Almost three years ago I was diagnosed with penile cancer, within weeks I had a 50% of my penis removed. A year later I had to have a second operation to remove some scar tissue that was affecting the way I had a wee..
When people found out I had cancer, a normal questions were “what type?” Or “where?”. To start with I was embarrassed almost ashamed to say where. About six months after my second operation, I decided to do a half marathon to raise money, to give something back to cancer charities. On my just giving page. I announced to the world that I had penis cancer and what I then consider a life changing operation. The sense of relief was fantastic. Friends and workmate were supportive and curious, asking every possible question.. all of which I answered.
Since then I have had my ups and downs (more downs) as I came to terms with my new body. About a 18 months ago I confided in my consultant that I was still struggling with anxiety related to the surgery. This was affecting many aspects of my life, both personal and my career. He recommended that I talk to a therapist to see if this could make any difference.
Since then I have undertaken 2 bouts of therapy. The latest bout identified that I was suffering from Post traumatic stress. 3 months later my therapy has finished and I’m feeling so much better.
So my advice for anyone unlucky enough to be on or starting this journey is, if you are struggling to come to terms with what is/has happened to you..speak out, tell your doctor or speak to your McMillan centre (it’s only fair to say that other charities and support groups exist to support men’s health issues)
Talking my issues through and coming to terms has made a massive positive difference to me, I’m not unique.,.. so it might help you to.
Lastly, if you are just starting this journey and looking for help and advice, talk to your doctor, the nurses or a men’s health charity, ask any question.,.. there is no such thing as a stupid question..
Glad you seemed to have found some peace in your journey, I still find it amazing that therapy / councelling is not automatically provided for penile cancer. I found it so difficult to be taken seriously when I tried. Got there eventually and to be honest my therapist may have saved my life. As with you I still struggle, but it's learning to adjust and accept. All the best.
I’ve been searching for others in the same boat for a while.... had a diagnosis in Dec 2018 followed by sub total surgery in Jan. 2019.
I too, can’t believe that there doesn’t appear to be the same level of support out there for men.... or is that just my perception.
What with lockdown etc. And the apparent rarity of this type of cancer it’s been difficult. Glad I’ve finally found this forum.
I have had Penile Cancer and have had a total removel of everything down below. I Agree there is not much info etc out there but I am a Volunteer with MacMillan cancer support and we do have a telephone buddy service to access this please contact our help line you would be matched to someone like myself, whom is not a proffessional medic but can help by calling you once a week for example and having a chat, we can also sign post you for further help if required.
I do wish you the very best for the future and just keep as well as can be, we are all here to suport you all
I have been on a similar journey on about the same time frame, recovered if you ever do from cancer, still treating my self with DIY chemo, my wife got diagnosed last year and required a massive operation, treatment sorted and hair coming back, I have just been dismissed from my work place after 24 years, with no support through covid while shielding and agile working.
Now going through appeal stages around job and then hopefully down a constructive dismissal tribunal, we have our health but how do you manage the stress of living with cancer with limit support and now no wages ?