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Dad recently diagnosed - advice

User
Posted 16 August 2016 23:00:37(UTC)
Hi,
My dad has recently been diagnosed with prostrate cancer which has spread to his sacrum, ribs, sternum, spine and pelvis. His Gleason score is 9 and all he is offered is hormone therapy "control not cute". I've heard 2 people vaguely mention knowing people who are still going strong 5+ years. Is this a true indication?
Thanks
Bee
User
Posted 17 August 2016 00:28:27(UTC)

Hi Bee,
we have members who have been diagnosed late with extensive spread who have still been with us 10 or more years later, just on HT. We also have had members who were diagnosed at an earlier stage but for whom no treatments have ever really worked for more than a very short time. There is no way really of knowing which group a particular man is going to be in, until the treatment is established and the impact can be measured over a period of time.

Don't think of the HT as 'all he is offered' though - those hormones will be starving the cancer cells so that they can't multiply.

There has been recent research to suggest that having chemo helps the HT to work for longer - there may be reasons why that hasn't been considered for your dad (perhaps because of other medical issues that we don't know about or because that particular hospital is not involved in the early chemo projects) but your dad could phone his nurse specialist and ask the question?

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


User
Posted 17 August 2016 07:26:23(UTC)

Hello Bee and welcome to the site

When HT does it's job properly it not only shrinks the tumour it buys the man some time. In that time new methods of treatment become available (ie the early chemo inclusion that Lyn mentioned).

Research and treatments are changing all the time so "only" HT isn't as it bleak as it appears right now.

I wish him success. He has you in his corner and you have us in yours. Continue to speak to us, especially on those days when it all seems to get too much.

We do all understand how you and your family feel

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 17 August 2016 21:35:34(UTC)
Thank you so both so much for responding. I'm completely numb at the moment and I feel very much in the dark as he stubbornly won't allow anyone to accompany him to his hospital/nurse appointment. I feel like I can't speak to anybody as I don't know enough about it and Dr Google is a nightmare.

Thank you

Bee x

User
Posted 17 August 2016 22:07:11(UTC)

Some men find it very difficult to have family members involved in the conversations & appointments, especially female relatives. The side effects of treatment can be extremely distressing and embarrassing. Of course, he may only be this rigid because it is so new to him - hopefully as he gets his head round it all, he will be happier for someone to accompany him to the appointments.

Google is not our friend in these situations - but don't feel that you can't talk to anyone. The nurses at PCUK are brilliant - the number is at the top of the page here and they are very used to speaking to daughters, sons, friends, partners, etc.

Just as a starter - and perhaps to give you a bit of reassurance - here is a basic summary of PCa.

- The cancer feeds on testosterone
- if it is still within the prostate gland it is often curable but once it spreads somewhere else, it can only be controlled
- there are two types of hormone treatment - a) stops the body from producing testosterone and b) disguises the testosterone so the cancer can't recognise it
- either way, the idea is that the cancer starves
- stopping the production of testosterone is basically chemical castration so you can imagine that the side effects and emotions are very hard for some men to deal with
- later in the disease, some cancer learns to survive without testosterone so then other treatments have to be added
- despite popular opinion, chemo does not cure many cancers on its own - it usually has to be combined with something else. Chemo does not cure PCa so in the past it was only used for men at the end stage of their disease, to make them more comfortable. Recent research has shown that chemo can actually make the HT work for longer but it is still very new and not all hospitals offer it. Nor are all men suitable for it.

My guess is that your dad is having the a) type of HT although he may also have had a bit of b) to begin with to prevent tumour flare. Tumour flare happens when a new treatment starts and the cancer gets very busy trying to fight against the treatment.

The doctors will monitor how well the treatment is working by checking his PSA level regularly, and they may also test his testosterone level to make sure that he hasn't got any. Occasionally, they may also repeat the scans to see what's happening, especially if the PSA is rising instead of going down.

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


User
Posted 18 August 2016 06:43:56(UTC)
Bee

I wanted to do it alone, went for the biopsy and follow up consultantation on my own. It was my problem and I would sort it. In hindsight give him a kick up the backside,tell him not to be selfish and you will sort it together.

Thanks Chris
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