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User
Posted 14 Oct 2016 at 09:21

As a long-time lurker I’ve decided to break cover, and in so doing acknowledge with thanks the tremendous reservoir of knowledge, experience and even wisdom I’ve found on these pages since my journey began.


I find that no matter how helpful and expert the medical and clinical staff are (and mine have been exemplary) there’s an element of insight that can’t be got other than through/with fellow sufferers and those closest to them. I’ve definitely benefited from that and am grateful to all of you who have facilitated it, and I imagine there’s lots like me who’ve been content to absorb and learn rather than contribute, so thanks from all of us like me.


I’ve added my story to my bio. I personally like to read detail and I think I lack the filter that stops people going on an on. Sorry about that, but sometimes the details matter. In summary:


I’m 55 and was diagnosed in June with Prostate cancer. PSA 3.3, Gleason 7 (4+3) T2 N0 Mx. 4 of 5 cores in Left Lobe cancerous, 0 of 5 cores in Right Lobe cancerous. I underwent robot assisted RP in August, and have just this week had the follow up and learned PSA undetectable and histology confirming Gleason unchanged, with clear margins all round the tumour and no nodal involvement. Next test 4 months.


I’m delighted with it all so far (as I tend to imagine/expect the worst) as I am with my almost complete urinary control, and the utterly surprising but very welcome return of other function despite the process not sparing the nerve bundles. I do know it’s only the start and not everyone is so lucky so quickly, so apologies if I sound a little over pleased with myself.

User
Posted 14 Oct 2016 at 09:21

As a long-time lurker I’ve decided to break cover, and in so doing acknowledge with thanks the tremendous reservoir of knowledge, experience and even wisdom I’ve found on these pages since my journey began.


I find that no matter how helpful and expert the medical and clinical staff are (and mine have been exemplary) there’s an element of insight that can’t be got other than through/with fellow sufferers and those closest to them. I’ve definitely benefited from that and am grateful to all of you who have facilitated it, and I imagine there’s lots like me who’ve been content to absorb and learn rather than contribute, so thanks from all of us like me.


I’ve added my story to my bio. I personally like to read detail and I think I lack the filter that stops people going on an on. Sorry about that, but sometimes the details matter. In summary:


I’m 55 and was diagnosed in June with Prostate cancer. PSA 3.3, Gleason 7 (4+3) T2 N0 Mx. 4 of 5 cores in Left Lobe cancerous, 0 of 5 cores in Right Lobe cancerous. I underwent robot assisted RP in August, and have just this week had the follow up and learned PSA undetectable and histology confirming Gleason unchanged, with clear margins all round the tumour and no nodal involvement. Next test 4 months.


I’m delighted with it all so far (as I tend to imagine/expect the worst) as I am with my almost complete urinary control, and the utterly surprising but very welcome return of other function despite the process not sparing the nerve bundles. I do know it’s only the start and not everyone is so lucky so quickly, so apologies if I sound a little over pleased with myself.

User
Posted 14 Oct 2016 at 13:02

Hi Chris
Thanks for the comments, and I'm really intrigued to hear your characterisation of 'supposedly' non-nerve sparing. That's the second person today I've heard with a similar story, so there are 3 of us already with what I imagined was a very rare outcome. I have spoken to a neurologist who says that nerve fibres are notoriously difficult to isolate, and nerve function can recover by small, even tiny, nerve tissues stepping up and doing the job previously done by larger nerve bundles. He was talking about neurology in general and spinal cord regeneration in particular, but said same rules apply elsewhere. Early days for me, but let's see?

On the work front, I had read a lot about psychological recovery being as big a challenge as physical recovery, and I decided the best route for me was to get back as close to normal activity as quickly as possible. Less time to think, maybe. It's helped by my job being non-physical and by being able to set the tempo entirely as it suited, so by no means was I doing the same hours/day or per week as pre-op. I left if I was tired and started late if it suited. I also didn't travel far at all which helped - I wouldn't have been able to do that.

