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Surgery or wait

User
Posted 02 Jun 2021 at 16:37

Hi everyone. Would just like others thoughts on active surveillance versus surgery.
I got my diagnosis confirmed in December 2020 following MRI and biopsy.
I had a TURP six years ago so they have kept an eye on me. So I was told i had localised cancer and based on everything the urologist recommended watch and wait / active surveillance.

I wasn’t sure if I wanted to wait so spoke to the oncologist about brachytherapy which I would have preferred. Sadly my prostate is too big which he said explains the high PSA as well.
It seems the best thing is to get the prostate out and sort out the cancer and issues I have due to the enlarged prostate. Oncologist said Surgeon may opt to wait for  a while. I speak to the surgeon on Monday. I’m just wondering about people’s thoughts on whether I should get the surgery over ASAP or let them do active surveillance. My fear is If leave it and the cancer spreads or I get the surgery and I’m left incontinent. I know it sounds stupid but that’s what I fear the most about having the surgery. Is it always the case your

left incontinent? 
 

Gleeson score 7

latest PSA 15.7

MRI report. T2a staging.

no node involvement.

no metas spread.

 

User
Posted 02 Jun 2021 at 21:28

Hi Bill,

No you aren't always incontinent.  It's usual to be continent within 6 months.   There are unusual cases and it might not be straight forward getting to continence.   Erectile Dysfunction of some kind is likely.

I shared your fear of it spreading.  I was told it was near the edge of the prostate and my Gleason was 7 initially, 4+3 which is worse than 3+4, both being Gleason 7.   After the op it was said to be 4+4, upgrading isn't uncommon.  Gleason 8 is worse than 7.

I was offered Active Surveillance if I had a template biopsy.

The op was the easiest thing I ever did as I was asleep all the time.  There was a couple of months recovery but nothing that concerned me.  You can read the full story on my profile and website.

I would think a psa of 15 would suggest getting on with it, but you say a larger prostate covers some of that.

You might ask where the lesions are and if they're large or near the edge.  T2a suggests they're on one side.   

How is your Gleason made up, 3+4 or 4+3.  Your consultant has made a judgement, you might think if you have AS it might be 3-6 months before you have an op.  If you give the go ahead now it might be a month. 

Sometimes putting off the inevitable seems  a waste of time, although some on here want to keep their existing Quality of Life.   Some worry about their sex lives and others aren't concerned or much prefer preservation.

Without knowing the full details of your situation it's hard to say although I suspect my preference would be to get on with it after thinking dare I wait, dare I look for other treatments.  Changing my mind every day but not changing that I told the doctor to do the op.  It's not an easy decision.

All the best, Peter

Edited by member 02 Jun 2021 at 21:31  | Reason: Not specified

User
Posted 02 Jun 2021 at 23:48
I am completely continent following my surgery three years ago, but bear in mind ‘continence’ is classed by surgeons as successful if you use one pad a day or less! I have complete erectile dysfunction.

My friend is G 3+4=7 and he has been on AS for five years, and is doing great, with constant PSA testing, annual MRI scans and meetings with his consultant.

Best of luck.

Cheers,

John.

User
Posted 02 Jun 2021 at 23:51
"But then I think that could be risky and it could go outside the prostate wall."

The surgeon can see how close the cancer is to the prostate wall by looking at where in the one positive core the cancer cells are sitting. If the cancer was near the edge, they wouldn't have said you were suitable for AS. If the large prostate is causing symptoms, it seems you will end up having the op sooner or later anyway.

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

User
Posted 03 Jun 2021 at 01:36

As always it's a tricky decision. At your age it would have been more of a surprise if they had not found cancer. The question is whether the cancer is likely to go on and become troublesome. I can guess now that someone has found the cancer you probably think it is a ticking time bomb waiting to go off, well the idea of Active Surveillance is to keep an eye on that time bomb and see if it really is ticking or if the clock has stopped or is running so slowly that it probably ain't going to kill you. Don't forget there are a lot of other ticking time bombs in your body they just haven't been diagnosed yet. Your life expectancy is probably another 20 years, if that cancer isn't doing any harm you can have a lot more fun with your genitals for a few years. 

Dave

User
Posted 03 Jun 2021 at 09:05

Hi Bill

Please see my profile, that includes me and my brother. Your DX/data/history/timeline is probably very similar to my brother.  He decided RT. His mpMRI indicated unifocal.

I had Da Vinci,RARP and complete ly dry in less than 48hrs.

As Lyn asks,any more data? PSA history, have you asked about actual prostate volume etc ?Position of lesion(s)?

My brother had PSA 18 at one point, about 3.0 before HT/RT though. 

It's a tough call, and I see you are working still ?  My decision was a lot easier, ie what treatment type ?

Ie asymtomatic however PSA trend was moving up, more than linear. Single biopsy confirmed multifocal , Gleason 4 + 3.

Ie interim/medium risk.

