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User

Posted 18 Jan 2016 at 22:14

Hi there,

This week I just learned that my father has prostate cancer and I am absolutely gutted.

He has a bone scan on Thursday so will know more then but I just wanted to know if anyone out there has any experience.

I think he said 17 biopsies were taken and I think 8 of them had cancer in them. He was given a primary score of 3 and a secondary of 4 so his gleason is 3+4 - 7

Any advice would be amazing - I think he has had some symptoms for a year and a half or so so I am just praying it hasn't spread.

User

Posted 19 Jan 2016 at 06:32

hi sandra
yep it is a worring time, when he does attend the bone scan make sure someone goes with him for support
gleason score of 7, I am sure others who have been diagnosed with the same will offer better advice than I can

once they have the results of this which can take a couple of weeks to get then he will be able to start looking at treatment, or depending on what the scan shows he may get an MRI and/or CT scan, the waiting is one of the hardest parts

have they prescribed any hormone therapy

as per normal get the toolkit off this site, make a note of the specialist nurses number, and have paper and pen at hand for any questions you may think of

its early days at the moment and every possable outcome will be going through your head, never be shy to ask anything on here

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 19 Jan 2016 at 08:41

Hi Sandra

Sorry to hear about your Dad and it is understandable that you are worried.

I can only tell you what helped me when I was diagnosed and that was to quietly read the information available from Prostate UK. Having read the information I was able to make list of things that I was still unsure of so that I could ask the right questions.

Once I felt that I had a better understanding of PCa and how it was affecting me, it made discussions about where to go next so much easier.

Talk to your Dad and I am sure that between you as you learn more your anxiety will subside and you will feel a bit more in control.

Take it a step at a time and try not to second guess what might happen.

I had the bone x-ray and MRI, had a Gleason of 9 and T3b. Once all the results were in I was them able to go away, think about options, ask more questions, make a decision and then get on with it. No regrets, no looking back just moving forward quietly a step at a time.

All the very best to you both.

Kevan

User

Posted 19 Jan 2016 at 09:02

Hello Sandra and welcome to the site.

Gleason 3+4=7 is much better than 4+3=7 so that's in his favour.

Do you know what his PSA score was as it also helps with advice.

You mention primary scores so does that mean they said the cancer was only on one side of the prostate?

Once the scans are done you'll all have a better idea of how to proceed.

As he others have said try and download The Toolkit from publications or ring and order a hard copy. It's always handy to have it available.

Mostly though I just want to say don't panic. Everything you feel now has been felt by all of us, whether we be the patient or a loved one helping and supporting that patient, so never feel alone .

Once the information is back and the specialists have given dad their opinions then you can go from there. Prostate cancer is a bit of a rogue in that it doesn't affect all men the same, even if they had the same scores and tumour and positions the same. You could have somebody with PSA of 2.5 with aggressive spread so try not to second guess what could happen

My own husband had Gleason of 3+4=7 and was treatable.

Try and keep calm. It's good that your dad has you supporting him. Anything you want to know then please ask.
Somebody will have the necessary experience

All the best from another

Sandra

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

User

Posted 19 Jan 2016 at 09:18

Hi Sandra,

Its a first step in the journey and worrying time, which has happened to many on the site. I was dx with Gleason 9 in May 2015 and then had bone scan, MRI and CAT. I started HT immediately after diagnosis and after tests the chemo shortly afterwards. On last round of 6 which has reduced the PSA from 294 to 9.7. The start is very worrying but gets better once you know what the scan results are and what the next treatment step is.

I've been lucky in that the physical effects haven't been too bad and mentally wise it is a lot easier if you have someone to talk to and doesn't mind listening to your woo's and concerns. If your relationship is good with your dad, let you be his sounding board and discuss all things medical. Also I found it useful to record (or pen and paper) any consultations you have with the medical team in the furture as its good to look back over it.