We're all different, aren't we, and we fumble forward as best we can without really knowing if it was the right choice or wrong choice, but hoping for the best outcome in the end.

User
Posted 14 Oct 2016 at 18:14
Hi Ian
I feel exhausted just reading your profile but what a very interesting read. It is great to have such a spectrum of experiences for people to be able to read as it really does underline the fact that everyone has such different outcomes from similar treatments. I am so pleased that things are going so well for you particularly at your age. Long may it continue and I am sure that there will be many others who will take some comfort from your story as we don't always hear about the "success" stories so this is most welcome.
Thanks for sharing and best wishes to you and your family.

Kevan
User
Posted 14 Oct 2016 at 19:29

Great news - way to go!


Flexi

User
Posted 15 Oct 2016 at 09:23
Well done Ian

Always nice to read good news.

Good luck for future

KRO...
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User
Posted 14 Oct 2016 at 12:34
S

Just read your post and profile, it sounds like everything op wise has gone well. One query back at work after 4 "days" that is incredible. I was back after 4 weeks and thought I had done well, I know of guys who had a week off after the biopsy.

I often describe myself as "supposedly" non nerve sparring, like you I was told no nerves spared but I do get about 70 of the swelling I got pre op,sadly it does not stand to attention. My surgeon explained it in a similar way as yours,something must have survived.

Good news on the continence that can be demoralising.

Hope all progresses in the right direction.

Thanks Chris

User
Posted 14 Oct 2016 at 13:02

Hi Chris
Thanks for the comments, and I'm really intrigued to hear your characterisation of 'supposedly' non-nerve sparing. That's the second person today I've heard with a similar story, so there are 3 of us already with what I imagined was a very rare outcome. I have spoken to a neurologist who says that nerve fibres are notoriously difficult to isolate, and nerve function can recover by small, even tiny, nerve tissues stepping up and doing the job previously done by larger nerve bundles. He was talking about neurology in general and spinal cord regeneration in particular, but said same rules apply elsewhere. Early days for me, but let's see?

On the work front, I had read a lot about psychological recovery being as big a challenge as physical recovery, and I decided the best route for me was to get back as close to normal activity as quickly as possible. Less time to think, maybe. It's helped by my job being non-physical and by being able to set the tempo entirely as it suited, so by no means was I doing the same hours/day or per week as pre-op. I left if I was tired and started late if it suited. I also didn't travel far at all which helped - I wouldn't have been able to do that.

We're all different, aren't we, and we fumble forward as best we can without really knowing if it was the right choice or wrong choice, but hoping for the best outcome in the end.

User
Posted 14 Oct 2016 at 18:14
Hi Ian
I feel exhausted just reading your profile but what a very interesting read. It is great to have such a spectrum of experiences for people to be able to read as it really does underline the fact that everyone has such different outcomes from similar treatments. I am so pleased that things are going so well for you particularly at your age. Long may it continue and I am sure that there will be many others who will take some comfort from your story as we don't always hear about the "success" stories so this is most welcome.
Thanks for sharing and best wishes to you and your family.

Kevan
User
Posted 14 Oct 2016 at 18:47
S

Prior to my op, my surgeon said his job was to get rid of the cancer and there was too much disease to save the nerves. My Second opinion surgeon said he might be able to save one side but no guarantees. I went with my original surgeon and had the DaVinci op.

A few weeks post op the ED consultant prescribed 4 sildenafil, a couple of weeks later my surgeon said it was a waste of time as there were no nerves. Hence my description as being "supposedly" non nerve sparring.

12 months on from the op I told my surgeon I was getting stirrings and he put me on daily sildenafil. They do have some effect but nothing like they would on a healthy male. It has been pointed out a few times that the oral medication only work if you have nerves.



Thanks Chris
User
Posted 14 Oct 2016 at 19:29

Great news - way to go!


Flexi

User
Posted 15 Oct 2016 at 09:23
Well done Ian

Always nice to read good news.

Good luck for future

KRO...
 
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