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prostate operation

User
Posted 02 Jul 2018 at 09:49
Four weeks ago today I had my Retzius-sparing prostatectomy. The surgeon used a supra-pubic catheter which comes out of a hole just above the penis. That was removed after ten days and I was immediately continent. I have had a handful of leakages, but I bought just one box of 14 of the smallest Tena Light pads and there must still be four left, which will probably remain unused.

Six out of the seven keyhole wounds have healed well, three still have scabs on, but one became infected and I have just finished antibiotics which sorted it.

I only bled for two days into the bag after the op. but I was surprised during week three to start urinating both red and brown blood, and passing blood clots. I suppose that was my innards healing. No problems in that regard now.

My formerly magnificent penis, “The Ultimate Weapon”, seems to have gone into hibernation, and daily doses of Tadalafil 5mg have so far not tempted him to wake from his slumber! We live in hope!

Best wishes for your recovery Eddy.

Cheers, John

User
Posted 12 Jul 2018 at 15:38

Four weeks after my prostatectomy surgical stockings off at last and daily injections stopped, good news from the doctors they have agreed to repeat proscriptions for my sildenafil tablets. I am booked in for my first PSA test on the 6th August and see the consultant on 10th August for my results hopefully its good news. Incontinency seems to be improving but I still have major leakage when I am on my feet a lot and find it hard to control it seems to me that if my bladder is empty when I move around I leak but if I sit for a while and it fills up I don't leak as much anyone else had this problem. Life still goes on though I just spent 3 days at the lake district with my wife and a couple of friends and with very careful planning and a rucksack full of pads I managed to get around ok.

User
Posted 12 Jul 2018 at 16:48

All sounding as though things are improving and you are getting on with life which is great. When I got the position you are in now I used the Conveen sheaths with a leg bag for the longer walks so that I didn't need to change pads and it felt more comfortable. Also out is easy to open the drain tap behind a hedge as we have all done when caught out in the great outdoors. In the gents it was into a cubicle, foot on the toilet rim, open tap - job done.

The Conveen system helped me no end and because it was comfortable and less stressful my remaining stress incontinence improved dramatically.

Well done for not giving in to it.

All the best.

Kevan 

User
Posted 21 Jul 2018 at 09:23

five weeks since my operation and not as much as a twinge down below, I am taking my sildenafil tablets 50g every other day so hopefully I will get some response eventually, just wondering if anyone had or has the same problem and if things improved over time, the surgeon did tell me he might not be able to spare my nerves I will find this out at my 8 week check up so fingers crossed. my incontinency has much improved I am using 1-2 Tena 1 pads daily and walking 5 miles a day, last night was the first night I went to bed without a pad and did not leak at all even with two toilet visits. all in all I am very happy with my progress and hopefully I will make a full recovery with the water works. 

User
Posted 21 Jul 2018 at 13:38

So, I am seven weeks on Monday, post-op. Still have three out of seven keyhole wounds itchy with scabs on where the sutures didn’t dissolve. Antibiotics (three courses) seem to have done the trick.

Continence is fine, apart from the occasional dribble which my underpants absorb. Did I have that before? Probably.

No sign of life regarding ED, despite 5mg Cialis daily. Can still orgasm, albeit with reduced intensity, and no ejaculation. Weird feeling.

PSA @ 5 weeks? Undetectable.

Seeing the Professor for post-op conflab, 7 August. Have repeatedly asked for my post-op prostate biopsy results, which the hospital seems reluctant to provide, saying I must make a 230 mile round-trip to be told them face-to-face. The nurse kept telling me ‘pathology is short staffed and no results yet’, but then I found out from a secretary that the results were in, but she couldn’t tell me them. I have now made a Freedom of Information Request for my full records.

I am wondering what their reticence is about. I am a big boy now, and having had cancer and having had it removed, if there are positive margins on my excised prostate, I will deal with it.

I am more concerned to find out if the pathologist found 2” of penis amongst what was removed! 😂😂😂😂

Best wishes for your continued recovery.

Cheers, John

Edited by member 21 Jul 2018 at 13:50  | Reason: Not specified

User
Posted 21 Jul 2018 at 14:51
Hi John thanks for your reply sorry to hear your having problems getting information I find that very odd indeed. Glad to see your PSA is undetectable that's a good start to being cancer free.

I must say i find it very refreshing the amount of humour regarding what is a life changing operation for a lot of men including myself i think i might have lost about 2 inches as well but i had 9 inches to start with (haha) but if its not going to stand to attention any more its not going to be a problem.