Have you been offered any other treatment options ?

 

Regards Gordon

  

 

User
Posted 03 Jun 2021 at 13:19
We are all different. I was also 3+4, T2a with a large prostate (but perhaps not as large as yours) and I was 68. However, I had several cores with cancer, and one was fairly close to the edge, so no AS for me. However 7 years earlier the biopsy had shown no cancer at all, so things can change - we don't know if you've had PCa for years and it's not changing, or whether it's happened quite recently.

I think in your case AS seems sensible as you don't know if that small amount of cancer has been around a while, or has only happened recently. If the former, you may be on AS forever. The only reason I can see for an early surgery is if your health isn't great, as the best outcomes are related to health and at our age things are only going one way.

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User
Posted 02 Jun 2021 at 20:35
So you have been on active surveillance for 6 months now - what has happened in that time? Has your PSA risen or stayed stable?

If your consultant thinks you are suitable for AS then you should presume that is correct - you have a Gleason 7 and a T2a staging but we don't know the details - it might be that you only had 5% cancer in one positive core - very different to if you had 50% cancer in more than half of the cores taken. One way or another, you may not be the right kind of personality for AS - some men are very successful with this strategy for many years, others just want to get it cut out. If you do decide to go for surgery, it would be sensible to delay that until the autumn perhaps - enjoy whatever summer we get first and wait for Covid cases to drop further.

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

User
Posted 02 Jun 2021 at 21:28

Hi Bill,

No you aren't always incontinent.  It's usual to be continent within 6 months.   There are unusual cases and it might not be straight forward getting to continence.   Erectile Dysfunction of some kind is likely.

I shared your fear of it spreading.  I was told it was near the edge of the prostate and my Gleason was 7 initially, 4+3 which is worse than 3+4, both being Gleason 7.   After the op it was said to be 4+4, upgrading isn't uncommon.  Gleason 8 is worse than 7.

I was offered Active Surveillance if I had a template biopsy.

The op was the easiest thing I ever did as I was asleep all the time.  There was a couple of months recovery but nothing that concerned me.  You can read the full story on my profile and website.

I would think a psa of 15 would suggest getting on with it, but you say a larger prostate covers some of that.

You might ask where the lesions are and if they're large or near the edge.  T2a suggests they're on one side.   

How is your Gleason made up, 3+4 or 4+3.  Your consultant has made a judgement, you might think if you have AS it might be 3-6 months before you have an op.  If you give the go ahead now it might be a month. 

Sometimes putting off the inevitable seems  a waste of time, although some on here want to keep their existing Quality of Life.   Some worry about their sex lives and others aren't concerned or much prefer preservation.

Without knowing the full details of your situation it's hard to say although I suspect my preference would be to get on with it after thinking dare I wait, dare I look for other treatments.  Changing my mind every day but not changing that I told the doctor to do the op.  It's not an easy decision.

All the best, Peter

Edited by member 02 Jun 2021 at 21:31  | Reason: Not specified

User
Posted 02 Jun 2021 at 23:33

Hi Lynn 

thanks for replying. Sorry I should have given more details. Gleason of 7 is made up of 3+4 which is good. biopsies late last year showed only 1/20 cores involved. MRS pirads score 5. 
I wasn’t sure if they were saying active surveillance because of covid and I did ask. I was assured not. I suppose I will be guided by the surgeon next week. Part of me thinks just get it out and then part of me thinks I feel well and I’m still working just wait. 

User
Posted 02 Jun 2021 at 23:41

Hi Peter thanks for your reply. 

I am fortunate that my Gleason of 7 is made up of 3+4 which is good. biopsies late last year showed only 1/20 cores involved which again is good. The oncologist said he was concerned when he saw my PSA but when he saw the large benign prostate he said that explained the high PSA. He assured me non aggressive but recommended the surgery to get rid of the cancer and the big prostate. I’m sure the surgeon will guide me on urgency but As you say Part of me thinks just get it out and then part of me thinks I feel well and I’m still working just wait. But then I think that could be risky and it could go outside the prostate wall. 
I will definitely ask about the lesion and about the waiting times for surgery. 

sounds like your surgery went well. Best wishes going forward 

User
Posted 02 Jun 2021 at 23:47
Each man is different and I know that my husband could never have contemplated AS but for his dad, it was a really straightforward decision because he was simply not prepared to risk impotence. Only one core out of 20 suggests this is a very small cancer and I do get why you might be wanting to talk to the surgeon about getting on with the op - if you feel that you are just delaying the inevitable or you are feeling anxious, for example. I suppose I was just thinking it has been a dreadful year and what a shame to ruin the summer if you can hold off till Autumn.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Jun 2021 at 23:48
I am completely continent following my surgery three years ago, but bear in mind ‘continence’ is classed by surgeons as successful if you use one pad a day or less! I have complete erectile dysfunction.

