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Active surveillance or Radical prostatectomy

User
Posted 15 Jul 2022 at 16:11

Hi,

I was diagnosed one month ago.

My PSA reading was 4 and my doctor said its not cancer but i wanted to see a consultant which i did. I had an mri which showed an abnormality, i then had a biospy which came back as cancer 3+4 on the Gleason scale. My consultant said straight away surgery which being me im like i just want it out. Im fit and healthy, i run and workout so thought yeah I'll be ok. Anyway, i just had my appointment yesterday and was told that my cancer has been downgraded to 3+3 which just throqs another thing in the mix for my mind to get round. Im still in the mindset that i want this out of me. The urologist has said its up to me but told me to do active surveillance and that i can opt for surgery anytime.

The thing is, the urologist told me to have a couple years of living life before making a decision but i am worried that its still there and while i am on AS, i still have cancer which might spread and get missed.

I understand all about ED and incontinence etc...and had started PFE in anticipation of surgery.

I wish my consultant didn't even say anything about surgery and just left it to the urologist

My family are supportive and are with me either way.

Thanks and sorry for the long post

Edited by member 16 Jul 2022 at 09:34  | Reason: Dont want my family seeing my financial and mental worries

User
Posted 15 Jul 2022 at 23:20

Ok 43 is young, but it happens. Don't worry too much about living with cancer inside of you. I can assure you that from the day you were born you had a finite life. So any thought that you were somehow pure was a misconception. 

The side effects of treatment are not great, probably not too bad, but best avoided for as long as possible.

Now your cancer has been downgraded to G6 be happy, live a happy life, keep an eye on it and when it becomes a problem get it treated. At the moment you don't have a serious problem so don't worry about it.

 

Dave

User
Posted 16 Jul 2022 at 08:11
Get a second opinion on the downgrade, it's vital for AS they have this correct. Challenge why it was downgraded, be wary of "he is too young to have any 4 disease".

Maybe look at focal treatment too.

User
Posted 16 Jul 2022 at 10:01

I'd want to get fully  sure about the downgrade of your Gleason. The difference between 3+3 and 3+4 Gleason can make things different.

Your are young and these days, thanks to advanced techniques, diagnosis and prediction can offer more precise information before going for AS or taking the issue more seriously.

Edited by member 16 Jul 2022 at 10:04  | Reason: Typo

User
Posted 25 Jul 2022 at 11:53

I would also echo Lynn's sentiments. Live your life, speaking from experience - post surgery Gleeson 3+4, I would not advice anyone to undertake surgery needlessly. I am 57, 9weeks post-surgery, continent in the day, but not so much at night. Erection, non-existent, despite using 100mg viagra. Both nerves sparred, was told even with that only 20% regain erection (of some sort). If I had been offered AS, would have bitten their hand off. One thing, we easily gloss over is the Quality of life post surgery and its effects long term.

User
Posted 26 Jul 2022 at 00:47

Hi Eli

I’ve been on a similar journey and it’s a head spinner.

Check out my thread as might help with context around the surgical route. I’m lucky as found a high volume surgeon who is a pioneer in the field….

Be mindful that with post surgery histology ~45% of Gleason scores are upgraded. In my case as I was Gleason 6 (3+3) post biopsy with all 4 quadrants of prostate involved and some tumour close to breaking out from the prostate capsule.

Options presented to me were active surveillance or surgery. Was also told there was not urgency. I went away and spoke with my ex who is an immunologist in this field, read lots of research online about type 3 tumours and probability of METS etc Plus did some digging in terms of high volume surgeons and spoke to folks who had been on a similar journey.

In my case my Gleason 6 probability of upgrade was around 60% and it’s turned out just that as post surgery histology came back as Gleason 7 (3+4). 

Plus looking at fairly recent research it would appear even type 3 tumours can migrate although less so that more advanced types. In my case I decided to get it out without delay…..and I’m pleased I did as it was very close to breaking out of the capsule and being classified as more advanced had I waited.

Post biopsy I spoke to a number of post op patients that found a high volume surgeon and had very good results with a surgical approach known as ‘Retzius sparing’…basically the surgeon avoids disrupting as much of the nerves around the bladder as possible which helps with early return of continence. Plus NeuroSAFE which uses real time pathology whilst you are in surgery to determine safe margin so there is an opportunity to preserve the nerves associated with erections should it be safe to do so. It’s worth checking re: NeuroSAFE as I think this is only available privately although some NHS sites are trialing it as it’s under review with NICE. 

to date I’ve had an outcome that exceeded my expectations. Continence pretty much normal but I do get the odd drip or squirt every few months mainly after a barrel of beer. Nocturnal continence almost 100% Had three mishaps in three years….two after a loads of beer and one fairly random which was more of a leak. Wine mitigates the first two :-) 

If you choose to go down the surgical route I recommend checking out Retzius Sparing Robotic Assisted Radical Prostatectomy + NeuroSAFE. Find a high volume surgeon who is a ninja in their field to give you the best chance of a good outcome.

I have no regrets and 2yrs 8months after surgery (Guys Cancer Centre in London)as living a normal life doing lots of weight training at the gym and never give my bladder a second thought other than having a tactical pee beforehand. I’m massively fortunate in having found a pioneering Professor to do the work. 

On the erection front I’m lucky as can have penetrative sex without medication but if tired I just pop 2.5mg tadalafil to help with the last ~20%

Best of luck and please feel free to ask any questions that you might have.

