What next? 50 and no erection.

User

Posted 01 Apr 2017 at 10:07

It is rather disappointing that the messaging and follow-up on ED is so varied and inconsistent. Another postcode lottery issue. If if wasn't for this site I wouldn't have been as well prepared for my op and what to ask for. I'm 2 weeks post Op and I was prescribed 50mg daily sildenafil after my catheter was removed last week. I asked the nurse about the 5mg Cialis vs 50mg Sildenafil and she had no input. I live in East Kent and I'm assuming it's a lot cheaper to prescribe the generic.

Even though it's too early to make a call on the effectiveness, as Lynn said, the Sildenafil has no effect if not aroused. I will definitely be asking to try the other options.

In a pre-op clinic there was a mention of pumps, but nothing has been mentioned post-op. I will phone next week to ask about a pump. I have purchased a Vibrerect device to try that as well.

User

Posted 02 Apr 2017 at 09:21

I have finally got an ED appointment, 3 months post op. I was told about the risks and what is available, I didn't know I had to wait 3 months though (despite my repeated requests)! I was given 5mg Cialis daily from TWOC and bought a cheap pump in the meantime. Cheapie ones really are just that - they work, but they're hard work. Time will tell how well this particular journey goes, but I'm optimistic.

User

Posted 02 Apr 2017 at 20:09

Thanks Lyneyre. I really appreciate hearing other people's stories. We remain optimistic but very angry about how the only thing the surgeons are interested in is getting rid of the cancer and after that you are left to your own devices! Of course if the cancer wasn't gone we would really have something to complain about so everything in perspective! However I feel this is a very important issue for our marriage... the disappointment/apprehension my OH feels when nothing happens puts him off being intimate and knowing he's just doing it for me makes me feel a bit guilty....not really a positive experience right now....though we did have 8 months of a mega rekindling before operation day...nice to remember!!

User

Posted 02 Apr 2017 at 20:11

With you there Tinky! Let us know how you get on!!

User

Posted 02 Apr 2017 at 20:11

With you there Tinky! Let us know how you get on!!

User

Posted 10 Apr 2017 at 13:29

Oh well, never got to ask for referral ED clinic or any of my other questions, his PSA has gone up 😟. Unfortunately we were both too shocked to properly take in what the consultant said, other than "you may need further treatment there has been a rise in PSA results". We are not sure wether it was to 0.8 or 0.08 from <0.05 three months ago. Either way, we see him again in three months but I will ring his secretary and ask for a copy of this result in the meantime. All other things go out of your mind don't they?!

Is there any other reason that post surgery PSA would rise?? Surgery was carried out 31/05/16 all PSA results since have been <0.05.

User

Posted 10 Apr 2017 at 15:57

If you are not seeing him for 3 months , the result was prob 0.08. They will want to see if there is another rise. Normally RT is the next treatment. Some hospitals wait till psa has risen to 0.2. Others give RT when there have been 3 successive rises. A rise from 0.05 to 0.08 could just be a machine error or calibration issue so try not to worry. Anything below 0.1 is really good.

User

Posted 10 Apr 2017 at 16:01

Hi Chris,
Thanks for that, I will ask his secretary to send a copy anyway but our thinking (hoping) was that it is "only" 0.08. Still worrying though as its not quite a year since his surgery. Fingers crossed for us all! X

User

Posted 10 Apr 2017 at 16:53

If there were very local micromets left on the prostate bed then a year is very normal to see this level of rise. However you would still be considered to be on a fully curative path with RT to mop up this very local recurrence. Sadly my post op psa was 1.5 and up to 2.4 within 12 weeks of surgery indicating something far more sinister afoot. Easier said than done , but thoroughly enjoy the next 3 months and worry after that

User

Posted 20 Apr 2017 at 13:55

Thank you for that Chris, we have just had another blood test arranged by GP so at least we will have another marker, results next week! We are trying to enjoy these three months as you suggested and will worry as and when needed.....at least that is the plan! X

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