Cancer of the urethra

Hi,

Firsty I am sorry you find the yourself here. It is a scarey place. There are a number of guys , like myself , whom have been affected by cancer of the uretha or penis – I was diagnosed in 2014 with penile cancer and had positive node spread. So in answer to your question , yes I have and you are not alone. How do you get your head round it – you just do, you have no choice and to be honest what we can as human being cope with is far greater than what we think we can. Yes it is off the scale but it can be overcome.
Where are you being looked after?
Happy to support and answer questions that you may have .

Hi, thanks for taking the time to reply, I appreciate it. Yes, it is a scary place. I was under Chesterfield Royal but I have now been referred to Leeds St James. I was originally misdiagnosed with lymphoma and now the consultant at Leeds is concerned that the delay in referral may have given time for the cancer to spread to other lymph nodes bearing in mind my groin lymph nodes are growing at a fast rate, from a relatively small lump in July to a very large one now. So yesterday I got a double whammy, firstly that i would lose my penis, secondly that it may be too late to operate anyway and that the cancer would be terminal. I will know in 2 weeks time following another CT scan and MRI. I think I can come to terms with losing my penis but at the moment the thought that it could be terminal is over riding everything else. 

It's no comfort but a lot of us are misdiagnosed. I had an " infection" despite my groin nodes being the size of a walnut. 

The surgeons whom specialise in penile / uretha cancer can do some amazing stuff , albeit not for the faint hearted. The UK is leading the world in this condition so try to take some comfort . Until the scans are reviewed it's anyone's guess but you are currently in the trauma of the unknown. 

I was node positive in the groin and pelvis as have others and with the treatments we had we are still here. 

Not going to lie , it's an off the scale journey you are on but please keep in your mind others have done this. 

If you wish to pm me I can put you in touch with others guys. 

Thanks again for responding, it is some comfort to know I'm not the only who is going through this, or indeed, has gone through it and come out the other side. The trauma of the unknown sums up my feelings perfectly. The day I get my results can't come soon enough. Until then, I'm just going to get through it day by day. I will take up your offer to put me in touch with other guys when my emotions have settled down a bit.

Indeed. Reach out when your ready , it's a big step no rush it's a lot to take in and deal with. 

In the meantime any questions or assistance I can offer just ask. 

I had a full penectomy following diagnoses in 2014 aged 46 with further ops for groin and pelvis nodes removal. Then followed chemo and radiotherapy with treatments taking about 6 months in total. In may this year I was discharged by the guys at St George's in London.  Lots happened over the five months but here i am with no evidence of disease. 

David