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It's not a big deal...is it?

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User
Posted 29 Feb 2020 at 05:52

Good morning all. I've just recently diagnosed locally advanced.I have a PSA of 9 and a Gleason score of 7 ...The urologist said it's a big beefy tumour!

I'm taken the hormone tablets for three months and then a month or so of radiotherapy.

My problem is I can't understand why I'm just not worried about all this Its as if I've broken my arm and yes it will take time but all will be sorted. 

My friend on the other hand has a PSA of 42 Gleason score 9 but localized tumour and he thinks that the end is neigh. 

Whilst trying to find humor in this I offered to swap mine grotty lump for his he's thinking about it.

An I right to be so relaxed about this I just don't think either if us are going to die anytime soon (both mid 60's)

Kind regards

Kipper

User
Posted 29 Feb 2020 at 10:15
Very good reply from Andrew re attitude and getting the tool kit and as he says we don't know your full diagnosis and response to treatment is not entirely predictable. I suggest you might get your friend a copy of the 'Tool kit' too as understanding more about PCa and treatments can help those who are not so confident. You could also suggest he joins us here. Do remember that most of those who post here have ongoing situations and many whose treatment has been very successful have left us or never wanted to join us.
Barry
User
Posted 29 Feb 2020 at 11:34

Hi Kipper, 

Yes, Andy's reply is spot on. It's how you handle anxiety which matters. I am pretty chilled out, most people are more anxious for me than I am for myself. I do occasionally think "oh this is quite serious", but it soon passes. 

If you can take the relaxed attitude you will find life much more pleasant. It'll be hard to change your friends attitude and you probably shouldn't try, it's just the way he is. If he manages to move himself from the dark side to the light, welcome him in, but don't try and push him, no amount of logical argument seems to be able to change the underlying anxiety level. 

Barry makes an excellent point about this group having a disproportionate number of problem cases. When I started reading posts on here about people going from T2 to advanced mets in the blink of an eye, I started to get a bit more anxious about my own condition. The reality is 47,000 men in the UK get diagnosed each year and only about 100 actively post here. Naturally a lot of posts start with "I've got problem x, has anyone else got it", though to be fair quite a lot of posts start "Hi, I'm doing fine" which is really nice to read. 

I assume the other 46,900 men are just doing fine. The other possibility is they all die before they get time to sign on a computer (dark humour helps me). 

So just keep getting on with your life. Keep posting here, good news or bad, the more posts we get the better this forum can represent the reality of the disease. 

 

Dave

User
Posted 29 Feb 2020 at 12:12
Hi Kipper,

I have had the same optimistic outlook as you ever since I was diagnosed with the Big C over two years ago.

So I looked up the stats on it and have been chilled ever since. My surgeon told me I was cured (Professor Pinocchio?) and an oncologist said I won’t die of it. I hope your mate doesn’t die of anxiety!

The word cancer affects people in different ways, and likewise there are hundreds of types of carcinomas. It is not the worst cancer to have, such as pancreatic, lung and liver.

All the best.

Cheers, John.

User
Posted 29 Feb 2020 at 17:26

I'm not as worried about this disease as I thought I would be. That said, I don't want to die of the thing, I saw my father die of this disease (albeit back in 1971) and he suffered dreadfully.

I think age must also be a big factor. I was 67 when diagnosed and am now 71. I do, to a very large extent, count my blessings because I have seen people die way before their time and I'm sure we all have. The last 2 funerals I attended were for people younger than me.

Having said all that, I don't think I'm alone in thinking that the treatment is the biggest thing. My PCa has given me no symptoms whatsoever. I can't say the same about the treatment!

 

User
Posted 01 Mar 2020 at 12:47

Thanks so much for links full of very good stuff. Dr google is doing my head in..kind regards 

Kipper 

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User
Posted 29 Feb 2020 at 10:15
Very good reply from Andrew re attitude and getting the tool kit and as he says we don't know your full diagnosis and response to treatment is not entirely predictable. I suggest you might get your friend a copy of the 'Tool kit' too as understanding more about PCa and treatments can help those who are not so confident. You could also suggest he joins us here. Do remember that most of those who post here have ongoing situations and many whose treatment has been very successful have left us or never wanted to join us.
Barry
User
Posted 29 Feb 2020 at 11:34

Hi Kipper, 

Yes, Andy's reply is spot on. It's how you handle anxiety which matters. I am pretty chilled out, most people are more anxious for me than I am for myself. I do occasionally think "oh this is quite serious", but it soon passes. 

