Maureen is a bladder cancer survivor living with a stoma.
She is healthy, happy and enjoys spending time in the garden, going to music festivals, and watching her grandkids grow. This is her journey through bladder cancer, which all started with frequent urination at night (nocturia).
Maureen’s experience with incontinence was not long, but had a permanent impact on her life. In May 2021, aged 71, she went to her GP for routine blood tests and mentioned she had been waking at night to use the toilet. The GP tested her urine and found traces of blood. He referred her for a pelvic ultrasound which uncovered a lesion (tumour) in her bladder. At this point, she had no pain and didn’t think it was anything serious. While waiting for an appointment with the urologist to discuss her bladder lesion, she woke one day in June 2021 with pain and the need to urinate every few minutes. Unable to go too far from the toilet, her daughter collected an antibiotic script from the GP for a suspected UTI.
A few days later in the early hours of the morning, Maureen woke in extreme pain and had to call an ambulance. “I am not one to make a fuss, but the pain was worse than I experienced in childbirth with my three kids, and I knew it was an emergency,” Maureen recalls. On the way to the hospital in the ambulance, Maureen was given morphine due to the intense pain she was suffering.
Once at the hospital, they did a CT scan and she was prescribed medication to manage the symptoms. At this stage, there was no mention of anything sinister in the bladder. Maureen remained on the medication to help her incontinence symptoms for a month until she was able to see the urologist. He sent her for a cystoscopy to examine her bladder and told her she had a rare aggressive leiomyosarcoma. Using an MRI, PET scan and a biopsy, the urologist confirmed it was a muscle-invasive tumour that had not spread.
"It was a total mystery and shock to get a cancer diagnosis," Maureen recalls. " I have never smoked, although my dear Mum did for many years – as they did back in the 40s and 50s. I mention this because there's currently an ad on TV warning against smoking as it can lead to bladder cancer. There's no history of cancer in my family and it sure came like a bolt from the blue!"
Although Maureen’s surgery cured her pain and incontinence, the addition of the stoma has changed her life.
Treatment
Maureen underwent surgery to remove her bladder (cystectomy), uterus (hysterectomy), and lymph nodes. The urologist said due to the wall of the bladder being thin it couldn’t be saved. During the lifesaving procedure to get rid of her cancer, Maureen had an ileal conduit (stoma) to replace the function of her bladder.
What happens when your bladder is removed?
During the surgery, the urologist removed Maureen’s bladder and used a part of her small intestine that links to the kidneys to create a stoma. The stoma is a small tube which collects urine in a bag outside your body. Maureen was shown how to change the bag and can now care for it independently.
“I feel very lucky to be cancer-free and be enjoying my life with my six grandkids”
Living with a stoma
Having a stoma is a huge change both physically and psychologically. Maureen tries not to dwell on the stoma and keeps herself busy and positive by getting out and about. “I have to be aware of it in the garden, and you are advised not to lift anything heavier than 10kgs,” says Maureen. She has also joined stoma support groups over Zoom organised by Bladder Cancer Australia (beatbladdercanceraustralia.org.au) and the NSW Stoma Association.
Six months after her surgery, Maureen developed a parastomal hernia, which happens in many stoma patients due to the abdomen being weakened by the operation. It doesn’t give her pain, but she does feel very conscious of it in terms of body image because it protrudes from her lower abdomen. “I am always telling my grandkids to cherish their healthy bodies. I have generally been very fortunate with good health over my life. I stay active, connected, positive and always keep the glass half full.”
Preventing a parastomal hernia
Parastomal hernias are very common among bladder cancer patients. However, there are things you can do to reduce your risk after surgery.
- Avoid heavy lifting
- Strengthen abdominal muscles with appropriate exercises from a physio
- Use support belts or underwear
- Prevent constipation and straining on the toilet by staying hydrated, eating fruit and veg, exercising regularly, and maintaining a regular toilet routine
- Manage your weight to avoid extra pressure on the area
"I'd like to ensure bladder cancer patients are well educated on ways to minimise the development of a parastomal hernia. For example, taking care lifting heavy items and wearing support garments offered on the stoma scheme.”
If you are experiencing frequent or urgent urination and are concerned about your bladder, contact your GP or call the free National Continence Helpline 1800 33 00 66 8am-8pm AEST Mon-Fri to speak to a continence nurse specialist.
Read more from Bridge: https://issuu.com/continence.org.au