completely terrified and distraught

User

Posted 27 Dec 2023 at 15:27

The problem is that everyone is different and their bodies react in different ways, but also the way we react mentally to the issues varies too.

My RARP went 100 times better than I was anticipating because naturally you always think the worst. It wasn't particularly painful or even uncomfortable for very long once the shoulder pain had gone from the CO2 inflation of the abdomen. Nothing paracetamol couldn't fix.

The catheter was awkward for 7 days but removal was painless.

The post op side effects of incontinence were mild - just dribbles and I still get caught out with a cough but I have sneezing down to a T :)

In my case it was non-nerve sparing so no more natural erections but having a chat with my consultant about invicorp for the occasional use next week. We still have a lot of fun when the mood takes us :)

But that was just me - other people may/have/will react differently and even though I may still need salvage RT - knowing that the darn thing is out of me is so very much worth it.

User

Posted 27 Dec 2023 at 15:50

thank u very much

and What thoughts do you have about the cure and survival rates of a gleason 6?

User

Posted 27 Dec 2023 at 15:56

Originally Posted by: Online Community Member

One says that the success rates for incontinence and ED are approximately 90%

The published outcomes in Spain may vary a little from the UK but I can't imagine there is a huge difference. The NHS data for either full or partial nerve-sparing RP indicates that:

- 90% of men can get an erection by 12 months post-op, either naturally or using chemical / mechanical assistance

- 60% of men can get a natural erection by 24 months post-op (although there is no information about whether this is firm enough for penetration)

- 90% of men are continent by 12 months post-op (although the NHS definition of 'continent' is 'using one pad per day or less' ... many men who have to use pads would not say that they consider themselves 'continent')

So the stats your urologists are quoting seem fairly consistent with the above - it is the background context that they are perhaps not spelling out for you.

Interesting comment from the urologist who says that he can do better with the naked eye than a robot can. There isn't any NHS data for that but there is indicative data that suggests recovery of erectile function and bladder control is still slightly better with open surgery than with robotic. However, the % difference is now so small that it hardly counts and open RP does increase other potential risks.

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

User

Posted 27 Dec 2023 at 16:02

The urologist who has better results with laparoscopy 
than many others who do robot-assisted laparoscopy,
also says that he can operate on me with a robot
and that if it already has very good continence and ED rates,
then if you add the robot to it they will be better still.
Robotic surgery is not a new surgery but rather the robot is a tool
that is the ideal tool for the prostate specifically.
What do you mean that they are not explaining the context well to me?
What do you think of the cure and survival rates for a gleason 6?

User

Posted 27 Dec 2023 at 18:16

Originally Posted by: Online Community Member

What thoughts do you have about the cure and survival rates of a gleason 6?

One study quotes that 98.4% of men had survived 10 years after a Gleason 7 diagnosis with ages from 40-60. So G6 is likely to be better than that.

Edited by member 27 Dec 2023 at 18:19 | Reason: Not specified

User

Posted 28 Dec 2023 at 09:38

I opted for surgery with Gleason 7 (3+4) so it hadn't escaped the prostate capsule.

No guarantees were given regarding nerve sparing, but surgeon said they would try, subject to what was found on the day, so I was prepared and accepted that incontinence and ED may be the outcome.

I had the surgery in June 23 aged 62, nerves were successfully spared.

Catheter removed after 11 days, mainly continent immediately, no significant pain throughout the process from surgery to being back mobile, just a little discomfort for a week or two and gently building up activities over the next 3 months.

I'm just on six months since the surgery and there are no obvious signs that I have "had" prostate cancer and the indications are that it will be unlikely to return (so far so good). I've returned to work and everything else is functioning as if it never happened.

Each of us are different and will have different experiences given our starting point at diagnosis and options available; however I am happy with the choice I made.

User

Posted 28 Dec 2023 at 11:24

Originally Posted by: Online Community Member

Fantastic result Mark. I'm very pleased for you. 👍

Adrian

Edited by member 28 Dec 2023 at 12:09 | Reason: Typo

User

Posted 28 Dec 2023 at 12:25

Great news... Mark34 so not incontinence and ED??

Edited by member 28 Dec 2023 at 12:27 | Reason: Not specified

User

Posted 28 Dec 2023 at 13:10

Originally Posted by: Online Community Member

Great news... Mark34 so not incontinence and ED??

