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RP December 16th 2019

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User
Posted 04 Mar 2020 at 18:03
User
Posted 04 Mar 2020 at 18:30
Brilliant
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Mar 2020 at 20:44

Great news. Very pleased for you.

Ido4

User
Posted 05 Mar 2020 at 08:43

Thanks for all the input everyone

User
Posted 27 Mar 2020 at 16:14
14 weeks post RARP. Just received my follow up appointment with the surgeon all be it was by telephone due to Covid 19 virus. he confirmed my PSA was actually undetectable being less than 0.007. He now does not what to see me for 4 month. Apart from a scare a few days ago when I had some pain in my left side followed by a bit of blood in my urine the following day ,I am now back to normal and pretty much back to where I was fitness wise before the operation. I still think there is a small improvement in the continence situation and the surgeon believes I could have full continence in about 6 months. So all good so far. On the ED .I am still as dead as a dodo and therefore he has started me on Celias but as yet have not received the tablets. All in all I am very pleased with the outcome so far and as yet nothing seems to have bothered me to much. I am currently sitting at home and due to my wife having MS we are self Isolating, although we do go out for walk every few days to stretch our legs. Just like to wish everyone good luck and we all stay safe from this dreadful virus
User
Posted 27 Mar 2020 at 17:01
Great news - stay safe
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jul 2020 at 15:41
7 months post op. Down to 1 small pad per day. None at all if staying at home. Its taken a while but can still see small improvement as time go by. Still got erectile Dysfunction but beginning to get small stirrings. To be fair I needed to take Viagra before RARP so not expecting great leaps on that score. I have a follow up appointment with the nurse next week after just receiving the results of latest PSA. The same as last time 4 months ago. 0.007. I know this is very low but I was more concerned regarding rate of the rise. As this is zero rise over 4 months, how much confidence can I take in being in remission? (longer the better) rather than saying actually cured.
User
Posted 16 Jul 2020 at 16:05

Hi Dave

Great to hear you’re making good progress. After such a major operation it’s going to take time I think. I had a fairly quick good outcome But have had one or two issues with voiding which I’ve self resolved but it’s to be expected with everything healing after the trauma of surgery. Yes the best way to view PSA I think is remission when it’s affectively zero in your case. Your numbers are fairly similar to mine and they’re very encouraging and a lot of people so cured But with cancer you never quite know. My view is at the very least it’s bought us time so that the science Can catch up and if the sinister symptoms return there could be potentially more options on the table.

TG

User
Posted 16 Jul 2020 at 16:38

Thanks for your reply and good to hear from you again and a great outlook too. For the record what is voiding?

User
Posted 16 Jul 2020 at 17:03

Hi Dave, 

Pleased to hear that you're making good progress. I think it's equally important to be able to see those improvements, no matter how painfully slow they might seem sometimes. 

Great to see another low PSA result too!

TG makes a very good point about cancer, remission and buying time for science to catch up.. I feel the same.

Good luck, 

Kev.

Edited by member 16 Jul 2020 at 17:09  | Reason: Fat thumbs!

User
Posted 16 Jul 2020 at 17:12

Hi Dave

 Voiding is emptying bladder or peeing :-) Could of issues where I could only got very little for a few days. Looks like the trigger was strong coffee. Was a little stressed as occurred month 6 post op and quite unexpected. The treatment was a good white wine until the bladder valve relaxes 😎🤓🤖 Works well but now changed by morning coffee to morning hot chocolate and everything all good since 😃

the prof said my valve-brain connection is effectively remapping it’s neural pathways so not unusual. Can take a year or so for these things to relearn and settle so was reassuring to have this knowledge.

TG

User
Posted 16 Jul 2020 at 17:30
I always had problems totally MTing my bladder 400ml remaining before the operation together with poor flow. This was two of the reasons I opted for RARP. since the operation I don't have any problems however I have not had my bladder scanned since TWOC.
User
Posted 16 Jul 2020 at 17:31

Thanks for your input Kev.

User
Posted 16 Jul 2020 at 19:30

With a psa that low you should be singing in the rain.   

I had my op 16th Dec 2016 and in April 2017 I bought 30 pads as it seemed a good saving and I still needed them.   Then it suddenly got a lot better and in early May I noted I hardly needed to wear them except for stress leakage.   I ended up giving about 20 pads, they're in 10s in a Boots 30 pack, to a charity shop. 

Although there were residual problems.  One was leaking when I'd just been, fasten up and feel a dribble.  I didn't know it was fairly common but the hospital sent round a questionnaire and that was one of the things it asked.  Until then I thought it was just me.   That seemed to clear up after about 2 1/2 years.

The other is a small leak when first aroused.  That still happens.  Although I've still got about 40% ED.

Stress leakage can still happen if I get home wanting to go to the loo and bend down to take off my shoes for example.  It's very rare.

 

User
Posted 17 Jul 2020 at 11:00

Peter thanks for your imput which was very helpful. I think my symptoms are very similar regarding leakage, especially when aroused. Hopefully it will improve with time I will now exercise a bit more patience. I have a follow up appointment next week and hopefully get some advice regarding ED. Good luck with the future and keep in touch. Regards Dave.

 

 
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