Good luck

Steven

User

Posted 19 Jan 2016 at 12:39

Thanks so much everyone you have all been very helpful!

Ok so I just found out that his PSA is 10.5 and his Gleason is 3 & 4 - 3 is the prodominent score with a few 4's.

He is on a hormone pill now and will have bone scan on Wednesday.

I just found out I am pregnant yesterday so hoping more than ever all will be ok :) xx

User

Posted 19 Jan 2016 at 12:49

congrats on your news
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 19 Jan 2016 at 15:03

Sandra I really hope that the news of a new baby will give your dad a bit of a lift, I do hope so anyway.

Do your best to look after yourself and the new little one.

Sandra

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

User

Posted 30 Jan 2016 at 13:11

Hi all

I have an update.

My dads MRI and bone scan is both clear thank god!

They have now asked him to get full bloods then come in to discuss treatment.

So here is it all:

PSA 10.5 (raised in a year from 8)

Ger score of 7 (3&4)

Both bone and MrI are clear

Any suggestions on what you think best treatment

User

Posted 30 Jan 2016 at 13:25

I would have thought active surveilance may be one option, brachytherapy seems to be another option a few are going with, but I am not that up to date with the all the treatments and side affects
you need to wait till your next meeting to see what thoughts the onco has
what ever way you choose to go all the best with it

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 30 Jan 2016 at 13:47

Good news that dad's PCa appears to be contained ( localised )

Pending blood results and his health in general there may well be a number of treatments on offer, all of which will very likely have a curative intent.

Did dad receive a clinical T staging? ..... If he did ,this may be a deciding factor as to whether he will be offered Active Surveillance or be offered more radical treatment.

I'm afraid no one will be able to suggest which will be his best treatment path....that will be for him to decide together with perhaps guidance from the medics....

Whatever treatment(s) dad is offered it will be important for him to take his time and research all the pros and cons before deciding.

Best Wishes
Luther

Edited by member 30 Jan 2016 at 13:49 | Reason: Not specified

User

Posted 30 Jan 2016 at 16:21

Hello again Sandra

As I previously said, my husband's Gleason was 3+4 and he opted for low dose seed brachytherapy having been on Active Surveillance for a year.

Have you downloaded that Toolkit yet. If not it will be a really good help to your dad when it comes to asking questions about his future treatment.

None of us can answer what would be the best treatment because we 're all different in how we react and what treatments work best for us.
What works for us might not work for your dad.

Whatever route he chooses he needs to be completely happy with because,after all, he will be living with the consequences for the rest of his life.

If his cancer is contained then he has time to research and make his pros and cons list, which may well include doing nothing at all for a while.

Best not to rush into anything if the situation isn't urgent

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

User

Posted 03 Feb 2016 at 16:11

Thanks everyone for the feedback. For the last person who commented I know noone can tell me what is going to happen I am really just looking to talk to people at the moment while I go through this with my dad.

Today he went back in to the clinic as he has a cyst on his back and they are now doing a biopsy on it - apparently this was something he had pain with back in August and they did a MRI and saw a cyst type thing in his back but this wasn't discussed since.

For some reason the consultant has now seen it and asked for a biopsy - I am just confused as to why it is only being checked now!

Edited by member 03 Feb 2016 at 16:38 | Reason: Not specified

User

Posted 12 Feb 2016 at 19:20

Hi sandramagee,

I know it's different for all of us on here, but I had these few thoughts I wanted to share....don't know if they might help :-).

1. Don't let the cancer become the dominant thing in his life or your relationship with him. Just remember he is more than the cancer.

2. Whatever course of treatment he chooses to take, sometimes just a listening ear and a friendly presence can be an enormous help - remember he is a man and most men (alright generalisation) don't do health that well.

3. Is there a local support group he can link up with? I found a local group really helpful in just listening to the experiences of others and realising I'm not alone in the way I felt (and feel) at times.

You're not alone in wanting to support your dad - ask away.

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