Penis cancer

A place for people affected by penile cancer to support one another, ask questions, and share their experiences.

Glansectomy

Stumc
Posted by

Hi all

New to the forum but after some advice please.


I had a glansectomy 8 weeks ago and still not healing properly. 


Got a bit of swelling still and the odd bit of pain and still problems going to loo.


Is this normal or should it probably be better by now?

Thanks 

Stuart

Julie.c64
Posted by

Hi Stuart my husbands opp was 3and a half years ago and I remember him. Not been good with direction and doing plenty of washing for little accidents. I think 2weeks is a little early for complete healing he was on three monthly check ups but check it out with GP if you are worried about graft.

julie

Pkoneuk
Posted by

Hi Stuart

I went through the same thing, it wasn’t healing, still oozing and painful and turned out there was still some cancer remaining

I had to have another inch off

Every one is different though, might not be that

I’ve been through more ops since then with it spreading to lymph nodes and it’s back for the third time

Next Wednesday I’m having a full penectomy 

My worst fear, but there’s no other option for me if I want to survive 

My advice for anyone would be to join as many support groups you can, Facebook, Macmillan etc

Talking with people who have been through it can help 

Hope all goes well


Paul

patrick-p
Posted by

Hiya Paul, i had what was described as a subtotal penectomy in 2012 after glansectomy and partial penectomy failed to get sufficient clear margins.Apart from the usual pain and the obvious toilet problems, it really wasn't as bad as it sounds and i remain clear to this day as a result. It was only during the reconstruction stages that started in 2015 that my problems and complications really started.

"To the world you may just be one person - But to one person you may be the world"

Pkoneuk
Posted by

Hi Patrick, thanks for the reply. I’m trying to come to terms with never having sex again. 

I’ve already decided if reconstruction is only cosmetic, I.e I can’t orgasm, I won’t have it.

Out of interest how did you deal with the no sex thing, what problems had reconstruction meant and a personal one, how is your sex life.?

Sorry if that’s too much you don’t have to answer 

Cheers

Paul

Julie.c64
Posted by

My husband had glansectomy and a bit extra to make sure. He was a T2 and there wasn't any choice but has been very lucky not in lymph nodes but he has another condition which already affects them. He has had a condition called bowens in his fingers. He had nail removed from one thumb and tip of a finger still on waiting list for checking other hand which looks the same not sure if its related to penile cancer.the little blue pill for us but he says there's hardly any feelings there. He was left with aprrox 2.5" so he has struggled to come to terms with this but if you are in a relationship its going to affect both of you. I didn't think at 50 and 57 that would be the end of a full sex life.

Pkoneuk
Posted by

I haven’t really had a sex life for a year , I’ve always been recovering from ops.

I have about that size now but I was ok with that, not really ok with full penectomy but I have to accept it.

I’m 45 and my wife 40.

We have a son and don’t want any more, and she’s always had a really low sex drive that I used to hate but now am really glad of lol.

Thanks for getting in touch and sharing, it really helps knowing you’re not alone.

How are you coping with it Julie? 


patrick-p
Posted by

Hi Paul.

Not sure as in to how much you are having taken or what can be left for reconstruction but i was told by Nick Watkin at St Georges that in my case i had the very very minimum left that was required for future reconstruction. I too had thoughts like yours and it lead to my relationship failing. At that time i was at a very low point mentally and not just because of the cancer and relationship breakdown. 

I made it through and two years later i started a new relationship. I would have never coped or made it through the reconstruction stage without her. Sometimes twice weekly outpatient appointments at UCLH on the train from Cornwall and twice daily dressing changes which i wouldn't have been able to do if i was living alone, then had massive a complication and my left donar site that completely opened up which resulted in a 6 week stay in Derriford hospital whilst they tried to close it up, and i got MRSA in there too which slowed everything down. The final stages of the reconstruction with the implant were not without problems but i got there in the end. feel wise i gradually started getting more feeling in it as time went along. I'd be lying if i said it was no different than before, but it's much better than i ever believed would be possible and now i have very little regrets. I fathered my 2nd chiled in January this year when my son was born, something i never thought possible 5 years ago when i thought my life was over.

I've met some amazing people along the way and made a lot of friends through a support group where i use to live in Folkestone who really helped me in my early stages so never give up hope Paul.

"To the world you may just be one person - But to one person you may be the world"

Moderator - Macmillan

Wow!

That’s given me so much hope.

From what you are saying reconstruction is definitely an option now, although you’ve obviously had a really bad time of it.

Thanks for sharing mate.

Paul 

Julie.c64
Posted by

Its been 4yrs since full sex life guess its something you get used to we have been together 25yrs and overcome lots of things but I guess this is the worst its always in my mind what caused it was I a carrier of HPV virus no vaccines around when I was younger. My husband says I should find someone else (not going to happen) all the best to to you and your wife

Stumc
Posted by

Thanks for the replies, it does help to know that just because things are going so well at the moment doesn't mean that's how it will stay.

It has been hard not knowing what is going to happen and not being left with much after the op. I'm just waiting to find out a date for DSNB and then i'll deal with that and see what the future holds.

Thanks again everyone 

Kimbers34
Posted by

Hi Stuart. Ref the Glansectomy, I had a removal of the lower edge of the head, and about a fingers thickness (When aroused) all the way round the shaft under the head. That was my choice, the tumours were under the head but spread by the time I had the Op to the lower edge. I was told "The only way to be sure was to remove it totally" I didn't agree and sought a second opinion with a Specialist at the Norfolk and Norwich call Mr Sethia. He told me he was willing to do this partial but agreed the only way to be sure was a total Penectomy. I was 44 at the time, I have a very high sex drive and had a great sex life with my wife of 20 years. So I took the option offered. He did say, if he saw it was worse than thought he would remove it totally during the Op. I was lucky I guess.

Since the Op I get constant pain. I was told I would have moments of discomfort, but I get sharp pains "inside" my penis. Been back several times and its just internal scar tissue. It is quite common apparantly. I also had quite a bit of the external tissue removed and my skin was "Pulled up" and stitched directly to the head. When I get an erection the skin often splits and bleeds due to there just not being enough. 

So in reply to you original post, yes its normal to not heal after 8 weeks and pain is quite a common thing even after 5 years (for me). I do still have much of my penis so can have sex, but the pain after sex (due to split skin) has reduced my sex drive. You may find the same. No matter what, you are still here mate and thats got to be a bonus! . Good luck and hope it all heals well for you. 

Kimbers34
Posted by

Hi Julie

Mine was diagnosed as being caused by untreated HPV that I prob picked up in my "wild" youth. Living in the Canaries and the Far East, I was ..... erm.....free with my affections. It's not your fault in any way and I'm sure your husband feels the same. 

Myself and my wife have been together 25 years as well. We are still close but, like you say, the physical side takes second fiddle to the emotional side. Especially with the issues those of us on this particular forum, suffer from.

Julie.c64
Posted by

Thankyou for your lovely reply there are some nice people on here to chat with definitely helps to know were not alone.

Zodiac
Posted by

I'm not sure if that is normal. But is probably worth getting it checked. Why suffer unnecessary? When I had a glansectomy it seemed to heal quite quickly and without pain even though I got an infection when I knocked it and caused bleeding but it didn't last long as some antibiotics from my GP cleared it up.

However since then I've had a partial pendectomy (two weeks ago). From that it is sore and swollen - not massively painful but certainly a lot of discomfort. I'm due back at hospital in a week for a check up and results of lymph node removal which was done at the same time to check if the cancer has spread, although I think most of the pain and swelling is from the lymph surgery.

Z