If you can take the relaxed attitude you will find life much more pleasant. It'll be hard to change your friends attitude and you probably shouldn't try, it's just the way he is. If he manages to move himself from the dark side to the light, welcome him in, but don't try and push him, no amount of logical argument seems to be able to change the underlying anxiety level. 

Barry makes an excellent point about this group having a disproportionate number of problem cases. When I started reading posts on here about people going from T2 to advanced mets in the blink of an eye, I started to get a bit more anxious about my own condition. The reality is 47,000 men in the UK get diagnosed each year and only about 100 actively post here. Naturally a lot of posts start with "I've got problem x, has anyone else got it", though to be fair quite a lot of posts start "Hi, I'm doing fine" which is really nice to read. 

I assume the other 46,900 men are just doing fine. The other possibility is they all die before they get time to sign on a computer (dark humour helps me). 

So just keep getting on with your life. Keep posting here, good news or bad, the more posts we get the better this forum can represent the reality of the disease. 

 

Dave

User
Posted 29 Feb 2020 at 12:12
Hi Kipper,

I have had the same optimistic outlook as you ever since I was diagnosed with the Big C over two years ago.

So I looked up the stats on it and have been chilled ever since. My surgeon told me I was cured (Professor Pinocchio?) and an oncologist said I won’t die of it. I hope your mate doesn’t die of anxiety!

The word cancer affects people in different ways, and likewise there are hundreds of types of carcinomas. It is not the worst cancer to have, such as pancreatic, lung and liver.

All the best.

Cheers, John.

User
Posted 29 Feb 2020 at 17:26

I'm not as worried about this disease as I thought I would be. That said, I don't want to die of the thing, I saw my father die of this disease (albeit back in 1971) and he suffered dreadfully.

I think age must also be a big factor. I was 67 when diagnosed and am now 71. I do, to a very large extent, count my blessings because I have seen people die way before their time and I'm sure we all have. The last 2 funerals I attended were for people younger than me.

Having said all that, I don't think I'm alone in thinking that the treatment is the biggest thing. My PCa has given me no symptoms whatsoever. I can't say the same about the treatment!

 

User
Posted 01 Mar 2020 at 09:37

Wow! thanks for the responses.

What my Urologist has said is a bit Double Dutch to me but this is a quote"Gleason 3+4=7bilateral all cores -80%left 70%right perineal invasion Clinical stage T3b(?T4a) NO MO PSA 9 ASA3 Performance status 1 PIRADS5 change in prostate.

He thinks seminal vesicles could also be involved.

I've radied the piggy bank and I'm off for a few days skiing (yet to tell the wife she'll go bonkers) with my nervous friend we have had this jolly to the mountains together for the last 30 years and I see no good reason to stop now. He has to get rid of his Catheter first though😟🙂.

User
Posted 01 Mar 2020 at 12:11

Thanks Andrew

Just working out how to tell the fun police (darling wife) There's a small chance she'll be glad to see the back of me for a few days.

 

User
Posted 01 Mar 2020 at 12:47

Thanks so much for links full of very good stuff. Dr google is doing my head in..kind regards 

Kipper 

User
Posted 01 Mar 2020 at 14:12
No need for dr google just this site will be of interest and information .
User
Posted 01 Mar 2020 at 16:17
I just came across this “performance status’ thing only this week, having taken a mate in his eighties to see his oncologist.

He has spread to his pelvis, and together with his arthritis he hobbles along. He is performance status 2. I looked up the scale, it goes from 1 to 5, and status 1 is fit as a fiddle like you evidently, but performance status 5 is dead! I had to laugh, although I shouldn’t!

Enjoy the ski trip if you are allowed to travel by Madam.

Cheers, John.

 
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