Thanks for making me laugh John and i also hope your recovery goes well too.

cheers, Eddy

User
Posted 21 Jul 2018 at 16:16
John, FOI won't get you the results before your next oncologist meeting. You are experiencing the reluctance of secretarial staff to deal with clinical matters on the phone. Patient confidentiality etc. How do they know you are who you say you are? I think all hospitals are the same. Patience, my friend.

AC

User
Posted 21 Jul 2018 at 17:53

Originally Posted by: Online Community Member
John, FOI won't get you the results before your next oncologist meeting..........Patient confidentiality etc. How do they know you are who you say you are?

AC

Hi AC,

You have to provide your driving licence, bank statement and a utility bill as proofs of ID, and they have to furnish all records by law within 28 days. I did the same thing when I needed the info for my second opinion, but as that was private there was a £10 charge. This time it’s free. I have all my GP records on my iPad via the Emis Patient Access app, and an envelope full of paper records regarding my PCa adventure, including a DVD of my MRI scan.

The delay may be because the consultant who has to sign off the request is on leave. (In Jamaica or India doing private ops @ £19,950 a pop, maybe, as he is wont to do? Good luck to him!)

Cheers, John

User
Posted 21 Jul 2018 at 19:30

You have muddled up your legislation. You won’t get your pathology via an FOI request; you have to apply under the Data Protection Act 2018 if it is information about yourself. They have a month to give you it unless they decide to take 2 months or decline to provide it at all. They don’t have to give a reason. Can’t you just wait until the 7th when the surgeon can discuss it with you? 

Edited by member 21 Jul 2018 at 19:37  | Reason: Not specified

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

User
Posted 22 Jul 2018 at 03:08

Originally Posted by: Online Community Member

You have muddled up your legislation. You have to apply under the Data Protection Act 2018 if it is information about yourself.

Quite correct. My mistake. Applied ten days ago.

Originally Posted by: Online Community Member
Can’t you just wait until the 7th when the surgeon can discuss it with you? 

I had a follow-up appointment booked a couple of weeks ago, but when I got my PSA ‘undetectable’ result I wondered if I could have a video appointment with the Professor as he offers those in his private practice, so as to save a 230 mile round trip. It turned out that he was on leave and I would not be seeing him anyway. His understudy was adamant (by way of a flustered secretary new to urology who knew little of it) that I should attend in person, and declined to do a telephone or video consultation. Hence the new appointment with the Prof. in person on the 7th August. 

Positive margins or not? Forewarned is forearmed!

Edited by member 22 Jul 2018 at 04:53  | Reason: Not specified

User
Posted 10 Aug 2018 at 11:27

Had my appointment today 10/08/18 for my first blood test results and my biopsy on my removed prostate, me and my wife sat In front of the consultant waiting for the out come with fingers crossed and his first words were everything is fine you have the best results we could have hoped for all the cancer was confined in the prostate and no spread detected anywhere and my blood PSA came back clear, what a result. next appointment in November but what a fantastic start to the weekend.

User
Posted 10 Aug 2018 at 13:19

Good news Eddy, and best of luck for the future.

The pathologist found limited spread to my lymph nodes, which increases the chance of recurrence somewhat, but a second PSA this week was still undetectable. I told the Professor he owes me 2”. He looked puzzled. Either he or his sidekick Da Vinci must know what happened to it!

Cheers, John

Edited by member 10 Aug 2018 at 13:25  | Reason: Not specified

User
Posted 10 Aug 2018 at 14:36

Well done Eddy. Long may that continue

Fresh

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

User
Posted 12 Aug 2018 at 10:04
Well done Eddie, keep positive, and soon the squeaky bum time waiting as the dates of the 3 monthly PSA tests come ever nearer, will soon subside.
User
Posted 12 Aug 2018 at 12:21

HI Eddy

Great news. I am so very pleased for you both and as you say, it was a wonderful start to the weekend.  

Try not to worry about forthcoming PSA tests as there is nothing to be gained by it, just enjoy what you have and long may it continue. Is the incontinence improving?

