Dad just diagnosed with advanced PCa

User

Posted 05 Jan 2016 at 18:03

My dad has just been diagnosed with advanced prostate cancer and I'm hoping there is someone on here to offer advice.

My dad mentioned to his GP in December that he was having to run to the loo, so GP ordered a PSA test.

PSA was 260, so urgent referral to urology who confirmed after a quick exam that it was prostate cancer, put him straight onto HT and ordered biopsy, bone scan and CT.

Bone scan and CT were done just before Christmas, biopsy is next week. After the bone scan the radiographer told my dad to be careful with his right hip so we knew it was going to be bad news.

We were called in to see the oncologist today. Extensive spread in bones (no surprise) and also probably spread to liver. He wants to start early chemo but he wants more investigations on the liver first (MRI in the next week)

I thought I had read everything and I was prepared for this (I say I, and not he, my dad, because he just thinks everything will be fine. My mum didn't come to the appointment because she can't face it)

My question is, if anyone knows, if the HT is going to work for a while, which the consultant is confident of, could it also do its job on the cancer in the liver?

Sorry it's so long

Natasha

User

Posted 05 Jan 2016 at 20:12

If and when dad does get chemo you will need to alliow around 2hrs for the treatment
If you go by car and dad drives some find it ok to drive home after
Any treatment midday i would suggest taking in some sarnies
My week when i have chemo is bloodtest monday which includes a PSA test
Tuesday hospital for chat with onco get result of PSA
Thursday hospital for chemo they give you a log book and write in all bloodcounts
You can add the PSA test yourself

run long and prosper

'pooh how do you spell love'

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

User

Posted 05 Jan 2016 at 19:23

Hello Natasha and welcome to the site.

I wont offer advice re the chemo as I don't have that knowledge but I just want to reassure you that there are others on here that will be able to offer advice so please wait around until that happens. I am sure that somebody will be able to comment for you.

It's good that you go with your dad (and that he lets you). Two heads are always better than one when taking in information. Don't ever be afraid to ask the consultant anything relating to dad's treatment, assuming your dad wouldn't mind.

Similarly, please don't hesitate to ask on here as we always try to help if we can. We are here for you and your mum and dad. Prostate cancer is a very hard thing to take in but you will get your head round it eventually.

There is something called "The Toolkit" here on the site, available form publications. There may be something there that might help or there are always the specialist nurses here on the site who can answer queries for you.

Best Wishes
Sandra

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

User

Posted 05 Jan 2016 at 19:24

This is from my own experiance

Like your dad i have bone mets in my right hip and pelvis but no liver cancer

The HT will control the testosterone

which feeds the cancer so that the growth and spread will slow down it will also help lower his PSA levels

Early chemo is the latest treatment to run along side the HT which i am also having have had 5 of 6 treatments

The extra MRI scan will help with decisions i had one for my liver as CT scan showed a leision but turned out to be a large blood vessel so heres hoping for your dad

They will tell you all about possable sideaffects when the time comes for chemo it affects us all differently

The HT treatment will proberbly change your dads emitional state

You say that you have read loads hopefully not to much from google

Make constant notes on every visit write down questions in time dad and mam will want to know more and you may stuggle to remember we have built up a file ask for copies of all your dads tests

What was your dads gleason score

Ask them about his staging

The HT will help for a long while

Hope some of this helps

Regards

Nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 05 Jan 2016 at 23:01

Hi Natasha
I too cannot answer on Chemo as I've not get there yet.
I was diagnosed 12 months ago with psa of 235 and spread to pelvis. This meant no operation to remove the prostate.
I started on HT and have been on prostap and enzalutamide since then. Apart for some mild side effects it's so far so good. My bloods and psa are due to be checked again next week.
HT does work initially but for how long it depends on the individual
I keep fit with running and hiking and changed my diet to organic food, no red meat or dairy , minimal sugar. I'm convinced that keeping fit helps both with fighting the cancer and also fighting any emotional states and side effects.
I don't do much alcohol just the odd red wine and do try to look after my liver and immune system.

There are others with more experience on bone Mets and chemo and I'm sure they will reply yo you soon.

I hope this helps and hope your Dads treatments work out ok.

Best Regards
Paul

User

Posted 05 Jan 2016 at 23:08

Hi Natasha

Sorry to hear about your dad. I echo the advice about not googling too many sites. The one that is also good is the macmillan site. They have a section dealing with prostate cancer. I was diagnosed with locally advanced pca last February, and found the Prostate Cancer UK nurses to be exceptionally helpful to talk to and good for providing reassurance. Most importantly they always have time to talk to you. There is no time limit.

