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My experience update

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User
Posted 16 Aug 2019 at 12:30

Hi. 

It’s been a while since I’ve posted anything. 

It’s now been 14 months since my surgery and since then my PSA has remained less than 0.04. I had my last 3 monthly appointment in June and to hear the words “you’re cured” was such a big relief.  With regard to incontinence this has greatly improved whereby I no longer have to use pads, occasionally get a little dribble when I cough or sneeze but I can live with that. My ED issues have been a little more stressful and frustrating. I arranged an appointment with the men’s specialist health nurse at my hospital and he was very supportive and understanding. He started me on a course of Tadalafil and a pump. I found that the Tadalafi gave me side effects and was not effective in obtaining an erection and the pump was very much a passion killer although I still us now for penile exercise. I was then offered Caverject injections and after a couple of tryouts they have been very successful. My next appointment is in 6 months time and hoping everything will still be ok. I’m sorry if I’ve rambled on a bit but I just wanted to share my experiences. It has been a bit of a journey but I now see that light at the end of the tunnel thanks to all the support from the health professionals, my family and most of all my wife. 

User
Posted 16 Aug 2019 at 12:30

Hi. 

It’s been a while since I’ve posted anything. 

It’s now been 14 months since my surgery and since then my PSA has remained less than 0.04. I had my last 3 monthly appointment in June and to hear the words “you’re cured” was such a big relief.  With regard to incontinence this has greatly improved whereby I no longer have to use pads, occasionally get a little dribble when I cough or sneeze but I can live with that. My ED issues have been a little more stressful and frustrating. I arranged an appointment with the men’s specialist health nurse at my hospital and he was very supportive and understanding. He started me on a course of Tadalafil and a pump. I found that the Tadalafi gave me side effects and was not effective in obtaining an erection and the pump was very much a passion killer although I still us now for penile exercise. I was then offered Caverject injections and after a couple of tryouts they have been very successful. My next appointment is in 6 months time and hoping everything will still be ok. I’m sorry if I’ve rambled on a bit but I just wanted to share my experiences. It has been a bit of a journey but I now see that light at the end of the tunnel thanks to all the support from the health professionals, my family and most of all my wife. 

User
Posted 16 Aug 2019 at 23:56

It’s all about  where are you go from the end of your treatment. At the 18 month point the nurse told me I was cured as my PSA was less than 0.1. But as other posts on this site show The word cured should not be used lightly in my opinion. I like to consider myself as in remission.  I am just about to stop hormone therapy in October and the next six months will be the most nervous since I got my diagnosis of Gleason 9 T2c

 

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User
Posted 16 Aug 2019 at 22:47

Good result Davey.    ED can take time, must admit I've had no treatment and it's still improving, although not too great after 33 months.  I like to tell myself I haven't got it now until I start thinking about it a few weeks before the next test.  Regards Peter

User
Posted 16 Aug 2019 at 23:56

It’s all about  where are you go from the end of your treatment. At the 18 month point the nurse told me I was cured as my PSA was less than 0.1. But as other posts on this site show The word cured should not be used lightly in my opinion. I like to consider myself as in remission.  I am just about to stop hormone therapy in October and the next six months will be the most nervous since I got my diagnosis of Gleason 9 T2c

 

User
Posted 17 Aug 2019 at 07:31
If you can be bothered to check how ‘cured’ you are you could put your case details into a nomogram to give you the statistical likelihood of biochemical recurrence (aka The Buggers Back), such as this one from the Memorial Sloan Kettering Hospital in the States:

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

Best of luck anyway, and I hope we both are cured (no inverted commas).

Cheers, John.

User
Posted 17 Aug 2019 at 10:20

I tried the prediction utility and out of interest went back and changed my input a few times and interestingly I got the same results 

User
Posted 17 Aug 2019 at 10:57

Hi. 

Thanks for the replies. I am keeping an open mind regarding being told “you’re cured”. I know I’m still on this journey and there is still a long way to go yet. 

Thanks again  

 

 
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