I just followed the advice re exercises etc. and all has turned out to be good, so no incontinence or ED.

User

Posted 28 Dec 2023 at 13:17

I am extremely happy and it gives me strength to decide the best option for me.

It is incredible how the same treatment has such different results in people.

User

Posted 28 Dec 2023 at 15:30

Originally Posted by: Online Community Member

What do you mean that they are not explaining the context well to me?

Just that perhaps when the surgeon quoted to you that he has a 90% success rate with continence and ED, what he might have meant is that 90% of his patients are using one pad per day or less and 90% of his patients can get an erection but most of them need a vacuum pump, tablets or injections to do so.

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

User

Posted 28 Dec 2023 at 15:49

In that case and in my opinion...
then in addition to not calling things by their true name,
they are cheaters...

Originally Posted by: Online Community Member

What do you mean that they are not explaining the context well to me?

User

Posted 28 Dec 2023 at 16:05

In that case and in my opinion...

then in addition to not calling things by their true name,

they are cheaters...

User

Posted 28 Dec 2023 at 16:25

Originally Posted by: Online Community Member

In that case and in my opinion...
then in addition to not calling things by their true name,
they are cheaters...

In your comment ' not calling things by their true name' You have have highlighted a problem with accurately defining things.

For example. What's an erection?

Something you can do 'naturally'? Something slightly better than being flaccid? Something you can achieve with mechanical or chemical assistance? Something that can be used for penetrative sex? Or something that you can crack toffee with?

Edited by member 29 Dec 2023 at 01:56 | Reason: Not specified

User

Posted 28 Dec 2023 at 16:38

What one hopes at least... is to remain the same as they were before the surgery

or with a minimal impact on their quality of life.

User

Posted 28 Dec 2023 at 16:50

Originally Posted by: Online Community Member

What one hopes at least... is to remain the same as they were before the surgery
or with a minimal impact on their quality of life.

If everyone ended up as good, or nearly as good, as they were before prostate cancer, I doubt they'd be a need for this site. That's the reality of the situation.

User

Posted 28 Dec 2023 at 17:17

The reality of the current situation,

in my opinion, is that unfortunately despite robotic surgery even in expert hands

and the most advanced radiotherapy, much progress still needs to be made

to minimize the impact on the quality of life of patients.

User

Posted 29 Dec 2023 at 01:43

Originally Posted by: Online Community Member

What one hopes at least... is to remain the same as they were before the surgery
or with a minimal impact on their quality of life.

It is rare for a man to remain the same as before the RP - even if he can get an erection strong enough for penetration, there is the dry orgasms and (for most men) smaller penis to contend with. And some men will be continent almost all of the time but leak urine during sexual intercourse.

Originally Posted by: Online Community Member

The reality of the current situation, in my opinion, is that unfortunately despite robotic surgery even in expert hands and the most advanced radiotherapy, much progress still needs to be made to minimize the impact on the quality of life of patients.

This is cancer, even if it is a fairly common one. Surely the focus has to be on successfully treating the cancer? A man who is more concerned about the side effects than he is about the cancer does have options - green laser light, cryotherapy, nanoknife all have fewer side effects although they may need to be repeated 2 or more times as recurrence rates can be higher

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

User

Posted 29 Dec 2023 at 01:52

Originally Posted by: Online Community Member

they are cheaters...

I don't think they are cheaters - just that the medical definition of a word or the criteria used to define a situation can be different to what the lay person might imagine. Also, I did say that these are the NHS definitions and it might be different in Spain. Perhaps when a Spanish urologist says that he has a 95% success rate with ED / continence, he really means it? It would be surprising if Spain is getting remarkably better results than other countries though - I have read that ED is a problem for 60% of American men post-RP.

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

User

Posted 29 Dec 2023 at 07:57

You are probably right, many times we forget the primary effect (cancer)
and focus on the secondary ones, due to that desperation eager to cure
ourselves without sequelae or with the minimum possible.
I understand that in relation to having a Gleason 6
or a higher grade it does not make a difference and there are no advantages
in the impact of continence/ED (even preserving the nerves responsible for the erection)
since the procedure for remove it is the same in the case of robotic surgery.

Edited by member 29 Dec 2023 at 07:58 | Reason: Not specified

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