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User
Posted 18 Jan 2020 at 23:02

Hi everyone -  I have just joined and been reading up .This is my first post . I find it so helpful as well as informative. Ian now 68 , fit healthy and active. Northampton area. 

After an initial psa test in Nov18 (4.8) and biopsy 1/14 active , Gleason 3/3 TNoMo then 12 months of surveillance with psa hovering up / down 6.3 - 7.3 

recent second more extensive biopsy 12/40 cancer cells Gleason 4/3 still TNoMo. Clear MRI. 
Given 3 options - continue surveillance, RP orHT andEBRT.

I have requested appts with oncology and surgery to discuss details to make an informed decision . Reading posts on the treatment options has given me so much more background information and v usual prep for the meeting 
So it’s then decision time . 😩
I think I prefer to take action now rather than continue surveillance so that it is treated before it deteriorates further. 

I agree that I found it a huge relief to share the news with family and close friends - once the first biopsy results came back. It actually helps talking about it and perhaps explained my mood swings to my nearest and dearest😂. 
I too find nights the worse when I can’t sleep the demons appear and so far haven’t been able to stop this . 

thank you everyone for sharing your thoughts and cases. 

Edited by member 20 Jan 2020 at 00:00  | Reason: Error on 1st post - sorry just realised my mistake on my current Gleeson -it is now 3/4 not 4/3 . Ap

User
Posted 18 Jan 2020 at 23:02

Hi everyone -  I have just joined and been reading up .This is my first post . I find it so helpful as well as informative. Ian now 68 , fit healthy and active. Northampton area. 

After an initial psa test in Nov18 (4.8) and biopsy 1/14 active , Gleason 3/3 TNoMo then 12 months of surveillance with psa hovering up / down 6.3 - 7.3 

recent second more extensive biopsy 12/40 cancer cells Gleason 4/3 still TNoMo. Clear MRI. 
Given 3 options - continue surveillance, RP orHT andEBRT.

I have requested appts with oncology and surgery to discuss details to make an informed decision . Reading posts on the treatment options has given me so much more background information and v usual prep for the meeting 
So it’s then decision time . 😩
I think I prefer to take action now rather than continue surveillance so that it is treated before it deteriorates further. 

I agree that I found it a huge relief to share the news with family and close friends - once the first biopsy results came back. It actually helps talking about it and perhaps explained my mood swings to my nearest and dearest😂. 
I too find nights the worse when I can’t sleep the demons appear and so far haven’t been able to stop this . 

thank you everyone for sharing your thoughts and cases. 

Edited by member 20 Jan 2020 at 00:00  | Reason: Error on 1st post - sorry just realised my mistake on my current Gleeson -it is now 3/4 not 4/3 . Ap

User
Posted 18 Jan 2020 at 23:10
I’d certainly want to get it treated. Gleason 4+3 cancer isn’t something you want to leave to its own devices. RP and RT have very similar (and good) long-term success rates, so it basically comes down to which set of side-effects you find least objectionable.

Best of luck, whatever you decide.

Chris

User
Posted 19 Jan 2020 at 00:08

Hi Sorry you find yourself here.

I would agree that now is the time for treatment with a 4+3. They would be doing you a disservice offering further surveillance I think. Active surveillance is only normally advised up to 3+4 ( and regarded as favourable i.e low volume and looks to be well contained away from the edges.

The decision on treatment is not easy as differing treatments seem to have similar outcomes but of course side effects need to be taken into account. We chose surgery as we wanted to know exactly how much of the prostate was involved and whether the Gleason score was confirmed. 

We live in Northamptonshire so feel free to read  Tony's profile. If you opt for surgery you will have it at Leicester General unless you opt for somewhere else. I think Radiotherapy is done at Northampton.

Tony had a very capable surgeon although he is not one of the big names and we are happy enough with the outcome as he  had negative margins and PSA undetectable so far after 2 years. We were given the difficult choice whether to spare the nerves or not as some of the tumour was close to the edge. (Hindsight is a marvellous thing but we have no regrets as some men still have permanent Erectile dysfunction even when they are spared)

Everyone is different though and some are lucky with very little or no side effects after a time.

Good luck with whatever treatment option you go for.

Ann

 

Edited by member 19 Jan 2020 at 00:14  | Reason: Not specified

User
Posted 19 Jan 2020 at 01:56

Hey!

if there is reasonable evidence to suggest at this stage localised there is compelling pathway for RARP. Mine has been ok but some minor issues which I think will resolve over time. When I got it out felt epic. Cancer is cancer and a fair chance it will come back based on distant seeding but that will potentially buy us time.

good luck

TG

User
Posted 19 Jan 2020 at 03:03

You say you have sleepless nights over this, but in your condition you statistically have more than a 98% chance of surviving for fifteen years, by which time you might have died of something else.

