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User

Posted 21 Aug 2018 at 15:00

Stukno

6 weeks is a bit early to be worrying about dribbles and hardons. Took 2 years for dribbles to stop and usable function to return for me. Keep doing the kegels and get yourself a pump. If you are getting off with the missus without a stiffie you are half way there already!

Your 3 month PSA will be important if it's detectable make sure you get a refferal to an oncologist for a second opinion.

Edited by member 21 Aug 2018 at 15:01 | Reason: Not specified

User

Posted 21 Aug 2018 at 16:15

Apologies to Eddie that his thread is being hijacked but Stukno, was your post op PSA 0.1 or less than 0.1? Have you seen the result written down and have you checked that whoever read your result didn't miss the < sign? That has happened to John a couple of times and the receptionist said that she hadn't understood what the symbol meant.

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

User

Posted 21 Aug 2018 at 19:36

Don't worry about my thread being hijacked its good to see people talking about there problems all these conversations help people to cope with there situation When I said my blood test was clear I should have said undetectable.

Edited by member 21 Aug 2018 at 19:43 | Reason: Not specified

User

Posted 21 Aug 2018 at 21:30

Hello Eddy, I also apologise for crashing your thread with my own experiences. However - if you will forgive me:-

My 6 week post op PSA is 0.1 The test was repeated twice because it was thought that my sample had not been put through the right test to detect super low PSA results and eventually they decided that it was indeed 0.1 and not less than 0.1.

Perhaps my only other comment of sharing is that pre-op, I decided that I was not going to comb the web in search of potentially misleading information and I confess that my early explorations of this forum were pretty frightening. I would say to anyone following who might read this that I took a wrong decision on this as throughout my contact with the various Consultants, Drs and nursing staff there has been an assumption that I, as patient will have a certain level on knowledge and things haven't been explained. I've had to find out about Gleeson Scores, 'T' ratings for cancers and many other things. Immediately post op, I was offered a laxative and in my innocence, I replied that I hadn't eaten for 24 hours and thought that it was probably not needed. With a shrug, the nurse moved on and only later did I find what I had let myself in for. In the event no harm was done but I could have damaged myself internally.

I notice that one person commenting on here say that they know more about ED than their ED nurse. With hindsight, I would say that that's the way to go with all matters, in order to look after yourself. - Hence my previous comment about the DIY therapy. Physician - heal thyself! I wouldn't go down the route of buying drugs off the net but I do intend to look into vacuum pumps and if I am not happy with the response and advice that I am offered at the Urology Clinic at my local hospital I will look into paying to see a specialist.

Eddy, if you are down to a single lightweight incontinence pad, then you are definitely ahead of me although, as reported in my previous post, If I have a steady day, mainly seated, I could claim to have recovered from incontinence completely. A day in the garden and I have made no progress whatsoever.

Enjoy the long walk.

regards,

stu k

User

Posted 21 Aug 2018 at 22:54

Stukno (and anyone else under the age of 60) - have you been informed to get your prescription exepmtion certificate signed by your GP and sent off? Anyone diagnosed with cancer or suffering side effects of cancer treatment is entitled to free prescriptions - the certificate has to be renewed every 5 years but since very few men have completely moved on in 5 years, that isn't usually a problem.

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

User

Posted 22 Aug 2018 at 14:33

Hi LynEyre

Just received my report from the Freemans Hospital and it reads-radical prostatectomy and bilateral pelvic lymph node dissection June 2018 Gleason 3 + 4 = 7 adenocarcinoma of the prostate, organ confined, negative margins and negative Lymph nodes (pT2cN0.

Also two PSA blood tests a week apart were undetectable.

Fingers crossed next appointment Friday 9th November 2018.

User

Posted 22 Aug 2018 at 16:11

Sounds as good as it gets! That might have been me if I’d had a PSA test during my seven-year gap between them.

Keep calm and carry on.

Cheers, John.

User

Posted 22 Aug 2018 at 19:31

Brilliant news Eddie - have a pint of something to celebrate :-)

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

User

Posted 23 Aug 2018 at 09:34

Good results Eddy, I'd be happy with those.

regards,

stu k

User

Posted 10 Sep 2018 at 03:38

Three months since my operation and recovering well, the incontinence is improving all the time I still need to wear a pad (tena 2) to catch the odd dribble but hopefully this will stop. The impotence is still a big issue not a lot of action at all down below I live in hope that some day it will fire up again. Energy levels have been fine back at the gym and doing loads of walking just completed a 24 mile walk, struggled the last few but apart from sore legs and feet I feel fine,

User

Posted 10 Sep 2018 at 13:53

Well done Eddy. I’m at the same level at the 3 month mark. You should switch to Tena 1’s they are the same size but are more than adequate for the issues you describe. I thought I could jump to Tena shields but they are just small and dont give the coverage needed. The Tena 1s are a great improvement over the 2‘s

Fresh

Edited by member 10 Sep 2018 at 14:05 | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User

Posted 10 Sep 2018 at 14:11

Hi Fresh thanks for the advice just have a few packets of size 2 to use up then I will try them.

User

Posted 11 Sep 2018 at 15:06

All pretty positive there Eddy.

My Da Vinci op was in early June. I still have incontinence issues but there has been a significant improvement in the last couple of weeks, I probably have a pelvic floor like a steel hawser, One pad a day and the amount of leakage is entirely dependant on how active I am so mainly stress incontinence.

In general terms I feel 100%, fit and healthy.

