as your hubby, but am always short of breath somedays more than others, and suffer more now with hot flushs

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 23 Jun 2016 at 14:22

Hi just a update on hubbys crusade
Last chemo was end of April then had a follow up appointment 6 weeks after with oncologist he was very pleased with how chemo had gone his PSA was right down to 0.3 and the CT scan which was booked for July he said they wasn't any need for him to have it as he said they wouldn't find anything different from the last one he had but for piece of mind we still going for it
Oncologist said I don't expect to see you here for 2 to 3 yrs so he has been referred back to urology where he goes for PSA check every 3 months plus his hormone injections
He has now started back at work after been off for 6 months he's tired when he gets home legs & feet swelled but he feels so much better in mind been back at work he's feeling really good at just getting back on track so fingers crossed
Yorkshire lass

User

Posted 23 Jun 2016 at 15:29

Lovely news Yorkshire Lass, thanks for the update

Long may it continue

We can't control the winds - but we can adjust our sails

User

Posted 23 Jun 2016 at 16:19

That's fantastic news, it is so good to read when the treatment works like it should, fingers crossed for good results moving forwards

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 23 Jun 2016 at 17:02

Wonderful news! Long may it continue.

Rosy x

User

Posted 23 Jun 2016 at 17:56

How lovely - enjoy the respite Yorkshire Lass

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

User

Posted 23 Jun 2016 at 18:05

Great news about your OHs treatment! My hubby starting chemo in a couple of weeks hope it's a similar outcome.

Take care

Debbie x

User

Posted 23 Jun 2016 at 18:55

Well thank you all for the lovely responses
It is good news for him especially as he got a worrying outcome when diagnosed so let's hope it continues for a few more years
Thank you all
Yorkshire lass

User

Posted 23 Jun 2016 at 19:22

Great news and outcome! Well done to both of you.

User

Posted 23 Jun 2016 at 21:51

Really pleased to read your latest update, long may it continue!

Lesley xx

User

Posted 25 Feb 2019 at 17:35

Well it’s been a long time since last post but hubby been quite well apart from last year my husband suffered a heart attack followed by caradic arrest wasn’t feeling well that morning so took him straight to hospital for a check as we got to A& E that’s when it happened sp we were in the right place at the right time and they saved his life so from July last year to now he’s never felt as good they put him a stent in he said he feels like a new man he tried to put his prostrate cancer behind him had a PSA test done when he came out of hospital which was 0.9 then had another one done in January and it’s shot up to 2,2 so now we worried about the big hike up hospital are going to repeat the test in 4 months instead of six to see what it is then we just hoping it’s a blip from the trauma he sustained as he doesn’t feel unwell or in any pain at all I know it’s a long shot but has anyone felt well and psa shot up just worried

Yorkshire lass

User

Posted 25 Feb 2019 at 18:32

My surgery was nearly 4 yrs ago. I feel totally normal I guess and everything working. My psa continues to double every 12 weeks and is now over 82. And I have a really busy job , painted the outside of house last few days etc etc ...... but something growing within :-((

But yeh you can feel fine with psa rise

If life gives you lemons , then make lemonade

User

Posted 25 Feb 2019 at 18:46

Hi Yorkshire lass,

do they test his testosterone when his PSA is checked? If not, try to get that added to the next blood test as it helps to show what might be going on.

If he is still on Prostap, his testosterone should be at 0.69 or below - this is called castrate level. If his testosterone is above that point, the HT isn't working very well and they may try a different one or perhaps add Casodex (bicalutimide) to disguise the extra testosterone that is floating around. The other reason that testosterone might rise (temporarily) is if the last Prostap injection was from an off batch, was injected wrongly, stored incorrectly or the wrong dose given (it has been known for a nurse to accidentally give the one month dose rather than 3 month dose) - the hospital probably wants to wait for that next PSA test just to confirm that it wasn't a one-off blip.

If the testosterone is below 0.69 and the PSA is rising, that means the cancer has learnt to live without testosterone in which case they will probably suggest a different hormone and/or perhaps chemo again.

Great to know that he is feeling so full of beans after such a scare last year.

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

User

Posted 25 Feb 2019 at 18:52

Thank you Lyn for reply no he never has had the testosterone test just psa we will mention this in May on his next check thank you so much

User

Posted 25 Feb 2019 at 20:51

Do you get a print out of his results from the GP practice? It might be that it is done but not mentioned? Or ask the nurse to add it to the next bloods taken for PSA - once you get to the appointment it will be too late to add it.

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

User

Posted 01 Apr 2019 at 16:08

Just wondering if anyone has got or had travel insurance for metastatic prostrate cancer how much paid as we’ve gone into it and been quoted for a single trip in between £500 - £700 and for a multi trip £1500 couldn’t believe it if it wasn’t metastatic then it would be quite a lot less

We actually been on holiday without thinking about extra insurance but it was someone’s friend in family that had a bad fall while on holiday with prostrate cancer that had gone into his bones and because he didn’t tell them of his cancer and taking extra ins out it was voided so when you claim for medical assistance they must be able to see you’re medical records

Yorkshire Lass

User

Posted 01 Apr 2019 at 16:15

Depends where you are going - cover for the USA is a lot more than for the rest of the world. You also need to shop around - Macmillan has a section on their website listing companies that are particularly good at offering travel insurance for people with cancer. We have stuck with Insurewith ever since John was first diagnosed.

There is also something about the way some people answer the questions that seems to lead to higher quotes. For the time being, your OH has metastatic cancer that is controlled just with hormones and you are on 6 monthly appointments, I think ... that should bring the price down a bit in comparison to someone that answers that they are are on palliative care or frequent appointments.

Edited by member 01 Apr 2019 at 16:19 | Reason: Not specified

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

User

Posted 01 Apr 2019 at 16:17

This thread about travel insurance may be of interest:

https://community.prostatecanceruk.org/posts/t16218-Does-PCa-affect-travel-insurance

It is absolutely essential to tell your insurer about the condition.

Edited by member 01 Apr 2019 at 16:19 | Reason: Not specified

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