Penis cancer

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

First time

Zodiac
Posted by

I've recently been diagnosed with penile cancer and I'm due to undergo surgery (glansectomy) tomorrow at St Georges Hospital in Tooting. Apparently it will be performed under local anesthesic and I'll just be in overnight. 

Obviously I'm concerned about coping back home as I live alone and what sort of pain I'll have to put up with (and for how long). Presumably I'll have a catheter (hopefully not forever). I had one some years ago for a couple of weeks and hated it - the inconvenience and fear of leakage at night flooding my bed.


The other thing that has depressed me is that I can't have reconstructive surgery as I suffer with psoriasis and apparently any skin taken from the thigh wouldn't heal. So I'm unsure about the extent of the 'loss'.


G.

Julie.c64
Posted by

My husband had glansectomy but didn't come out of hospital with catheter it was removed before he was allowed home.

Zodiac
Posted by

Thanks. I'm now back home and, yes, I didn't come home with a catheter. I spent the night in hospital and it was taken out before being discharged.

The down side is although the tumor was removed it was noted that I may have another complication with a secondary   issue/illness although confirmation of it and the extent of the cancer wont be known until the pathogy is carried out. I've an appointment on the 1st May for follow-up and hopefully learn of any results and next steps.

Z

Zodiac
Posted by

Ben, the chap I saw initially at St Georges was away on holiday so the op was carried out by top man Nick Watkins assisted by a specialist registrar. He even played Dark Side of the Moon on the theatre sound system for me during the op. 

Dispite having psoriasis he did also say he was amenable to reconstructive surgery later but I guess the all clear for cancer needs to be confirmed and any treatment necessary for the secondary issue undertaken first. No doubt I can discuss at my follow up appointment.

Currently I feel quite comfortable and relatively pain free, certainly better than pre-op as the tumor was starting to get painful. I am rather swollen and fragile down there but no worse than the cancer effect and I guess that will improve as things heal. And urinating doesn't seem to be at all painful (potentially would initially sting was mentioned to me).

Z

patrick-p
Posted by

That must be Ben Ayers. He was a registrar there in 2012 when i had 3 operations under Nick Watkin.

 

My stays in ST George's were anything but quick but nothing whatsoever at the fault of Nick and the team there. Think my first was 9 days followed by two 6 day stays but my tumour was very large and bleeding a lot as it was rubbished off as other bizarre things by my GP for 6 months previously.

I had a glans and nodes removed, followed by a sub total penectomy and then lymph glands. 

I was also told i may not be suitable for reconstruction due to me being right handed and my left arm being off limits due to surgery i had to a gun shot wound in my left wrist years ago, but Mr Christopher at UCLH was happy to use my right arm as a doner site if i consented and i had it done in January 2015.





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

Zodiac
Posted by

I don't think it was Ben (who I met at my initial clinic appointment) as he was away on holiday in Cornwall and the registrar was a young (rather attractive) lady. ;-)

I hope what sounds like extensive treatment for you has now proved successful. I read somewhere that penile cancer is so rare some GPs are not aware of it and not able to identify and spot it.

Z

Zodiac
Posted by

It's just over week since I got home after my glansectomy. I thought it was going well, not too much pain and able to get around, but today the wound has started leaking blood. Not profusely bleeding but drips and oozing. My concern is that it is rather mucky blood and I fear I may have an infection. Snag is it's difficult to see the problem and if there is any swelling and redness. I've phoned NHS 111 and I'm waiting for them to call back with some advise.

Z

Zodiac
Posted by

I got some antibiotics through my GP and the infection has cleared up. But on attending hospital for follow-up check was told I need a further two ops which will be done at the same time under general anesthesic - partial pendectomy and lymph node removal - as soon as it can be scheduled. I underwent pre-op assessment there and then (ECG, bloods, pressure, sugars,  MRSA, urine, etc.) And now I'm waiting for news of a date but not in the best frame of mind.

Z

Pkoneuk
Posted by

Hi Zodiac, I went through exactly the same thing mate.

They didn’t take enough off during the glansectomy so some cancer remained, I had oozing blood too and it was due to the cancer still being there so the skin graft couldn’t take.

Partial penectomy and 1 lymph node removed from both sides of the groin for biopsy.

That was July last year, skin graft took this time although I’d lost another inch but the biopsies were negative.

Things were getting back to normal until I found a lump in my groin in November 

January I went back in to remove nodes from both sides of the groin, 14 from left-7 were cancerous and 8 from right-2 were cancerous 

That was a nasty op, left me with no feeling in my groin or tops of my thighs 

I was told any more than 2 cancerous nodes and they must take the pelvic lymph nodes, which they did in February and they were all clear.

I’m back to work now but have been left with genital lymphadema, not nice and a right pain in the arse but I’m due for treatment for that.

It’s not a good time mate but it gets better, stay positive, stay strong, there is light at the end of the tunnel.

Zodiac
Posted by

That sounds sad but you do seem to be positive about it - something I could learn from.

Currently I'm in hospital having had a lot chopped way and several groin lymph nodes removed for analysis. I'm hoping to get home on Sunday.

Thanks for your words.

Z