Penis cancer

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

my husband has just been diagnosed

sarah1992
Posted by

hi, my husband has just been diagnosed with penile cancer at the age of just 26 and has had a circumcision plus removal of the lump on the head of his penis, the biopsy confirmed cancer at end of stage 1 beginning of stage 2 we are now waiting for a appointment at st georges hospital to check if it has spread to the lymph notes. I'm looking for advice, experience, someone to talk to anything really as trying to stay strong for my husband but dreading what's to coming as this is a rare cancer it s really hard to find support and information. there was  cancer cells around the edge of the removed lump does this mean he will need further surgery as they have not got it all? i have so many questions now after intial shock and can't speak to anyone untill we get the appointment for st georges. any abide on what to expect,ask very welcome. sarah. x

Jess - Macmillan
Posted by

Hi Sarah,

I've made this into your own post as the other one was a few months old now. I'm sure someone will be along to reply to you soon.

Best wishes,

Jess

Macmillan Community Team

Dave 46
Posted by

Hi Sarah. . Really sorry to hear your news it's a difficult time.. but you are not alone.. I have sent a request to you. 

I too am under st George's as are a number of other guys. We can support you both ... do get in touch.. 


David 

Pkoneuk
Posted by

Hi Sarah, wow 26 is so young. I was 44 when I was diagnosed last April and had exactly what your husband has just had.

The next step for me, and I’d imagine your husband, will be a glansectomy. Remove the ‘bellend’.

There has to be a positive margin from the cancer cells.

I found it wasn’t too painful but had complications with blood vessels bursting from the wound. 

Other than that healing time isn’t bad and if it hasn’t spread to the lymph nodes that might very well be it.

For me this is the 3rd time it has returned after spreading to the groin and on Wednesday I’m having a full penectomy.

You’re not alone, you or your husband.

My wife has been my rock through it all, I couldn’t have done it without her.

My advice is join support groups like this, it’s good to talk to people who have been through it.

Ask me anything and if I can help I will.

Good luck with everything.

sallypat
Posted by

Hi Sarah

How dreadfully worrying for you both. My son was diagnosed with the the disease aged 21 yrs and sadly passed August 2016. Please look at all my posts they may be of help but he was at stage 4 at diagnosis so you are both already ahead of the game. 

My son was treated at UCLH but I’m guessing treatment is similar wherever and St. George’s has a very good reputation. 

Please feel free to message me if I can be of any help survivors are out there but difficult to find

Kimbers34
Posted by

Hi Sarah

That is young! I may be the different one here as many with Penile Cancer have had Glansectomy's or Penectomy's. I was diagnosed stage 1 and had spread from under the foreskin to the edge of the head, so early stage 2, by the time I had the operation.

Initially my specialist (Norfolk and Norwich Hospital) said that I had to have a full penectomy. Being 44 and having a great relationship with my wife, I really wanted to explore other chances, so asked for a second opinion. I was very lucky in that Mr Sethia of the N&N is a known expert in penile Cancer and he offered me a second option.

I had a full circumcision like your hubby, but they then took around a fingers worth of "muscle" away under that. They then removed the lower edge of the head, but left the rest. The removal of the effected area's was done with a "margin of error" to ensure everything was gone. What little skin was left was then pulled up and stitched directly to the head. It's not pretty (Frankenweiner my wife calls it) but it works. The only thing was that Mr Sethia did state that if they found further evidence during the operation, they may have to take the whole head. They didn't.

The only previso to this operation was that "The only way to be 100% sure its gone is to remove the penis". I was willing to accept that at my age and relationship. 

You should know if this was offered to you, it does cause some scar tissue internally, I do sometimes get discomfort, especially as there isn't enough skin left which means it cracks and can bleed during sex. 

I hope that gives you some hope and truly hope you and your husband get a positive diagnosis.