When 48-year-old Laura MacKenzie was diagnosed with a very rare form of bladder cancer, her only treatment option was an invasive surgery that left her with two stomas. You’ll see from her photos that this surgery has given her a second chance at life to continue doing the things she loves, like travelling.
Laura, who lives in Scotland, has shared her unique story with us to smash stoma stigma and help raise awareness for bladder cancer. Continue reading to discover her difficult but inspiring journey, written in her own words.
My unusual journey with bladder cancer: From a rare diagnosis to recovery
“When you hear the words “bladder cancer” your mind might jump to the assumption that it’s easy to catch early. That wasn’t my experience. My journey took an unexpected path, marked by years of recurring infections, a rare and aggressive cancer, and a life-saving operation that only a handful of surgeons in my country were trained to perform and left me with two stomas. This is my story of surviving stage 4 invasive squamous cell carcinoma of the bladder – a diagnosis so rare, it accounts for less than 5% of bladder cancer cases globally.
Read: What is a stoma?
A lifetime of UTIs and a missed pattern
From the age of seven, I suffered recurring urinary tract infections (UTIs). Over the years, I was prescribed antibiotics each time without any real exploration into why they kept coming back. In the two to three years before my cancer diagnosis, the infections grew more frequent and severe. But like many patients, I was treated symptomatically rather than holistically. Unfortunately, that meant the warning signs of something more serious were missed until it was almost too late.
When I knew something was wrong
The turning point came when I experienced a symptom I couldn’t ignore: I noticed what looked like faeces in my urine. At first, I assumed it was blood and that I was simply dealing with yet another UTI. But something felt different. I pushed for further investigation and that decision likely saved my life.
Diagnosing the origin
By the time the cancer was found, it had already spread through the bladder wall and into my pelvic area. It was stage 4 invasive squamous cell carcinoma of the bladder. Scans suggested it might have originated in the bowel due to the extent of invasion. It took 29 days after major surgery to confirm via pathology that the primary tumour was in my bladder.
Read our guide to travelling with a stoma
What is squamous cell carcinoma of the bladder?
Squamous cell carcinoma is associated with long-term irritation or inflammation of the bladder lining. This could come from infections, prolonged catheter use, or, as in my situation, decades of undertreated UTIs. It’s rare in the UK and United States and tends to be diagnosed only in later stages, often because the symptoms mimic more common, benign issues like UTIs.
I had never heard of squamous cell carcinoma of the bladder before my diagnosis, and neither had many of the healthcare professionals I encountered early on. It’s a cancer more commonly found in regions of Africa, often linked to schistosomiasis, a parasitic infection carried in contaminated water. But I had never visited any of those countries. In my case, doctors believe the cause was chronic bladder irritation from my recurrent UTIs.
Find out more: Why would you need a stoma?
The only option: Total Pelvic Exenteration (TPE) with two stomas
With time running out and no other treatments available, I was told I had one option left: a radical procedure known as Total Pelvic Exenteration (TPE). Without it, I had about two weeks to live. For me, there wasn’t really a choice. It was my only chance at survival.
TPE is not a common surgery. It involves removing all pelvic organs and is usually performed for recurrent gynaecological cancers like advanced cervical cancer. It’s incredibly invasive, carries a high risk of complications, and requires a surgical team with rare expertise. At the time of my operation, only three doctors in Scotland were trained to perform it. I was fortunate – two of them were in the room during my surgery, which involved a team of 18 medical professionals, including four specialist consultants.
The surgery left me with two stomas which are both permanent:
- An ileal conduit for urine
- A colostomy for faeces
Eight years later
Today, as I write this, I’m proud to say that I’ve been cancer-free for nearly eight years. My recovery wasn’t easy. TPE comes with lifelong changes, daily adjustments, and a whole new relationship with your body with two stoma bags. But through it all, I kept meticulous notes during my treatment, asked questions, and sought connection with others who’d been through the same. I’ve since spoken with other TPE patients and medical professionals, learning and sharing along the way.
If there’s one thing I’ve taken from this experience, it’s that you must be your own advocate. I wish my chronic UTIs had been taken more seriously earlier, but I’m grateful that I pushed for answers when I did.
To anyone facing a rare or late-stage diagnosis: Don’t give up. Ask questions. Seek out specialists. There is always hope, even in the most unexpected places.
If you’ve had a similar diagnosis or surgery, or if you’re a patient looking for support, feel free to reach out. My Instagram is @2bagsforlife.”
Conclusion
We’d like to thank Laura for bravely sharing her amazing story with us. We are always looking for ostomates who’d like to share their experiences, so if you’d like to tell your story on our platforms, email info@rhodespharma.co.uk or fill in our contact form to let us know.
If you are worried about your symptoms, contact your GP or NHS 111.
Further reading
Bladder cancer – NHS
Urostomy – Macmillan Cancer Support
Understanding your colostomy – StoCare
Celebrities with a stoma – StoCare
Gabrielle’s story: Ileostomy surgery and beyond – StoCare
