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Livinโ€™ the dream!

User
Posted 26 Jan 2025 at 20:34

If you ask how I am doing I shall, invariably respond with the phrase “Livin’ the dream!”

I am a carpenter joiner running a construction and woodworking company specialising in historic joinery repair and solving other people’s mistakes and problems.

I have a fantastic wife and two step sons aged 18 and 20.  

I saw some random video on Facebook about three years ago that listed a selection of urology symptoms related to prostate cancer.  I ticked all of the boxes.  Visited my GP, asked the question and was told I was realistically, too young.  One DRE and PSA test later I was on the top threshold.  Test repeated after 3 and 6 months and still on that threshold.  The PSA threshold increased nationally and I reached that too.  Then after over three years of PSA tests it jumped a little more to 2.6.  Low but increasing, so I asked the question again.  

The consultant spoke with me before approving an MRI and despite a full quota of symptoms that were worsening slightly, he relayed to me that I was ‘too young’ in all likelihood but MRI was booked.  Nothing heard for nearly three weeks so I was content no news is good news.  Until the withheld number called to book a pre-surgical assessment at 0900hrs one Monday morning.  They wanted me in the next day!  I politely asked to defer for a fortnight in order to complete a project before Christmas.  Pre-Op Xmas eve and grid biopsy Monday 30th December.

Surgery went fine and I was feeling good the following day.  Come New Year’s Day, not so great.  Admitted to A&E with sepsis and nothing was working for more than 30hrs I was in a Resus Room.  Discharged a week later with two days before the expected results call from a withheld number.  I knew the result at that moment.  But what were the numbers?

My wife and I went together and laughed a lot in the waiting area.  We both knew the result and were just ready to discover if we had choices.

PSA 2.6. Gleason 3+4 T2c

the consultant admitted being more nervous than normal and was dreading this consult because I am 44yrs old.  Different topics were discussed candidly and we were introduced to one of the MacMillan nurses in the SRN team.  

We all went our separate ways, me with a big folder of stuff, my wife to lunch with freinds.  As planned, we both met up later on at home and took about ten minutes to discuss pros and cons and confirm our action plan.

12 months for me to get much fitter and completely change my diet and lifestyle, as well as ensuring financial security ( or the best chance of it) to see us through the ‘mag to grid - get rid’ approach.  This time next year I will have had enough of the quarterly PSA roulette wheel and we will be ready for prostatectomy and the recovery cycle to follow.

These decisions were easy, though not ignorant to the associated consequences and risks.  I know we will need emotional support between now and then too.  The hardest part was telling freinds and family, for which I had my wife running on point for that.  This diagnosis isn’t great but it was the best we could have asked for in the circumstances.  I am almost finding myself telling the blokes around me to get tested and not avoid it.  

Today We are strong, tomorrow perhaps we won’t be as strong.  But if you ask me. I’m livin the dream!  ( even if it isn’t my dream)

As time continues, you will learn I am not that great at emotional support, my intent is there, my execution is questionable.  My attitude is pragmatic and determined to achieve what everyone else says can’t be done in my weird little corner of life.

User
Posted 27 Jan 2025 at 08:10

Welcome to the group Jamie. You seem to have your head in the right place for now, so that is good. I think AS is a good option given your relatively low PSA, but make sure you keep a close eye on the numbers. It's not really the actual level that is the most important, but the rate of rise if it starts climbing. I was on AS for a while, and my PSA climbed steadily from 5.2 to 8, at which point I took the decision to get the thing cut out. It gave me an extra 9 months without any side effects or surgical recovery etc, so that was a bonus.

You could be one of the lucky ones who can stay on AS for years, which would be the best result.

Good luck, and keep us all posted on how you are getting on ๐Ÿ‘

Ian.

User
Posted 27 Jan 2025 at 09:58

Hi Jamie,

I'm sorry to see that you've had to join the club, especially as you are much younger than most of us older codgers, but welcome to the forum.

Your PSA is relatively low, as is your Gleason score, and presumably the cancer is well contained with in the prostate. The only concern to me would be the T2c staging, which as you probably know means there is cancer in both lobes. Only about 2 or 3 years ago NICE guidelines advised against active surveillance for T2c disease. However, when they adopted the Cambridge Prognostic Group staging, which did away with T2a, T2b and T2c and clumped them altogether as T2, they then decided that it was okay for active surveillance. I've never understood the reasoning for this overnight change of advice? 

