Thanks David. And you're doing great! Wonderful to hear. I think I'll give FB a miss as I like to keep a low profile. Happy to post here though because penile cancer is so rare.

Hi David, 

i was wondering if you could share with me the symptoms you had when you first noticed something was wrong? My penis head feels quite numb and when the foreskin is pulled back i tend to see the area around back of the top go a dark blue colour. 

Any help would be greatly appreciated. 

HI. . My symptoms were a hardening of the gland and itching discharge and discomfort over several months .. then extreme pain and bleeding. If you have any concerns get it looked at just for piece of mind if nothing else..

Hi 

I hope you don't mind and please tell if you do . My brother is going through penile cancer . He has had several operations, the most recent a full penectomy . He has been given the devestating news that he has months not years . We have found as a family that he has been left to rot . He now has secondary skin cancer . 8 weeks ago they did a biopsy . They offered no topical treatment ( of which there is plenty ) having read up on case studies this kind of neglect is common place in rare cancers . A Doctor has stated that in rare cancers many treatments are over looked. What I am trying to say to you all is do your research and challenge doctors there are many pathways. Neglect is a strong word but that is what it feels like . 
 

I wish you all the best in your own personal journeys . 
 

David2 could you let me know about the Facebook group? Thanks for telling your story. Mine is just starting.

Hi William.  

Sorry to hear your at the start of your journey.  The fb group is private but you should find it by searching penile cancer awerness,  also Orchid cancer charity woukd have a link.   If I can help further just message me.  The group has great support and all stages and treatments are covered.  Orchid also have a info sheet on there website which is really good. All the best david 

Thanks David2. I'm in the facebook group now. I'd recommend it to others. You can learn a lot there and people are very helpful with tips and experiences.

Thats great news.. I am in the group but keep to the sidelines now - unless there is something specific i can help with. It really is a wonderful group and I am pleased you have found it.  all the best on your journey -