Double Trouble – The Road to Two Ostomies

My bladder cancer journey is quite unique. My bladder cancer diagnosis was stage 4 invasive squamous cell carcinoma. This is a rare form of bladder cancer.

My specialist doctor advised me that it accounts for less than 5 percent of all bladder cancer cases globally. He advised me that it is most commonly found in African countries and linked to a water-carrying parasitical infection called schistosomiasis. I hadn't visited any high-risk countries so in my case it was attributed to the repeated UTIs I had suffered from an early age.¹

What is squamous cell carcinoma in the bladder?

Squamous cell carcinoma is associated with chronic irritation of the bladder. For instance, from an infection or from long-term use of a urinary catheter. Squamous cell bladder cancer is rare in the United States. It's more common in parts of the world where a certain parasitic infection (schistosomiasis) is a common cause of bladder infections.²

The cancer was found late. My first symptom was passing feces in my urine. I initially thought it was blood and another UTI.

Chronic UTIs

I had suffered and had been treated for UTIs on and off since I was 7 years old. The 2 to 3 years leading up to my diagnosis, I had seen the frequency and severity increase. Each time it was treated with antibiotics.

Due to the advanced stage of my bladder cancer, developed through the bladder wall and into my pelvic area. It was hard to diagnose the origin; initially, it was believed to have originated in my bowel.

Confirmation that the origin was the bladder only can 29 days after surgery when the pathology results came back although the numerous pre-operative scans had started to point to origination in the bladder.

TPE is radical and reserved for extreme cases

As I write this article, I realize I have a lot of knowledge about my surgery. This is mainly due to the diligent and detailed note-taking that I took at every appointment with the colorectal doctor who would carry out the surgery and lead the team of 18 medical staff - including 4 specialist doctors. I have also gained a lot of knowledge talking to fellow total pelvic exenteration (TPE) patients, and other experts in the field.

TPE is considered radical surgery - it is very invasive. It can only be carried out by specialist colorectal and urology surgeons, trained in the procedure. In Scotland for example, there are only 3 specialist doctors who are trained to carry out the surgery at the time of my operation, 2 of which were involved in my operation.

It is only carried out when there are absolutely no alternatives and when the cancer is contained within the pelvic area. It involves removing all organs from the pelvic areas and results in the creation of two ostomies. In my case, an ileal conduit and a colostomy. TPE is most often used for recurrent gynecological cancers such as cervical cancer. TPE carries double the mortality rate of a normal operation and postoperative complications are likely in almost 100 percent of cases.³

To save my life

So why the surgery? Firstly, in my case, it was the only option to save my life. I had about two weeks to live at the time of surgery. Secondly, despite the complexity of the surgery, it is done with the goal of curing rather than treating the cancer.

Four years on, I am currently still cancer-free.