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My dads just diagnosed

User
Posted 25 May 2022 at 20:22

Hi all, 

im writing as a daughter an only child and someone who is terrified to lose their dad. My dad aged 70 has just been diagnosed with prostate cancer with a Gleason score of 9. He had no symptoms and he’s  currently awaiting a chest abdomen and bone scan for further results. I’m a registered care manager and deal with looking after people with cancer on a day to day basis and honestly some time too much knowledge is not good. Iv never seen my dad cry until two weeks ago when he found out and it’s frightened me. My dad has had 4 heart attacks in my life time from the age of 17 on wards which have scared me and now this. I am having nightmares every night that’s it’s spread and I’m going to lose my Hero and I really could do with some success stories or helpful information at the moment as I’m lost. I feel helpless as I’m not in control of the  situation and selfish for posting on here as a family member when I’m not experiencing what everyone else is. My dad is still healthy too look at cleans his car, looks after his garden etc but has lost weight. Anything off anyone would be appreciated xxx

User
Posted 25 May 2022 at 22:56
Do you know what his PSA is? Do you know that every man develops prostate cancer if he lives long enough? Nearly three quarters of men your dad's age have it. Most will die with it, not from it. Provided that it hasn't spread, it's a very treatable condition. Even if it has spread, many men live for ten years or more with it.

Best wishes,

Chris

User
Posted 26 May 2022 at 00:53

This forum is for anyone affected by PCa and that means family members just as much as patients. Everyone who has just been diagnosed (or family member) is pretty terrified at first. But once you get more knowledge and read stories of people who are still around 15-20 years after diagnosis you will realise this is not necessarily a big problem.

Now I don't want to detract from some of our members who are going through tough times, but for most people diagnosed with PCa it is just an inconvenience and for a few it will be the cause of death, but many years later.

I'm a G9 myself, but they seem to think I'm cured so I'm happy to go with that.

The PSA figure can give some clue as to whether this is going to be serious, and of course the bone scan etc. In the mean time you need to stop thinking the worst because this is so unlikely to be as bad as you think.

Dave

User
Posted 26 May 2022 at 01:03

Great advice as always from Dave and Barry loads off options and treatment available I was gleeson 9 myself after radiotherapy and 13 months into 2 years of hormone therapy psa down to 0.01 from 24.9 and not stopped working through treatment and generally feeling ok 2 years on 👍

Edited by member 26 May 2022 at 01:04  | Reason: Mistake

User
Posted 26 May 2022 at 20:55

Had treatment with a guy psa 35 and had a clear bone scan lots off hope keep positive bill 👍

User
Posted 26 May 2022 at 21:24

Good luck for tomorrow  all the best  gaz x

Edited by member 26 May 2022 at 21:25  | Reason: Not specified

User
Posted 30 May 2022 at 21:47
Yes - we moan a bit about the NHS but it is much better than the alternative!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 25 May 2022 at 22:49

Hi Laurasky 

Firstly I'm so sorry that you are going along this awful journey, but you are not alone. My husband is newly diagnosed and I too am scared of what is (or isn't) to come. It's natural to be scared. 

As far as feeling selfish for posting, that is what this online community is for. It is to share experiences both good and bad, to be able to talk to people that understand and that are on the same journey, whether it is the same path as yours or not. I think that sometimes we tend to forget that this terrible disease reaches further than just the person who has been diagnosed. 

I have just been in touch with the Macmillan nurses and they were very helpful, so maybe you could try that alongside coming on here. Please try and stay positive and remember to look after yourself as well x sending love to you and your dad x Lou

User
Posted 25 May 2022 at 22:56
Do you know what his PSA is? Do you know that every man develops prostate cancer if he lives long enough? Nearly three quarters of men your dad's age have it. Most will die with it, not from it. Provided that it hasn't spread, it's a very treatable condition. Even if it has spread, many men live for ten years or more with it.

Best wishes,

Chris

User
Posted 25 May 2022 at 23:43

Hi Laurasky

Take a look at my profile. My husband is slightly older than your dad. I had all the same feelings that it was going to be terrible news but things really haven’t been as bad as I first thought. 

It’s alot to get your head around and there will of course be difficult times along the way. Prostate cancer is generally really treatable so I’m sure you’re dad will be fine.

You will feel better when you know more and have a plan in place x

User
Posted 26 May 2022 at 00:07
Hopefully, Dad's PCa has not spread and if it has not he may be offered treatment with curative intent. If it has spread, he will be offered systemic treatment of which there are different kinds to delay the advance of the cancer. After the bone scan has been assessed and considered together with prevous scan biopsy, he should be given a complete diagnosis. When this is received, it would help us and you understand better where he is if you post details and what treatment is offered.
Barry
User
Posted 26 May 2022 at 00:53

This forum is for anyone affected by PCa and that means family members just as much as patients. Everyone who has just been diagnosed (or family member) is pretty terrified at first. But once you get more knowledge and read stories of people who are still around 15-20 years after diagnosis you will realise this is not necessarily a big problem.