Best wishes

Richard

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User

Posted 05 Jan 2016 at 19:23

Hello Natasha and welcome to the site.

Best Wishes
Sandra

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

User

Posted 05 Jan 2016 at 19:24

This is from my own experiance

Like your dad i have bone mets in my right hip and pelvis but no liver cancer

The HT will control the testosterone

which feeds the cancer so that the growth and spread will slow down it will also help lower his PSA levels

Early chemo is the latest treatment to run along side the HT which i am also having have had 5 of 6 treatments

The extra MRI scan will help with decisions i had one for my liver as CT scan showed a leision but turned out to be a large blood vessel so heres hoping for your dad

They will tell you all about possable sideaffects when the time comes for chemo it affects us all differently

The HT treatment will proberbly change your dads emitional state

You say that you have read loads hopefully not to much from google

Make constant notes on every visit write down questions in time dad and mam will want to know more and you may stuggle to remember we have built up a file ask for copies of all your dads tests

What was your dads gleason score

Ask them about his staging

The HT will help for a long while

Hope some of this helps

Regards

Nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 05 Jan 2016 at 20:12

run long and prosper

'pooh how do you spell love'

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

User

Posted 05 Jan 2016 at 20:38

Wow, thanks so much for the amazing responses and support.

You've answered something I was wondering, I was confused about the uncertainty of the liver situation, I thought they would just assume it was cancer spread, but obviously they can't assume anything.

Unfortunately, my dad has a history of alcoholism, but he hasn't touched alcohol for over 22 years and hasn't had any liver problems before now, surprisingly! He's definitely looking a bit yellow lately though. No other symptoms.

I've steered clear of googling, and have stuck to this website and NHS website. The specialist nurse also told me today to stick to this one.

Thank you both for replying

Natasha

User

Posted 05 Jan 2016 at 23:01

There are others with more experience on bone Mets and chemo and I'm sure they will reply yo you soon.

I hope this helps and hope your Dads treatments work out ok.

Best Regards
Paul

User

Posted 05 Jan 2016 at 23:08

Hi Natasha

Best wishes

Richard

User

Posted 06 Jan 2016 at 09:16

Thank you everyone.

It's such a scary time, waiting for test results and appointments is torture.

My main fear now is that the liver issue will turn out to be something unrelated to the PCa and that will mean the chemo is a no go. What would happen then, would it just be the Hormone injections, or are there other options? I did try to ask the consultant this but he didn't give me an answer.

He talked about referral to orthopaedics for the hip and he mentioned a liver biopsy, it was so confusing.

Natasha

User

Posted 06 Jan 2016 at 11:03

Hi Natasha I can't help you with your questions but would suggest that you call the specialist nurse team if you don't feel up to talking you can always do an online chat as I did to start with, they are fantastic and will help you no end. Jayne

User

Posted 06 Jan 2016 at 16:02

Totally agree with what has been said about the specialist nurses. I have probably spoken to the majority of them over the last 10 months, and one in particular I got on extremely well with, even getting another nurse to ask her to ring me back on more than one occasion. Its pot luck who happens to answer when you ring. They helped me tremendously through diagnosis, tests and treatment and I really must ring the one I get on so well with again. I even sent them a Christmas card, and my local Darby and Joan Club have sent a donation to Prostate Cancer UK. I always feel better and reassured when I have spoken to them.

Cheers

Richard

User

Posted 06 Jan 2016 at 16:13

What is it nakes you think chemo will be a no go if liver is clear
Have they said dad need x amount of cancer nodes before giving chemo

run long and prosper

'pooh how do you spell love'

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

User

Posted 06 Jan 2016 at 16:44

I probably wasn't very clear, sorry.

I think what the oncologist was saying was if the abnormality in the liver is prostate cancer then that's fine (well not exactly fine!)

If it's something separate then chemo could be a problem because his liver needs to be functioning well?

I guess we won't know until he's had the MRI exactly what's going on with his liver,

I tried to do the chat with the nurses but it keeps telling me to allow cookies, which I've done but it still keeps saying it. I'll try from my laptop later.

It's so hard to understand, widespread cancer in his body and he feels fine! 😳

The support from this forum is amazing x

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Dad just diagnosed with advanced PCa

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