My friend is G 3+4=7 and he has been on AS for five years, and is doing great, with constant PSA testing, annual MRI scans and meetings with his consultant.

Best of luck.

Cheers,

John.

User
Posted 02 Jun 2021 at 23:51
"But then I think that could be risky and it could go outside the prostate wall."

The surgeon can see how close the cancer is to the prostate wall by looking at where in the one positive core the cancer cells are sitting. If the cancer was near the edge, they wouldn't have said you were suitable for AS. If the large prostate is causing symptoms, it seems you will end up having the op sooner or later anyway.

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

User
Posted 03 Jun 2021 at 00:12

Totally agree Lynn it has been a horrible year for everyone and I’m worried about incontinence impotence like everyone here. My gut tells me leave it for a while and my head is saying it’s cancer get it out. It could go through the prostate wall. I will have to see what the waiting time because I’m sure there will be a waiting list of some type here. 

I think when the surgeon sees the large benign prostate he may just say get it done get it out. 

User
Posted 03 Jun 2021 at 00:15

Thanks John that’s good news about the continence not so good about the ED. I keep thinking what is the alternative ? Cancer ! 
food news about your friend too who has been on AS for five years. I have heard that quite often. 

thanks to everyone it does help to learn a or other people’s decisions and experiences 

User
Posted 03 Jun 2021 at 01:36

As always it's a tricky decision. At your age it would have been more of a surprise if they had not found cancer. The question is whether the cancer is likely to go on and become troublesome. I can guess now that someone has found the cancer you probably think it is a ticking time bomb waiting to go off, well the idea of Active Surveillance is to keep an eye on that time bomb and see if it really is ticking or if the clock has stopped or is running so slowly that it probably ain't going to kill you. Don't forget there are a lot of other ticking time bombs in your body they just haven't been diagnosed yet. Your life expectancy is probably another 20 years, if that cancer isn't doing any harm you can have a lot more fun with your genitals for a few years. 

Dave

User
Posted 03 Jun 2021 at 09:05

Hi Bill

Please see my profile, that includes me and my brother. Your DX/data/history/timeline is probably very similar to my brother.  He decided RT. His mpMRI indicated unifocal.

I had Da Vinci,RARP and complete ly dry in less than 48hrs.

As Lyn asks,any more data? PSA history, have you asked about actual prostate volume etc ?Position of lesion(s)?

My brother had PSA 18 at one point, about 3.0 before HT/RT though. 

It's a tough call, and I see you are working still ?  My decision was a lot easier, ie what treatment type ?

Ie asymtomatic however PSA trend was moving up, more than linear. Single biopsy confirmed multifocal , Gleason 4 + 3.

Ie interim/medium risk.

Have you been offered any other treatment options ?

 

Regards Gordon

  

 

User
Posted 03 Jun 2021 at 13:19
We are all different. I was also 3+4, T2a with a large prostate (but perhaps not as large as yours) and I was 68. However, I had several cores with cancer, and one was fairly close to the edge, so no AS for me. However 7 years earlier the biopsy had shown no cancer at all, so things can change - we don't know if you've had PCa for years and it's not changing, or whether it's happened quite recently.

I think in your case AS seems sensible as you don't know if that small amount of cancer has been around a while, or has only happened recently. If the former, you may be on AS forever. The only reason I can see for an early surgery is if your health isn't great, as the best outcomes are related to health and at our age things are only going one way.

User
Posted 05 Jun 2021 at 06:11

Thank you to everyone for sharing your experiences and thoughts for me going forward. 
 
A couple of you referred to fitness and I would say I am an active fit man - at now 67. My work is physical and I want to keep working as long as i can but I’m fortunate to be self employed. 

Peter we do sound similar in our journey. I had a turp 6 years ago and biopsies 3 years Ago showed no cancer but you have several cores where I have 1.

Gordon my PSA was high before TURP and came back down but  has been going up every year but oncologist said large benign prostate will do that too. I will definitely have a look at your profiles. Im not suitable for brachytherapy  Oncologist discussed RT but said with size of prostate best to get it out as if I had RT first I then can’t get the prostate out. 

Dave if I thought I need do nothing and had 20 years of more fun I would be delighted. I think it is the ticking time bomb thing. But as you say what other ticking time bombs do we not know about in our bodies. 

thank you all it has given me some pointers for discussion with Surgeon

 

User
Posted 05 Jun 2021 at 09:29
Think long & hard, about RT & HT as well. That is my tip.
User
Posted 05 Jun 2021 at 11:07

Hi Bill

Thanks for update, as Bob says consider other options.  If you are self employed and physical lifting, budget for  at least 4 months full recovery. Ok you can be up and about in a few days.  Surgery has been extremely positive for me. Took me about 2 weeks to tie by shoe laces...lol..

'Ballpark'. Maybe not the right term to use..   you need to give yourself 6 weeks, chill out, hobbies etc .

Regards Gordon

 

 
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