Kind regards

Kevan 

User
Posted 12 Aug 2018 at 16:10

Thanks for your kind words and positivity Kevan.  The news we got on Friday was better than we could have expected given that every meeting we had with the consultant previously brought worse news than expected.  I am so grateful to the surgeon, and I don't underestimate the value of the help, support and advice I have received on this forum which has given me hope throughout the past 5 months.  As for the incontinence, I am improving each week and its not affecting my day to day life too much.  Thanks again and cheers Eddy 

User
Posted 21 Aug 2018 at 05:12

nearly 10 weeks since my operation recovering well doing plenty of walking and I've started training back at the gym, I have a 26 mile walk booked in on the 8th September along the roman wall so building up to that. my incontinence is improving by the day I am getting away with wearing a shield rather than a pad now and feel way more confident when i'm out and about, still no life down below would like a bit of feed back on how long others took to recover there erections (if at all) as I find it very frustrating that the urge is there but no action. all in all very happy with my progress and long may it continue.

User
Posted 21 Aug 2018 at 07:39
Well done on your recovery so far ! I hope you realise that a totally flaccid penis can have an orgasm through a well lubed hand or oral sex. Get that started ASAP to encourage blood. Have you got an ED clinic ? Pester them for a pump. You need to be using this almost on a daily basis for a long long time. Fills the penis and engorges it so keeping the tissue stretched and healthy. Use one of the bands for penetrative sex or just use it for exercise. Did you have nerve sparing ? Then ask GP for Viagra or Cialis. I suggest asking for daily low dose 5mg Cialis. Also you can ask for pellets , cream , actual injections into your penis. You can get there but don’t rush it — I’m over 3 yrs post op and I reckon normality started returning at the 2 yr mark.

Ask for a pump. Mine is a Somaerect Response 2 from imedicare and is available on the NHS or about £160.

If life gives you lemons , then make lemonade

User
Posted 21 Aug 2018 at 12:19

Hi there,
From reading your thread we started from a similar place although my Da Vinci op was done on 18th May. I am 64 in the last couple of weeks and quite fit and healthy.

My PSA reading 6 weeks post op was 0.1. That was ten times the pretest prediction by the surgeon but the reply was not to worry about it and test again in three months. ( I wait with bated breath)

On the incontinence front, I have no problem while seated or lying down and I can hold on for a few minutes once I stand. When up and about and active, a stand up pee is still very rare but I believe that there is slow progress on this front. Generally two or three Tena 3 pads a day if I have an active day. One will last all day if I sit at a desk. Either way I find the situation manageable.

On the ED front, orgasms are intense but difficult to achieve. Libido is fine but not the slightest sign of an erection. When I had the catheter removed I was given 8x20mg Cialis tablets and to be honest, not much instruction about what to do with them. google suggested that they were for use prior to an 'event' but - in any event, they make no difference.
Prior to the op, I was told thatI would be referred to an ED Clinic. Soon after my GP told me that due to my post code, that wouldn't e happening and he would refer me to the Urology Dept at the Hospital and that he would get an appointment by the end of July. When the letter arrived the appointment is for early October, so on the ED side of things, I do feel rather abandoned by the NHS. Having read some of the info on this forum, I am considering buying a pump and engaging in a bit of DIY therapy.
My wife has been a brilliant support to me and we have found a way to enjoy good sex despite my early feelings of inadequacy.

The entire PC experience has been quite surreal. I have never felt ill or experienced any symptoms prior to the cancer being found. My PSA had been the subject of 6 monthly checks for four years, creeping up from 6.5 to 10.4, before sending me for further tests & biopsy. Post biopsy, all 10 samples were cancerous. The Gleeson score was 7. I think that if I hadn't said that I thought that it was time to explore further, my GP would still be taking 6 monthly blood tests.

I have found it very hard to accept that there was something within me that was trying to kill me. Its just that all this crap has descended on my life and has to be dealth with and move on. I have never been ill, so its impossible to feel 'better'


In reading your thread, I have found many parralells with my own situation and found your comments quite reassuring. I wish you all the best and a speedy recovery.

regards
SK

Edited by member 22 Aug 2018 at 15:56  | Reason: spilling mistooks

User
Posted 21 Aug 2018 at 13:18
Hi SK,

What a shame that you had a raised PSA of 6.5 four years ago, which should have spurred your GP into arranging an immediate referral to Urology.

I am sorry that incontinence is still a problem, but so much of that is down to your surgeon and what they find there once they get inside. It will most likely improve with time.

I think it’s early days to think of erections, as the only time I have any sign of tumescence is when sitting on the bog! I did have nerve-sparing on one side, so we live in hope!

You should be able to get a pump on the NHS through your GP, or with your meeting with Urology in October.

I think my op was two weeks after yours, in June, and if I delve and poke round there, there is the slightest hint of discomfort, and I still have laparoscopic scars on my belly that have not yet healed, so I assume it’s the same internally.

I will not be copulating with a free NHS Dyson in the immediate future!

Cheers, John.

 
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