Penile cancer

Dear@ballylopin, I noticed you hadn’t had a reply to your post and it seems that the traffic in this part of the forum is quite slow, so I wanted to lend you some moral support to keep you going until you get a reply from someone with personal experience. It sounds as though you have a had some major surgery and you are suffering considerably with pain. Have you been offered OxyContin, it’s comes in various dosages and two different formats. Slow release 12 hour pills and in liquid form for breakthrough pain on top of that. I find if you get the dose right it’s very effective, but you have to experiment a bit. I’ve taken it on many occasions and did not find it habit forming as it only seems to work if the pain is actually there. I am sure it’s going to take a while to adjust after a life changing operation, but if you get the right kind of support I believe you can work your way through the most problems. I have found the support of my friends here in the forum invaluable when I’ve been down about things, ultimately it doesn’t matter the kind of cancer you have we all face similar challenges and I would encourage to join the chat part of the forum as well as this one, so you can raise any concerns you have about your cancer in general, and get some emotional support .

Sorry you find yourself here ballylopin. I absolutely agree with Jane, we may not all have the same cancers but I'm sure we have all had the same fears, worries and dark thoughts. I'm still new to all this cancer business and all the emotions it brings with it. I too have found the support from here just, amazing really. Keep talking to people around you, your gp, cancer nurse and your friends here. Everyone here will support you. Take care and stay strong. X

Probably a bit late in replying, but . . . 

I originally had the tip removed (glansectomy?) carried out under local anethetic but there wasn't sufficient clear margin so I faced having the majority removed and a lymph node removal/biopsy both undertaken as one procedure under general. I found the most pain was the multiple radioactive compound injections to track and identify which lymph node is the first your body drains to that they need to remove/check. But those injections are only a one-off thing. 

I recovered relatively quickly from the operation with no pain (just a little to be expected discomfort and soreness) although later I got a large lump/infection in my groin that meant a longer stay (than the op) in a different hospital. 

If you are still in a lot of pain you probably need to seek medical advise (hopefully you have) and have had treatment/pain relief. 

G.

Ballylopin

Back in 2012 I had a large T3 tumour halfway down. It went undiagnosed for so long as my useless GP kept rubbishing it off as other things and even had the nerve to send me to a STD clinic not once but twice, even though there was absolutely no chance of that. In the end I got fed up with the constant bleeding and pain that it had come too and went to Folkestone hospitals walk in centre and the urology registrar suspected it immediately. Three big operations later at Canterbury and then St George's at Tooting under Nick Watkin I ended up with a sub total penectomy and was left with bear minimum left ( I was 32 at the time) 

Don't lose hope. Spent the next year with radiotherapy and lots of followup but alas no more surgery. Eventually got cleared in autumn 2014 and underwent the phalloplasty reconstruction in January 2015. I had a major complication with one of the doner site wounds which opened up but I'm told that is extremely rare. 

With the phalloplasty I've gone on to naturally have two children with my partner. Know it's never going to be entirely the same thing as a natural anatomy but it's way better than I ever envisaged.

I felt exactly like you did after the dub total, so never lose hope.