Simon

Edited by member 26 Jul 2022 at 07:49  | Reason: Not specified

User
Posted 26 Jul 2022 at 10:38

NeuroSafe is available on the NHS at The Lister hospital in Stevenage. I had my op there last November by a high volume surgeon. Both nerve bundles were spared following the in op. confirmation of clear margins.

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User
Posted 15 Jul 2022 at 23:20

Ok 43 is young, but it happens. Don't worry too much about living with cancer inside of you. I can assure you that from the day you were born you had a finite life. So any thought that you were somehow pure was a misconception. 

The side effects of treatment are not great, probably not too bad, but best avoided for as long as possible.

Now your cancer has been downgraded to G6 be happy, live a happy life, keep an eye on it and when it becomes a problem get it treated. At the moment you don't have a serious problem so don't worry about it.

 

Dave

User
Posted 16 Jul 2022 at 08:11
Get a second opinion on the downgrade, it's vital for AS they have this correct. Challenge why it was downgraded, be wary of "he is too young to have any 4 disease".

Maybe look at focal treatment too.

User
Posted 16 Jul 2022 at 10:01

I'd want to get fully  sure about the downgrade of your Gleason. The difference between 3+3 and 3+4 Gleason can make things different.

Your are young and these days, thanks to advanced techniques, diagnosis and prediction can offer more precise information before going for AS or taking the issue more seriously.

Edited by member 16 Jul 2022 at 10:04  | Reason: Typo

User
Posted 25 Jul 2022 at 11:53

I would also echo Lynn's sentiments. Live your life, speaking from experience - post surgery Gleeson 3+4, I would not advice anyone to undertake surgery needlessly. I am 57, 9weeks post-surgery, continent in the day, but not so much at night. Erection, non-existent, despite using 100mg viagra. Both nerves sparred, was told even with that only 20% regain erection (of some sort). If I had been offered AS, would have bitten their hand off. One thing, we easily gloss over is the Quality of life post surgery and its effects long term.

User
Posted 26 Jul 2022 at 00:47

Hi Eli

I’ve been on a similar journey and it’s a head spinner.

Check out my thread as might help with context around the surgical route. I’m lucky as found a high volume surgeon who is a pioneer in the field….

Be mindful that with post surgery histology ~45% of Gleason scores are upgraded. In my case as I was Gleason 6 (3+3) post biopsy with all 4 quadrants of prostate involved and some tumour close to breaking out from the prostate capsule.

Options presented to me were active surveillance or surgery. Was also told there was not urgency. I went away and spoke with my ex who is an immunologist in this field, read lots of research online about type 3 tumours and probability of METS etc Plus did some digging in terms of high volume surgeons and spoke to folks who had been on a similar journey.

In my case my Gleason 6 probability of upgrade was around 60% and it’s turned out just that as post surgery histology came back as Gleason 7 (3+4). 

Plus looking at fairly recent research it would appear even type 3 tumours can migrate although less so that more advanced types. In my case I decided to get it out without delay…..and I’m pleased I did as it was very close to breaking out of the capsule and being classified as more advanced had I waited.

Post biopsy I spoke to a number of post op patients that found a high volume surgeon and had very good results with a surgical approach known as ‘Retzius sparing’…basically the surgeon avoids disrupting as much of the nerves around the bladder as possible which helps with early return of continence. Plus NeuroSAFE which uses real time pathology whilst you are in surgery to determine safe margin so there is an opportunity to preserve the nerves associated with erections should it be safe to do so. It’s worth checking re: NeuroSAFE as I think this is only available privately although some NHS sites are trialing it as it’s under review with NICE. 

to date I’ve had an outcome that exceeded my expectations. Continence pretty much normal but I do get the odd drip or squirt every few months mainly after a barrel of beer. Nocturnal continence almost 100% Had three mishaps in three years….two after a loads of beer and one fairly random which was more of a leak. Wine mitigates the first two :-) 

If you choose to go down the surgical route I recommend checking out Retzius Sparing Robotic Assisted Radical Prostatectomy + NeuroSAFE. Find a high volume surgeon who is a ninja in their field to give you the best chance of a good outcome.

I have no regrets and 2yrs 8months after surgery (Guys Cancer Centre in London)as living a normal life doing lots of weight training at the gym and never give my bladder a second thought other than having a tactical pee beforehand. I’m massively fortunate in having found a pioneering Professor to do the work. 

On the erection front I’m lucky as can have penetrative sex without medication but if tired I just pop 2.5mg tadalafil to help with the last ~20%

Best of luck and please feel free to ask any questions that you might have.

Simon

Edited by member 26 Jul 2022 at 07:49  | Reason: Not specified

User
Posted 26 Jul 2022 at 06:20
If you are using the NHS and are told they will do nerve sparing do not rely on it. OH was supposed to be nerve sparing 1 side. The hospital was also not good as he picked up a UTI there and otherwise came home mentally and physically a complete wreck.

After the diagnosis we had a short meeting with one of the nurses. I was told I would not need to take any holidays to look after OH. Wish I had ignored that advise, working full time (from home) and looking after OH was exhausting.

Have you looked at other treatment options?

Wishing you all the best

User
Posted 26 Jul 2022 at 08:49
In fairness, DW, no surgeon, whether NHS or not, can guarantee that surgery is going to be nerve sparing. They can't tell for sure where the cancer is until they open you up and take a look. If there's cancer near the nerve bundles, the nerves have to go.

Best wishes,

Chris

User
Posted 26 Jul 2022 at 10:38

NeuroSafe is available on the NHS at The Lister hospital in Stevenage. I had my op there last November by a high volume surgeon. Both nerve bundles were spared following the in op. confirmation of clear margins.

 
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