I had a blockage in 2013 and was told I needed an operation on my prostate to clear the blockage. I went to my GP who should have referred me after 4 weeks of treatment to get biopsies and it took 12 years because the type of tumour I had just grows in to the nerves and causes excruciating pain. There were signs and I paid for a private and the diagnosis was go lie on a sunbed and use Dermol 500 to wash the area as irritants are not good and it flares things up. Also it was diagnosed as overuse of antibiotics. There was never an infection. You would think that as the treatment did not work and the years went by someone would twig that the situation needed further more thorough investigation.
wrong I had changes to my Penis in 2017 and was concerned about penile cancer so saw a urologist consultant and diagnosed the lumps and lesions as Peyronies and Phimosis tight foreskin. The reason for this was a grade 3 Tumour growing inside me. I received a letter from the NHS Feedback service saying it was not Penile Cancer and it was nothing to be concerned about. I continued to suffer and complain and in 2023 a leading consultant did a Cystoscopy which he struggled to navigate the end of my Penis where the Tumour was growing by this time it was a big hard mass. I was about passing out with the pain and basically being called a baby and his reaction after causing me harm was. I can’t understand why you are in so much pain. It was a Tumour Hello. By this time I was told it was Somatic and all in my head. He put in his letter that no urological surgery would help with my complex pain.
by 2025 I had enough I called urology and spoke to a secretary I was somewhat distressed. I pleaded when will I get help with my pain why am I being left in so much pain. A very nice consultant had overheard my dramatic pleas for help and a letter arrived offering me an appointment to see him in a couple of weeks. The letter also said that enough time had been given to my investigation and it was unlikely that anything could be done to help.
By this time the Tumour was bursting through my anatomy causing an ulcer so when I saw the consultant. Shock horror. This is very serious and 2 weeks later biopsies and the other senior consultant said he had not seen anything like his is very serious. 2 weeks later I was diagnosed on a Monday SNB on Tuesday and an amputation on Wednesday.
all my pain disappeared my blockage disappeared my head hurts and I don’t know what to do I came within an inch of my life and by some miracle I have survived. I have another 18 months of checkups until my odds of the cancer coming back increase.
I have lost 12 years of my life that I won’t get back I don’t trust health professionals and I don’t know how to get closure.
N
Sorry to hear about what you have been through. I can empathise some as before Jancie was diagnosed she was getting sicker and sicker with a bad gynacological issue that ended up with her going in to toxic shock and being in a coma in intensive care for a week. After she recovered some she ended up making a formal complaint and while that was at least informative I cannot say it really brought closure.
After some time she was finally diagnosed with Leiomyosarcoma and tratment had it's ups and downs but in her case fortunatly the cancer has been rendered stable.
On the penis side myself I have Lichen sclerosus - eventually diagnosed after years of being told I had thrush so have had Phimosis ending up having a circumcision, also had frequent cases of epidiimus and was diagnosed with a benign enlarged prostrate. It does feel sometimes when I see people being encouraged to go to the GP that I can think - well I went.
Perhaps now my wife and I have managed to get to the point of living with cancer.
<<hugs>>
Steve
