Just over Surgery: I had an open... - Prostate Cancer A...

Prostate Cancer And Gay Men

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Just over Surgery

Bcgkelly profile image
15 Replies

I had an open prostatectomy last week and also all lymph nodes were removed as the cancer had spread to one of them at least. Getting the catheter out tomorrow and I’m glad as it’s driving me nuts. I have yet to get a full report from the operation but was advised that the nerves had to be removed and in time am hoping I can get some advice from this group.

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Bcgkelly profile image
Bcgkelly
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15 Replies
billhoadley profile image
billhoadley

For starters, congrats for taking the major step to rid yourself of the cancer. Now come the important part of recovery and finding out just how different the surgery has left you from your previous self. If disappointments mount, and that's possible, always keep in mine the reason you moved ahead on this - to get the cancer under control.

Yes, catheters will drive you crazy and by now you're likely free of it. In a few days you'll start to feel more human, less drugged out and more in control of your life. Here's hoping you will find you are not incontinent or impotent. Check things out and if you have issues, get on top of them quickest. Easy to say, hard to do, but persistence will pay off.

For now, just take your recovery as it comes. Ask for help and don't turn down offers of same. Keep posting - we're all rooting for you. And we've all been thru it.

Be of good cheer, Bill

Bcgkelly profile image
Bcgkelly in reply to billhoadley

Thanks for the reply. So far not incontinent. Fingers crossed for the rest.

koiboi profile image
koiboi

I agree with Bill, just realize you're life has changed and deal with accordingly. My life started over 7 years ago and is still evolving. Remember.. you r alive and cancer free.

Bcgkelly profile image
Bcgkelly in reply to koiboi

Thanks, reading through the posts in this group has helped me to realise what I’m really dealing with. My cancer was 8 on the Gleason score pre operation. I’m not having issues with incontinence since the catheter came out and have been dry so I guess that’s positive. Hopefully I can deal with the balance. I definitely intend to get a pump and the hospital can put me in touch with a medical rep that sells them. If things go right I might get some time before needing more treatment.

Paulo1968 profile image
Paulo1968 in reply to Bcgkelly

It is wonderful you have been dry since catheter removal. You must be very happy with it. For me it has been the worst part to cope with since surgery, even though feeling improvements now after almost 2 months of the surgery.

Wish you continuing good recovery.

Bcgkelly profile image
Bcgkelly

Thank you, just over two weeks since surgery and I’m very sore with lots of pressure. Finding it hard to get anything comfortable to wear. Everyone telling me I’m doing well and that it was major surgery but it’s very frustrating .

cfrees1 profile image
cfrees1

I was in your boat about 2 1/2 years ago. Losing the nerve bundles means permanent ED for me. The injections didn't even work. But since I'm on ADT permanently, the loss of desires means that I can more readily accept the lost of erections. On the whole, I'm happy with my recovery so far. I know this is just the beginning of the battle and life is forever changed, but I try to focus on the positive.

Bcgkelly profile image
Bcgkelly in reply to cfrees1

You are very right, I am also trying to focus on the positive. I’m delighted I don’t have a major problem with incontinence although things are far from normal down there and my balls appear to be swollen & I had some pain/discomfort in the right one today. I’m alive and have a chance to fight this horrible disease. This group is helping me to put it into proper perspective.

Paulo1968 profile image
Paulo1968 in reply to Bcgkelly

Hi, I also had my balls swollen for a few days and small pain in one or the other ball. It will go away... I found that ice in that area helped. Don’t use the ice directly but rather use a towel.

Bcgkelly profile image
Bcgkelly in reply to Paulo1968

Thanks, I got worried yesterday evening as it seemed so strange and I wasn’t aware it could happen.

Terp2017 profile image
Terp2017

Wishing you great success in your recovery. We all different and have different levels of outcome. Success is to be measured in life and enjoyment. Somethings are downers, I still dribble some. If that is the worst I have remind myself it is a small price.

Be kind to yourself, allow yourself time, and never feel like you are alone.

Terp2017 profile image
Terp2017

Hope you are feeling better. The catheter was the worst feeling. My doctor had me remove mine at home by myself. I thought I was going to die thinking about it but it was easy.

Did you get advised to do anything else?

How are you doing mentally?

Bcgkelly profile image
Bcgkelly in reply to Terp2017

Things took a turn for the worse after that post. I developed two infected pools of lymphatic fluid one of which was leaning on the main vain coming from my right leg. GP took immediate action and sent me to the emergency room of the local hospital. While there I developed clots and ended up with PE in both lungs. Was transferred to a bigger hospital and was there for 15 days on IV antibiotics. They also put in two drains to remove the fluid. Once I got out things started to improve again. The incontinence is improving and I’m down to one light pad a day most days. The most significant thing I’m suffering from now is fatigue. It can be bad some days. Trying to do some exercise in the gym to combat it. Problems with ED as my nerves had to be taken because the cancer was outside the prostate so I’m going to hospital on Thursday to be shown how to give an injection into my penis which will hopefully give me back some hard on’s. I am also on a blood thinning injections for six months which is making me very bloated.

To be honest I’m very traumatised by the whole experience and have been getting counselling which is helping. The positive is that the margins from the operation were cancer free and the first PSA test was below the accepted level. Next test is in mid November and hopefully it will also be low. The idea of both hormone and radium treatment frightens me and I’m hoping I don’t need either for quite some time. Only time will tell. Thanks for asking and how are you?

Terp2017 profile image
Terp2017 in reply to Bcgkelly

Damn, I am sorry to hear about all the complications. That has to have been extremely discouraging.

I am padless most of the time, but when I am tired or have alcohol or bend in the wrong way I leak. Just part of the new normal. Get my down times but usually they don't last to long.

I am happy to hear you are progressing. Do you have someone walking with you through it all?

I hope the injections workout for you.

I can have orgasms but I have to do it to make them work, lol.

Bcgkelly profile image
Bcgkelly in reply to Terp2017

I’m glad you are padless I’m heading in that direction. Like you when the tiredness hits I still leak. My recovery is long slow and frustrating particularly because of the complications but I am surrounded by family and friends that have given me powerful support and am going in the right direction. If I could get rid of the fatigue things wouldn’t be too bad.

Keeping the head up but it is hard work sometimes.

I can orgasm but without a hard on it’s not the same. Hopefully things will work out well on Thursday. I believe it works for over 90% of men.

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