Now I don't want to detract from some of our members who are going through tough times, but for most people diagnosed with PCa it is just an inconvenience and for a few it will be the cause of death, but many years later.

I'm a G9 myself, but they seem to think I'm cured so I'm happy to go with that.

The PSA figure can give some clue as to whether this is going to be serious, and of course the bone scan etc. In the mean time you need to stop thinking the worst because this is so unlikely to be as bad as you think.

Dave

User
Posted 26 May 2022 at 01:03

Great advice as always from Dave and Barry loads off options and treatment available I was gleeson 9 myself after radiotherapy and 13 months into 2 years of hormone therapy psa down to 0.01 from 24.9 and not stopped working through treatment and generally feeling ok 2 years on 👍

Edited by member 26 May 2022 at 01:04  | Reason: Mistake

User
Posted 26 May 2022 at 19:50

Gaz61 - I’m praying for a similar outcome - meaning, clear scans despite high PSA & Gleason  (I’m assuming your scans were clear)

I’m PSA 28-30 and Gleason 9, maybe 8. Still a bit confused on the scoring. My pathologist scored it grade group 5

My scans aren’t until 2 June and I’ve read every study on PSA/bone mets probability. Unfortunately, studies typically group 0-10, 10-20, and then jump to 20-50 or even 20-100

So it’s hard for me to gauge what odds I’m facing because I’m at far from the bad ends of 20-50 and 20-100. I’ve scoured the internet for stories of people with 20-30 PSAs who had clear scans

So I find great hope in your outcome. I mean the no bone mets. The outcome of having cancer isn’t comforting - avoiding worst case / bad case outcomes is 

 

Edited by member 26 May 2022 at 19:53  | Reason: Not specified

User
Posted 26 May 2022 at 20:00

Originally Posted by: Online Community Member

I’ve scoured the internet for stories of people with 20-30 PSAs who had clear scans



There are a number of us here, Bill. I had a PSA of 32 at diagnosis. Clear bone scan, but my oncologist did suspect undetectable micro mets in the lymph nodes, hence the recommendation of "whole pelvis" RT. Three and a half years later and (touch wood) so far, so good. My last three PSA tests have been stable at 1.2.

All the best,

Chris

 

User
Posted 26 May 2022 at 20:18

Thanks, Chris. I should be out walking right now. Beautiful where I live today. My bones are either clear or not. I can’t stop trying to find the odds that a 30 PSA will be clear 

User
Posted 26 May 2022 at 20:52

Yes bill luckily my scan's were clear 👍

User
Posted 26 May 2022 at 20:55

Had treatment with a guy psa 35 and had a clear bone scan lots off hope keep positive bill 👍

User
Posted 26 May 2022 at 21:12

My husband has a PSA of 120 x scan tomorrow x fingers crossed 

Edited by member 26 May 2022 at 21:13  | Reason: Not specified

User
Posted 26 May 2022 at 21:24

Good luck for tomorrow  all the best  gaz x

Edited by member 26 May 2022 at 21:25  | Reason: Not specified

User
Posted 26 May 2022 at 21:29
You are wasting your time Bill - the numbers are not going to predict the outcome for you no matter how many sites you look at. We had a man on here a year or so ago with a PSA of 80 and no cancer, let alone bone mets. Si_Ness had a PSA of 3.5 and mets all over his body.

As I said before, you are very focused on bone mets but soft tissue mets are usually much more serious

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

User
Posted 30 May 2022 at 16:47

Thanks for being calm and encouraging 

The problem here - besides my willful ruminating-is American insurance 

Because they won’t greenlight scans on a 30 PSA without biopsy results, I’ve had 23 days to think about things when a common sense approach would’ve put my scan results in hand approximately May 10.

I go on June 2, so maybe it all will be clearer in a week

 

 

 

User
Posted 30 May 2022 at 21:47
Yes - we moan a bit about the NHS but it is much better than the alternative!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 May 2022 at 22:16

Hi Laura - 

I’m praying for you. I’ve been diagnosed w Gleason 9 and am not at all calmly waiting for my bone scans on June 2

I also want to say sorry for hijacking this thread. I am a bit new and somehow thought I was commenting on a thread I’d started. 

The advice from the people on this site - stay calm - is good, though I find it hard to comply due to agonizingly long waits between important information milestones 

Eg, approximately 28 days from my second high PSA to biopsy, 10 days for biopsy results, and then scans 14 days after biopsy results

It turns out that the efficiency-addicted country one ocean to your west loves a good bureaucratic delay now and again

Get outside in the glorious May weather. Meet friends. Sort that junk drawer in the kitchen. Watch mindless TV. 

My Dad got very ill very suddenly in 2001 (stroke/dementia) and overnight lost his gregarious Irish personality

until my shocking PSA result, it was the toughest thing I went through 

My advice from that experience - lean a bit on your most empathetic friends  Call them  Arrange a night out with your funniest friend(s)  

That’s what friends are for  

 

 
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