I started a conversation on it.

https://community.prostatecanceruk.org/posts/t29997-T2c-disease-and-active-surveillance

You can read my story on my profile. 

Despite my active surveillance failure, I'm still a great fan of AS and it is increasingly being used. https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

My only advice would be, ensure your monitoring is active, and that you have PSA checks and timely MRI scans. Mine wasn't correctly monitored and lead to capsular breach and Gleason 9 (4+5), which left me in an unnecessarily precarious position.

Good luck mate and I hope, like it is for the majority, that your AS is successful. ๐Ÿ‘

PS: I wish you'd done my upstairs flooring. The joists and chipboard sheets are so poor and very noisy!  They bug me more than my prostate cancer! ๐Ÿคจ

Edited by member 27 Jan 2025 at 11:48  | Reason: Add link

User
Posted 28 Jan 2025 at 03:26

It's great to hear that your active surveillance is going to be very thorough. I wish you and your family all the best, mate. ๐Ÿ‘

User
Posted 28 Jan 2025 at 08:03

Originally Posted by: Online Community Member
The counselling is not for me to come to terms with cancer but to help me find better ways of dealing with frustration and stress, and most importantly preparing me for two months of recovery when I can expect to be unable to work and feel a burden.

You'll be ok mate. I felt like a spare part at a wedding for a few weeks after surgery, but it's amazing how quickly you get over it physically. Your AS regime sounds very thorough, which is great news.

We all know what you mean about having conversations you'd never have considered before. You leave your dignity at the door of the biopsy room with PCa, and it never really recovers. If you'd told me a few years ago that I'd happily be talking to a bunch of blokes about wetting myself, and not being able to raise a smile so to speak, I'd have given you a few choice words. Water off a duck's back now, (providing I get my aim right.......)

Keep a sense of humour, don't shy away from asking any questions on this forum, and remember there are loads of us on here who are in the same boat and happy to chat any time.

All the best.

Ian.

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User
Posted 27 Jan 2025 at 08:10

Welcome to the group Jamie. You seem to have your head in the right place for now, so that is good. I think AS is a good option given your relatively low PSA, but make sure you keep a close eye on the numbers. It's not really the actual level that is the most important, but the rate of rise if it starts climbing. I was on AS for a while, and my PSA climbed steadily from 5.2 to 8, at which point I took the decision to get the thing cut out. It gave me an extra 9 months without any side effects or surgical recovery etc, so that was a bonus.

You could be one of the lucky ones who can stay on AS for years, which would be the best result.

Good luck, and keep us all posted on how you are getting on ๐Ÿ‘

Ian.

User
Posted 27 Jan 2025 at 09:58

Hi Jamie,

I'm sorry to see that you've had to join the club, especially as you are much younger than most of us older codgers, but welcome to the forum.

Your PSA is relatively low, as is your Gleason score, and presumably the cancer is well contained with in the prostate. The only concern to me would be the T2c staging, which as you probably know means there is cancer in both lobes. Only about 2 or 3 years ago NICE guidelines advised against active surveillance for T2c disease. However, when they adopted the Cambridge Prognostic Group staging, which did away with T2a, T2b and T2c and clumped them altogether as T2, they then decided that it was okay for active surveillance. I've never understood the reasoning for this overnight change of advice? 

I started a conversation on it.

https://community.prostatecanceruk.org/posts/t29997-T2c-disease-and-active-surveillance

You can read my story on my profile. 

Despite my active surveillance failure, I'm still a great fan of AS and it is increasingly being used. https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

My only advice would be, ensure your monitoring is active, and that you have PSA checks and timely MRI scans. Mine wasn't correctly monitored and lead to capsular breach and Gleason 9 (4+5), which left me in an unnecessarily precarious position.

Good luck mate and I hope, like it is for the majority, that your AS is successful. ๐Ÿ‘

PS: I wish you'd done my upstairs flooring. The joists and chipboard sheets are so poor and very noisy!  They bug me more than my prostate cancer! ๐Ÿคจ

Edited by member 27 Jan 2025 at 11:48  | Reason: Add link

User
Posted 27 Jan 2025 at 23:15

Ian and Adrian, thanks for the information and words of support and encouragement.

