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how to help my dad

User
Posted 21 November 2016 11:33:10(UTC)

Hi Everyone,

My wonderful dad has very recently been told he has prostate cancer and I really hope some of you can help him understand what the prognosis is, and whether he is getting the right treatment since the hospital seem to keep every snippet of information to themselves unless asked direct questions! I'm doing this on his behalf as he is not very computer minded! Following wee problems which he ended up in hospital for, he had a bone scan which showed spots on his ribs and lots of spots on his pelvis, L2-3 and knees/ankles put down to degeneration, PSA levels 231 (but on Finasteride until recently so probably much higher), no Gleason as clinically diagnosed so no biopsy, but t2/nx/m multiple according to clinical nurse specialist.  He has just started on Prostap. I'm assuming from all of this that he has what is termed advanced prostate cancer which is too far advanced for anything other than management of the symptoms, hence the hormone therapy approach. 

If anyone out there can help shed some light on exactly what he facing, and what his long term outlook is likely to be I would be so grateful. I want to help support him as much as possible but veer between being wildly optimistic to completely despondent....

User
Posted 21 November 2016 14:11:01(UTC)
Hi and welcome,

You wil find a lot of support from some very knowledgeable people here, I certainly have. You can always ring the specialist nurses for advice.

Have a look at this link which shows staging:

http://prostatecanceruk....etting-diagnosed/staging

It would be helpful to order the Toolkit from the publications section on this website by phoning or downloading if you prefer.

Best wishes,

Arthur
User
Posted 21 November 2016 18:27:52(UTC)

Hello helpatel and welcome from me too.

It's great that you are trying to help your dad. Download that Toolkit like Arthur suggested.

Did your dad not get a clinical nurse or a personal nurse he could ask questions of?

I am sure you will get more help and support from the members on here who have the knowledge you need (I don't unfortunately) but would it not be possible to ring dad's consultant's secretary and ask for the missing information or at least ask for a contact number for somebody who can help him.

Keep that chin up. Your dad needs you right now.

Best Wishes

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 21 November 2016 19:15:46(UTC)

Your Dad can ask to be copied into all correspondence between the hospital and the GP and I would suggest he requests this to which he is entitled.

The hospital will be trying to slow down the advance of the disease which can progress at a different speeds and in different ways from one patient to another, largely dependent on the type of PCa they have and how it is affected by various treatments.

Barry
User
Posted 22 November 2016 09:16:40(UTC)

Thank you all for replying. Dad does have a nurse to contact, but I thought I would try here as I think the feedback is more honest and the information more immediate! I guess I just wanted to ask if what the hospital is suggesting as a treatment plan is normal for the stage of cancer he has. I know everyone is treated according to individual needs, but I struggle slightly with the wait and see approach as I'd like to bash cancer's head right now!! He is positive which is half the battle, so I will try and be the same.... Has anyone here been on radium 223?

User
Posted 22 November 2016 10:42:13(UTC)

Helen,

You really don't need to be considering Radium 223 as yet. That is way down the line. Click on my name and have a look at my profile. It is probable that Dad will follow a similar treatment path to me. Radium 223 is still some way down the line for me and I was diagnosed with advanced PCa over 3 years ago.

David

User
Posted 22 November 2016 11:52:38(UTC)

Don't get the idea that hormone treatment is somehow hanging around or waiting to start bashing the cancer. The bashing began as soon as that Prostap hit his body.

There are two types of hormone; one starves the cancer by stopping production of testosterone (Prostap is one of these) and the other disguises testosterone to trick the cancer into thinking there isn't any. No testosterone = starved cancer cells = disrupted growth and shrinking tumour.

Your dad may be on one hormone or both, or both for the first month and then just one. Hopefully, that hormone will control the cancer for many years - we have members that are still here 10 and 14 years later because the HT is still working. Sadly for some men the HT only works for a few months - for some it doesn't work at all but they are very rare. Your dad will be monitored so that any sign the HT is failing is picked up quickly.

When HT fails (this is called being hormone refractory), there are a number of newer treatments like Radium223, abiraterone and enzalutimide which can hold the cancer for longer. Chemo does not kill prostate cancer and until recently, was only used when a man was at the end of life stage to make him more confortable. Some recent research has shown though that chemo given earlier makes HT work better so some hospitals would now offer this to your dad but it isn't available everywhere or he may not be thought to be strong enough for chemo at the moment.

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


 
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