I concur that the time is right now for radical treatment, and if you elect for surgery, find yourself a good high volume surgeon with excellent outcomes. My own surgeon (who does 300-400 ops a year, worldwide), said he wouldn’t send a friend or family member to any surgeon who does less than 100 prostatectomies a year.

You can check on prognostications here:

https://www.mskcc.org/nomograms/prostate/pre_op

And on surgeons’ outcomes here:

https://www.baus.org.uk/default.aspx

Best of luck.

Cheers, John

Edited by member 19 Jan 2020 at 03:09  | Reason: Not specified

User
Posted 19 Jan 2020 at 08:15

I had Radio therapy & Hormone at Addenbrooks, Cambridge - with no regrets so far.

in 2018, my PSA was 27 & Gleason 3-4 following tests.

In Dec 2019 PSA was 0.06.

The choice comes down to Treatment that takes a year or more (RT & Hormone)

OR

Removal that can leave you with pain etc for a month or so - & an operation scar.

There are side effects, either way.

Good luck.

 

User
Posted 20 Jan 2020 at 05:33
With this latest information I would put active surveillance back on the table for consideration for the time being. All radical options have not very pleasant side effects, and I advocate AS as long as your medical team think you can get away with it. My friend is G 3+4 and has been on AS for five years.

It’s up to you of course, I had virtually pain-free surgery. Click on my profile to read the gory details if you wish.

Cheers, John.

User
Posted 20 Jan 2020 at 23:51

Originally Posted by: Online Community Member
I still believe I should take action rather than continued surveillance as it’s gradually deteriorating so why put it off?

Because the side effects of treatment are rather unpleasant. The longer you can avoid them the better. 

Dave

User
Posted 21 Jan 2020 at 08:42
Very much a personal preference whether you want to get something unpleasant that needs doing over and done with, or put it off for the future. I'd go with the former, but it's a personal decision.

Best wishes,

Chris

User
Posted 21 Jan 2020 at 12:30

I was tempted by the AS route and my local doctors had recommended this over surgery. But I had a niggle and gut feeling not to leave things based on a number of fundamentals.... better surgical margins, less ongoing diagnostics, less probability of metastasis sooner it’s treated. I saw the Prof Whocannotbenamedonhere for a second opinion and he agreed with my reasons to just get it out. As it turned out the tumour was more extensive than thought plus was very close to breaking out and was upgraded to 3+4. For me the hardest and best decision of my life. Good luck with whichever path you choose.

TG

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User
Posted 18 Jan 2020 at 23:10
I’d certainly want to get it treated. Gleason 4+3 cancer isn’t something you want to leave to its own devices. RP and RT have very similar (and good) long-term success rates, so it basically comes down to which set of side-effects you find least objectionable.

Best of luck, whatever you decide.

Chris

User
Posted 19 Jan 2020 at 00:08

Hi Sorry you find yourself here.

I would agree that now is the time for treatment with a 4+3. They would be doing you a disservice offering further surveillance I think. Active surveillance is only normally advised up to 3+4 ( and regarded as favourable i.e low volume and looks to be well contained away from the edges.

The decision on treatment is not easy as differing treatments seem to have similar outcomes but of course side effects need to be taken into account. We chose surgery as we wanted to know exactly how much of the prostate was involved and whether the Gleason score was confirmed. 

We live in Northamptonshire so feel free to read  Tony's profile. If you opt for surgery you will have it at Leicester General unless you opt for somewhere else. I think Radiotherapy is done at Northampton.

Tony had a very capable surgeon although he is not one of the big names and we are happy enough with the outcome as he  had negative margins and PSA undetectable so far after 2 years. We were given the difficult choice whether to spare the nerves or not as some of the tumour was close to the edge. (Hindsight is a marvellous thing but we have no regrets as some men still have permanent Erectile dysfunction even when they are spared)

Everyone is different though and some are lucky with very little or no side effects after a time.

Good luck with whatever treatment option you go for.

Ann

 

Edited by member 19 Jan 2020 at 00:14  | Reason: Not specified

User
Posted 19 Jan 2020 at 01:56

Hey!

if there is reasonable evidence to suggest at this stage localised there is compelling pathway for RARP. Mine has been ok but some minor issues which I think will resolve over time. When I got it out felt epic. Cancer is cancer and a fair chance it will come back based on distant seeding but that will potentially buy us time.

good luck

TG

User
Posted 19 Jan 2020 at 03:03

You say you have sleepless nights over this, but in your condition you statistically have more than a 98% chance of surviving for fifteen years, by which time you might have died of something else.