As far as sexual ability, I have no ability to raise an erection. I have seen my own doc and been prescribed 5mg Cialis daily but my 'appointment in three or four weeks at an Erectile Disfunction Clinic' has morphed into an appointment at the local hospital Urology Department in mid October. I can orgasm, not easily, but when it arrives it does blow my socks off, more intense than ever before. Yay! :-) Between us we have worked out a way to enjoy good sex which has been helpful on many levels. It seems that regaining an erection isn't easy for anyone and it will be a slow process but I don't give up on the idea yet.

If it means that I have seen the back of cancer I'm very happy with how things are.

I hope that its working for you too.

regards

stu k

User

Posted 11 Sep 2018 at 15:44

Hi Stukno

sounds like your doing well my op was 14th June and my incontinence all of a sudden improved dramatically about the 9 weeks mark I am coming up to 12 weeks since my op and I am pretty dry most of the time, like you I leak a little when I am under pressure but generally I have good control. keep the pelvic floor exercises up I do think they help and also try to let your bladder fill up as much as possible I was told at the incontinence clinic this helps the bladder get back to normal. I am also living in hope that my sex life gets back to normal but as you say having the cancer removed is the main object.

You sound a pretty positive person I certainly think it helps your recovery if you have a good outlook on life and not to let it get you down.

Cheers Stukno.

Edited by member 11 Sep 2018 at 15:52 | Reason: Not specified

User

Posted 16 Oct 2018 at 05:52

It has been four months since my operation, I still need a small pad (I have moved onto tena 1 shields) for the incontinence for the odd dribble but all in all not to bad. My sex life is still a thing of the past I can get a semi erection but it takes a lot of effort, I find it very frustrating that the automatic function of getting aroused just does not work at all, I am told its early days but when I read up on it,the outcome is not very promising. I would be very interested to know how many of us actually return to a normal sex life. I have my next PSA test in November and even though my first results were excellent you start to get a bit nervous when the time comes around again.

User

Posted 16 Oct 2018 at 09:29

According to QOL data about 90% of men that had full nerve sparing can get an erection 12 months post op, either on their own or using tablets, injections, pellets or a vacuum pump. The QOL questionnaire does not ask whether the erection is sufficient for penetrative sex.

General advice is that natural erections should return within 2 years otherwise it won’t happen at all. Not strictly true as in our house it was 3 years post-op but John does have natural erectile function now. Much depends on keeping the penis healthy in the meantime - are you using a pump regularly (daily) to prevent atrophy?

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

User

Posted 16 Oct 2018 at 10:09

Click my picture and read my profile re sex life. Also look at the ‘erecting the erection’ thread which is good. Lyns advice is spot on. Very early days for you and keep it healthy each day using a pump. Find the time as it will pay off later. Guide your own recovery. Badger your hospital for ED clinic or your GP for meds. Try everything— pellets , tablets , creams , injections etc. I had partial nerve spare and realistically it took me 2 yrs to get spontaneous rigid natural erections again using daily Cialis. And I truly believe there are improvements monthly still , now 3 1/2 yrs post op. Don’t give up ok

If life gives you lemons , then make lemonade

User

Posted 16 Oct 2018 at 19:06

Hi Eddy,

I had my op at a similar time. As you suggested I too found a sudden improvement in incontinence and now, 5 months on apart from stress incontinence when doing heavy lifting, I'm pretty much over all of that.

On the ED front, a different story, I've only just in the last week (12/10) got into the local hospital Urology dept (in my post code I cannot be referred to the specialist clinic) I wasn't very impressed. They have prescribed capsules and made an appointment in November to be 'trained' for a pump. It was all a bit dismissive though. Soon after the op - having absorbed the info on here and having been told that I wouldn't get an ED appointment until mid October, I went to my GP and requested daily 5mg Cialis which he prescribed no problem.

On Monday 15/10 I saw the surgeon and too the opportunity to discuss ED. He reckoned that the capsules would do no good at all and injections were the best bet.

I have therefore decided to pay for an appointment at the specialist clinic in the hope of getting the best advice - and then twist the arm of the NHS when I go back there to get what I want.

Without going into too much gory detail, I find that I can orgasm really strongly but its difficult to get there when there's not much to work with. Even a partial erection would be a help.

I also got the news that my PSA levels, which were at 0.1 at 6 weeks post op were now 0.2 and therefore some further treatment radiotherapy will be needed - which is a bit of a bugaa…. but there it is. There should be a thread started by me asking for advice on what to expect in this situation.

In all other respects, I feel good, I just hope that the radiotherapy / whatever does change that.

regards

stu k

User

Posted 16 Oct 2018 at 19:46

Hi Stu

sorry to here your PSA levels have move a bit and you need further treatment, as you say a bit of a bugga but hopefully the radiotherapy will finish it off for good. As for the ED clinic do you have to go back to your GP to get a appointment there or speak to the urology dept at my next visit in November, they did mention a pump to me on my last visit but gave no indication how i get one i just presumed they would sought it all out for me, but reading your thread it seems that is not the case.

best of luck with your further treatment.

regards

Eddy

User

Posted 30 Oct 2018 at 13:37

Over the past 6 weeks I have been having problems with my left leg swelling up, I went to see the doctor and she said I had Lymphedema and it was a side effect from my operation, I casually replied the op had left me with a few problems her reply was it's better than dying of Prostate cancer I agreed 100% and went on my way with a smile. Anyway I am wondering how many of you out there have the same issue and if it was short term.

cheers

Eddy

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