Upcoming Operation - advice& what to expect

Hi jc54

I have replied to your other post on here, I had my operation in November 2022, approx 1 month after seeing my GP, so fairly quickly, the 1st operation was removing the tip of penis with the cancer, which sounds like you are having done, the only problem I had was the bed rest after because of skin graft, use to be active and then not allowed out of bed for 48 hours was a killer. But once up and about was soon discharged with very little pain, just bit of discomfort. Back week later to have bandages and catheter taken out. They also took biopsy of lymph nodes from each side, left side came back with cancer, right was clear, so second operation in February 2023 to remove nodes from left side,  unfortunaly for me my cancer returned in August, quite rare, which resulted in another operation to have full penectomy (total amputation) and right side nodes as was in them too by this stage. As said before if you need anyone to talk to message on here will try and check regularly. 

William 

Hi William, 

Many thanks for your reply. I suppose I was worried about pain mangement after the operation, but sounds like you had no issues and was up and about fairly quickly.

Regards

J

I had the surgery and lymph node removal September last year. The lymph node removal has caused me more lasting effects but I had my last scan in April which showed nothing concerning.

I think I've struggled more with the mental side of things as I know the physical side will continue to improve.

Any more specific questions feel free to ask.

Marc

What problems do you have.  I have two left and right they want to remove. But they said I would have leakage. Do you suffer with that?

I had 2 from my left side which has been ok, this was a precautionary biopsy and the actual incision to remove them was very small.

On my right side my central node was enlarged at around 4cm so they removed all 9. This meant quite a large incision up my groin area and having a drain fitted for 10 days after to remove the fluid. I suffered with infections after the operation and mobility with my leg. I am just about to start some physio to support with some ongoing pains.

Are your lymph nodes enlarged or are they doing it as a precaution? Like I said the left side hasn't caused me any issues so it might be a case you'll be fine.

Hi JC54, I had a Glandsectomy with skin graft Jan 2023 and precautionary nodes removed in March 2023 ( one right and 2 left) i was 63 at the time and I wont lie its scary, however you will come through it and most men will go back to almost a normal life, the success rate is very high.

I had a few complications mainly infections in my bladder and on the skin graft so watch out for these and they can progress very quickly, in my case i went to bed fine and woke up with a crater in my skin graft due to infection but it healed well after treatment.

I was allocated a specialist nurse which i used frequently these nurses are angels and was my link to the consultant which worked well.

You will have a catheter fitted after operation for a bout a week, I failed the TWOK twice (Trial With Out Catheter ) and discovered I have bladder retention, but hopefully you will be ok.

The penis has lots of blood in it so it heals well, you will get lots of pain in different areas but the pain level can be easily managed, my skin graft wounds  healed well but you have to accept you have had major surgery and give your self time to heal. My surgery was in the winter so i got a cage for the blankets so there was no pressure on my wounds.

Also i taped the catheter joints while sleeping as they can leak.

Support from loved ones is essential, talk about your issues with them, you will very quickly learn not to be embarrassed, i have family members now ask me how my penis is ?  

Robert

Hi Robert, 

Really appreciate you taking the time to respond and thank you for giving an overview of the recovery, its honestly really helpful for somone yet to go through this operation. 

I note the complications you had, anything that could have been done to help prevent them, particularly the infections on the skin graft?

Also you say that you had a catheter in for a week, I am surpised that the penis healed that quickly, but its encouraging that the catherter can be removed so soon.

Did you have any trouble with the catherter tubes getting tangled or pulling, I note you had to tape joints, why was that? 

I have been advised I would be hospital in for about 5 nights, is that your experience or is your stay adjusted to how you respond in recovery?

I am lucky in that I have support, and have been fairly open with most of my faily about the cancer, but not the detail of the operation so will endevour to speak more openly with them about what the operation entails. 

Many thanks 

J