12 April 2019, Tim Burton -
We have hospitals across the country with urology departments that are offering state of the art treatment for various conditions in the world. These are delivered by highly skilled surgeons and expert nursing teams. However, sometimes there are cases that require unique expertise both in terms of decision making and technical expertise.
Alex has neurofibromatosis, which is a genetic disorder that causes non-cancerous tumours to form on nerve tissue. Perhaps the most famous member of the neurofibromatosis community is actor, Adam Pearson, whose tumours appear across his face. Alex’s tumours are internal and they have wrought havoc with his bladder.
In 2012, Alex was a student in Leeds. That summer he found himself in and out of hospital with a series of bad urinary tract infections (UTIs). Before long, Alex had stopped peeing altogether as bladder lost the ability to squeeze the urine through normally.
“For 7 years I stopped going to the toilet naturally; instead of standing over a toilet to pee, I had to insert a catheter 5 times a day just to release urine from my bladder.
“That was always pretty tough because you’d have to carry several tubes with you every day and go and find a cubicle in which you could perform the self-catheterisation.”
The combination of neurofibromatosis and not being able to pee made Alex a unique case. But then it got even more complicated when, in December 2017, Alex was diagnosed with a condition called keratinising squamous metaplasia. Alex’s urologist and TUF surgical trainer, Professor Muhammad Shamim Khan explains,
“Keratinising squamous metaplasia is a rare disease that changes the normal lining of the bladder to the one which covers the skin. It’s what we call a pre-malignant disease, meaning that there is a good chance that 30-50% of patients will subsequently develop cancer with extensive change in the bladder. There is no curative treatment for this condition and when extensive needs removal of the whole bladder and if appropriate replacing it with the substitute reservoir constructed of the patient’s own bowel. This is also known l as a neo-bladder, which means creating a new bladder using patient’s bowel.”
Once Alex had been explained that there was a high risk that he would develop bladder cancer, he decided that it wasn’t worth taking a chance.
“I’d had cancer before and I just didn’t want to take the chance that it would happen again – I wanted the problem solved.”
Alex’s case was a very complex one, for a number of reasons, as Professor Shamim Khan explains,
“Alex is very young to be receiving a neo-bladder. Normally, the average age of patients is around 66 years when they have bladder removal operation for cancer. Alex presented a number of challenges :
“A neo-bladder operation in men involves removal of the bladder and prostate gland and replace it with a new bladder made from the bowel. Removal of the prostate renders patients unable to have family without fertility treatment and can also affect their sexual function. As Alex is so young, we wanted to leave his prostate in, so that he would have a good chance at still having normal sexual function and be able to have family although we arranged sperm preservation before surgery.
“Performing this operation on someone so young, with so many complicated health problems, meant that we needed a whole team of experts to take care of Alex. Because Guy’s Hospital is a large hospital, with facilities for sperm banking besides multi-disciplinary team of nurses , dieticians, physiotherapists and expert surgeons (Professor Muhammad Shamim khan, Mr Ramesh Thurairaja, Mr Rajesh Nair, Mr Arun Sahai , Mr Sachin Malde) he was offered comprehensive care under one roof.”
“Well, for one thing, I peed normally for the first time in 7 years! I didn’t have to use a catheter, I sat on the toilet, and peed! I can’t begin to tell you how incredible that was for me. Thanks to the excellent team of surgeons I have also kept my prostate, which is huge because that means I can still have children naturally.
“Now that I’ve got this operation over with, I feel like I’ve got my life back. It took me a little while to recover from the operation, but when I went back to work, my colleagues couldn’t believe it. They told me I looked like I’d been for a holiday, not an operation!
“I’m so grateful for the team at Guy’s hospital. Everyone in the team was exceptionally good to me and my girlfriend. They walked us through everything and explained it all in great depth.”
Alex received world class treatment because he was at a powerhouse hospital with surgeons, nurses, and researchers at their urology department who have received additional training and funding from The Urology Foundation. Whilst not every hospital needs to be a powerhouse hospital, the benefits of having these hospitals can be huge.