I concur that the time is right now for radical treatment, and if you elect for surgery, find yourself a good high volume surgeon with excellent outcomes. My own surgeon (who does 300-400 ops a year, worldwide), said he wouldn’t send a friend or family member to any surgeon who does less than 100 prostatectomies a year.

You can check on prognostications here:

https://www.mskcc.org/nomograms/prostate/pre_op

And on surgeons’ outcomes here:

https://www.baus.org.uk/default.aspx

Best of luck.

Cheers, John

Edited by member 19 Jan 2020 at 03:09  | Reason: Not specified

User
Posted 19 Jan 2020 at 08:15

I had Radio therapy & Hormone at Addenbrooks, Cambridge - with no regrets so far.

in 2018, my PSA was 27 & Gleason 3-4 following tests.

In Dec 2019 PSA was 0.06.

The choice comes down to Treatment that takes a year or more (RT & Hormone)

OR

Removal that can leave you with pain etc for a month or so - & an operation scar.

There are side effects, either way.

Good luck.

 

User
Posted 19 Jan 2020 at 11:33
Interesting; I am guessing T1 / T2a on the basis that AS is still on the table.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Jan 2020 at 00:02

Thanks for the links very useful .

User
Posted 20 Jan 2020 at 00:08

Hi - I tried to update my post but it’s only shown part of the update. 
sorry but realised I made a mistake in the first post in that my recent Gleeson result was 3/4 not 4/3- I appreciate overall total remains at 7 but assume 3/4 is slightly better news than 4/3.

My T is T1c 

I still believe I should take action rather than continued surveillance as it’s gradually deteriorating so why put it off. 


sorry about the mix up  but still learning about all of these terms . 
thank you everyone for your prompt responses , information and support - much appreciated. 

User
Posted 20 Jan 2020 at 00:10

Yes a good guess at T1c👍😂

User
Posted 20 Jan 2020 at 01:50
Yes, G3+4 is much better news than G4+3 as it indicates that the majority of cancer cells are still of a 3 pattern as they were in your original biopsy. As the actual cell patterns tend not to change over time, this means that you either had a small minority of 4s in the original biopsy but they have progressed more than the 3s since then OR the 4s have developed since OR there were 4s right from the start but the original samples didn't hit them. Biopsy is rather like sticking a pin in a fruit cake and hoping to spear a cherry.

Any which way, now that your second pattern is 4 I can understand why you feel that it is time to act although the tumour is apparently still very small.

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

User
Posted 20 Jan 2020 at 05:33
With this latest information I would put active surveillance back on the table for consideration for the time being. All radical options have not very pleasant side effects, and I advocate AS as long as your medical team think you can get away with it. My friend is G 3+4 and has been on AS for five years.

It’s up to you of course, I had virtually pain-free surgery. Click on my profile to read the gory details if you wish.

Cheers, John.

User
Posted 20 Jan 2020 at 08:33
When I was diagnosed (Gleason 4+3, T1c) I was told that we could just do active surveillance but that in 6 -9 months I was likely to have to make the choice between surgery and hormone / radiotherapy. My thinking was, why wait and just give the cancer the chance to develop more? I went ahead with the hormone / rt option. No regrets.

Hermit

User
Posted 20 Jan 2020 at 19:29

Thanks John - interesting read - May your success continue 👍👍👏

User
Posted 20 Jan 2020 at 23:51

Originally Posted by: Online Community Member
I still believe I should take action rather than continued surveillance as it’s gradually deteriorating so why put it off?

Because the side effects of treatment are rather unpleasant. The longer you can avoid them the better. 

Dave

User
Posted 21 Jan 2020 at 08:42
Very much a personal preference whether you want to get something unpleasant that needs doing over and done with, or put it off for the future. I'd go with the former, but it's a personal decision.

Best wishes,

Chris

User
Posted 21 Jan 2020 at 12:30

I was tempted by the AS route and my local doctors had recommended this over surgery. But I had a niggle and gut feeling not to leave things based on a number of fundamentals.... better surgical margins, less ongoing diagnostics, less probability of metastasis sooner it’s treated. I saw the Prof Whocannotbenamedonhere for a second opinion and he agreed with my reasons to just get it out. As it turned out the tumour was more extensive than thought plus was very close to breaking out and was upgraded to 3+4. For me the hardest and best decision of my life. Good luck with whichever path you choose.

TG

 
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