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Gleason and Recurrence

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User
Posted 17 Dec 2022 at 12:38

Hi 

I have read that the prevalence of Grade 5 cells means highly likely recurrence. I am G 9,with 8 positive cores of which 6 contain 5s.

Now I am not negative, but I am a realist and I like to plan. The presence of malignant high grade cancer cells that have been present for a long time would suggest to me that however successful my initial treatment, a recurrence somewhere down the track is very likely.

I will soon start RT and if in two to three years there is a recurrence what will my options for treatment be? Am I correct that RT will not be an option? Will it be HT.

There is no emotion in this, I just like to plan.

I never had any symptoms which I also find baffling. In hindsight I can only pinpoint the fact that I was always " a piss, a pint" man and dear God I loved a pint or six 

 

Cooley Brendan 

 

 

 

 

Edited by member 18 Dec 2022 at 01:08  | Reason: Explanation

Cooleymountain 

User
Posted 17 Dec 2022 at 13:38

I'm G9 and had RT four years ago. All is going well. You are correct that if it recurs RT is unlikely to be an option (depends where it recurs). HT almost certainly would be the first line of treatment. However new treatments like lutetium, immunotherapy and gene therapy are all about a decade away (and have been for about two decades).

I understand what you mean by "I like to plan" but with so much uncertainty you can't do much. 

I have PSA tests every six months. The only thing they tell you for certain is that you haven't died in the last six months. If they keep coming back clear, that also increases the probability that future ones will come back clear. When they start to come back positive, then with current treatment I will have about five years of good quality life, followed by five years of deteriating quality of life and then death. Like you there is no emotion in all this, it's just a realistic view of the future. 

I was diagnosed at 53, I am now 58. If you had asked me my life expectancy before diagnosis I would have said 85. on diagnosis I would have said 65. Now I would say 73. 

Edited by member 17 Dec 2022 at 14:15  | Reason: Not specified

Dave

User
Posted 17 Dec 2022 at 14:04

CM, I was 4+3 with tertiary Gleason pattern 5. I had surgery, salvage RT and in August the year SABR treatment and so far I have avoided HT. 

The following article pop up on my phone this morning.

https://www.practiceupdate.com/c/145664/1/3/?elsca1=emc_enews_expert-insight&elsca2=email&elsca3=practiceupdate_uro&elsca4=urology&elsca5=newsletter&rid=NDAwNTU0NjMwODE1S0&lid=20845153

We do seem to be moving more towards eradication of the source instead of containing or controling the spread. Of course for many it will not be suitable.

Thanks Chris 

User
Posted 18 Dec 2022 at 01:56

Oh there's no real problem planning day to day life. It's more thinking long term, 10-15 years. Will I need a pension? Does the mortgage need paying? The best thing is just plan as if you will live to about 85. However accept that, that may not happen. BTW if you have life insurance you almost certainly can make a claim.

HT will not stop you traveling, though you probably need to be in the UK every three months for your injection. You may find insurance is about three times what it should be, but shopping around, or excluding existing conditions may make it reasonable. RT will take six weeks out your life, and I would be hesitant about making plans to travel for a few months afterwards.

Dave

User
Posted 18 Dec 2022 at 11:04
Very wise, I think. RT is your best bet at that stage. With T3 the chance of needing SRT after RP is very high.

Best wishes,

Chris

User
Posted 18 Dec 2022 at 22:00
There should be no problem travelling before RT, once you have started your HT. Not much problem travelling after the RT has finished either - just need to be careful in hot sun snd use factor 50 / sun block and / or wear a T-shirt. We went to France as soon as RT was finished, and Gambia about 3 months later.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 17 Dec 2022 at 13:38

I'm G9 and had RT four years ago. All is going well. You are correct that if it recurs RT is unlikely to be an option (depends where it recurs). HT almost certainly would be the first line of treatment. However new treatments like lutetium, immunotherapy and gene therapy are all about a decade away (and have been for about two decades).

I understand what you mean by "I like to plan" but with so much uncertainty you can't do much. 

I have PSA tests every six months. The only thing they tell you for certain is that you haven't died in the last six months. If they keep coming back clear, that also increases the probability that future ones will come back clear. When they start to come back positive, then with current treatment I will have about five years of good quality life, followed by five years of deteriating quality of life and then death. Like you there is no emotion in all this, it's just a realistic view of the future. 