I have a really bad memory and went into the appointment just wanting the numbers.  That way I could go home and build a picture in my head  without getting caught up in the ‘fluffing about’.  The consultant and his team have been great in letting me ask the questions I wanted to without getting upset about the delivery.

My regime of AS appears to be a little more attentive than some.  PSA every 3 months, meet the consultant again in 3 months (I am told is not usual), and biopsy and MRI every twelve months instead of 24.  The SRN team are amazing too and have already referred me to counselling/therapy, sorted out some help for ED issues and even on the end of the phone for random stuff too.  I feel they are on it and pushing the GP surgery too.

We decided on the day of the diagnosis that neither of us wanted to ride the roller coaster of results.  I will implode and it is my wife that will bare the strain.  The counselling is not for me to come to terms with cancer but to help me find better ways of dealing with frustration and stress, and most importantly preparing me for two months of recovery when I can expect to be unable to work and feel a burden.  I do not plan on still having a prostate this time next year.

With regard to changing guidelines on testing and classifications, I am not a medical professional, however.

As was described to me by an actual medical professional, a number of procedures and tests carried risks that were often more significant than a cancer diagnosis.  Infection or nerve damage from biopsy for example.  Yes I know that higher grade cancer can be the ultimate cause for death in some men, but generally speaking, as a whole population, there was an case made that showed statistically, there was an overall greater exposure to multiple risks posed by more invasive procedures and treatment.

Having studied Sport Science to degree level I am confident to be able to research and read between the lines to a point.  I will not offer advice nor will I try to argue the case.  I was satisfied by what I was told and what I was able to research afterwards.  

I am learning that everyone reacts to this news differently.  I am surprised by the nature of the concerns I have.  I have never felt so exposed with conversations on topics I barely discuss with my wife, now commonplace in rooms of people.  I walked into my local builders merchants at 7am and told them all not to avoid ‘the ole finger in the bum test’ and was happy to discuss how I got to diagnosis.  That same day, in the pharmacy, asking for a medical exemption form and three staff shouted across the counter to each other, repeating my personal details and diagnosis for no less than six customers.  Each time they wanted even more details before repeating them loudly again.  I left, caught up somewhere between rage and tears in a weird battle.

There are younger men than me with more immediate challenges and less choices than I have.  

User
Posted 28 Jan 2025 at 03:26

It's great to hear that your active surveillance is going to be very thorough. I wish you and your family all the best, mate. ๐Ÿ‘

User
Posted 28 Jan 2025 at 08:03

Originally Posted by: Online Community Member
The counselling is not for me to come to terms with cancer but to help me find better ways of dealing with frustration and stress, and most importantly preparing me for two months of recovery when I can expect to be unable to work and feel a burden.

You'll be ok mate. I felt like a spare part at a wedding for a few weeks after surgery, but it's amazing how quickly you get over it physically. Your AS regime sounds very thorough, which is great news.

We all know what you mean about having conversations you'd never have considered before. You leave your dignity at the door of the biopsy room with PCa, and it never really recovers. If you'd told me a few years ago that I'd happily be talking to a bunch of blokes about wetting myself, and not being able to raise a smile so to speak, I'd have given you a few choice words. Water off a duck's back now, (providing I get my aim right.......)

Keep a sense of humour, don't shy away from asking any questions on this forum, and remember there are loads of us on here who are in the same boat and happy to chat any time.

All the best.

Ian.

User
Posted 28 Jan 2025 at 11:56

Ian, 

when it comes flooring, screw and glue.  All in the preparation 

 

User
Posted 28 Jan 2025 at 12:50

Eh? I might be having a senior moment here, but you've totally lost me with that one.........

User
Posted 28 Jan 2025 at 13:40

Originally Posted by: Online Community Member

Eh? I might be having a senior moment here, but you've totally lost me with that one.........

Screwing and glueing on the floor has nothing to do with ED rehab, Ian. It's Jamie's response to my noisy chipboard query. ๐Ÿ˜‚

 
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