I was diagnosed at 53, I am now 58. If you had asked me my life expectancy before diagnosis I would have said 85. on diagnosis I would have said 65. Now I would say 73. 

Edited by member 17 Dec 2022 at 14:15  | Reason: Not specified

Dave

User
Posted 17 Dec 2022 at 14:04

CM, I was 4+3 with tertiary Gleason pattern 5. I had surgery, salvage RT and in August the year SABR treatment and so far I have avoided HT. 

The following article pop up on my phone this morning.

https://www.practiceupdate.com/c/145664/1/3/?elsca1=emc_enews_expert-insight&elsca2=email&elsca3=practiceupdate_uro&elsca4=urology&elsca5=newsletter&rid=NDAwNTU0NjMwODE1S0&lid=20845153

We do seem to be moving more towards eradication of the source instead of containing or controling the spread. Of course for many it will not be suitable.

Thanks Chris 

User
Posted 17 Dec 2022 at 14:07

Dave 

Your response is most welcome.  Your thinking reflects my approach and view of the world, but you are better informed than me and further along the journey so your perspective is appreciated. thank you.

Brendan 

 

 

 

Cooleymountain 

User
Posted 17 Dec 2022 at 14:12

Chris 

Thank you. Interesting read.

Brendan 

 

 

 

Cooleymountain 

User
Posted 18 Dec 2022 at 01:12

Hello Dave 

Just for clarification what did you mean by its difficult to plan? As I will soon embark upon HT, I was still hoping to do a little travel prior to RT starting? Am I being naive? I am grounded for the next couple of years?

Brendan 

 

 

 

Cooleymountain 

User
Posted 18 Dec 2022 at 01:56

Oh there's no real problem planning day to day life. It's more thinking long term, 10-15 years. Will I need a pension? Does the mortgage need paying? The best thing is just plan as if you will live to about 85. However accept that, that may not happen. BTW if you have life insurance you almost certainly can make a claim.

HT will not stop you traveling, though you probably need to be in the UK every three months for your injection. You may find insurance is about three times what it should be, but shopping around, or excluding existing conditions may make it reasonable. RT will take six weeks out your life, and I would be hesitant about making plans to travel for a few months afterwards.

Dave

User
Posted 18 Dec 2022 at 02:06
PCa can have spread with lower Gleason scores than yours get not with as high as yours, although admittedly this is less likely. What is most important is your staging, which I don't see. This forms part of your diagnosis. If the RT can reach all your PCa, aided and abetted by HT, you might not need further treatment or for quite a time. There is no certainty in the way cancer cells progress. So consider it as it comes and if required what is on offer including trials. You should have plenty of time to agree any next steps with your consultants.
Barry
User
Posted 18 Dec 2022 at 02:14

Dave 

Many thanks. I think I will only see 85 on a door but if I get out of my 60s into my 70s in reasonable health, I will be delighted.

It's a bugger not being able to travel but you are correct in saying better not to after RT, particularly as I don't know what shape I will be in.

Never thought of taking out life insurance. How foolish of me eh? Thought I was fit as a butchers dog.

Brendan

 

 

Cooleymountain 

User
Posted 18 Dec 2022 at 07:35
For a newly diagnosed G9 you should ask about second line HT + chemo as well as your RT that seems to be emerging as the winner winner chicken dinner option in treating G9s. Obviously the initial side effect profile is tougher than plain RT / HT but there is mounting evidence it is effective long term.

Why are you ruling out surgery? Is the staging T3?

User
Posted 18 Dec 2022 at 10:10

It is indeed stage 3 and I am ruling out surgery because it seems to produce more incontinence issues and it seems to rarely cure the beast. 

Cooleymountain 

User
Posted 18 Dec 2022 at 11:04
Very wise, I think. RT is your best bet at that stage. With T3 the chance of needing SRT after RP is very high.

Best wishes,

Chris

User
Posted 18 Dec 2022 at 11:50
Well deo volente!

Thanks

Brendan

Cooleymountain 

User
Posted 18 Dec 2022 at 22:00
There should be no problem travelling before RT, once you have started your HT. Not much problem travelling after the RT has finished either - just need to be careful in hot sun snd use factor 50 / sun block and / or wear a T-shirt. We went to France as soon as RT was finished, and Gambia about 3 months later.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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