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This is the only cancer where survival rates are decreasing in Australia

Melissa Le Mesurier thought she just had a bad UTI. She couldn’t have been more shocked to find out it was cancer.

Four years ago, Melissa Le Mesurier went to the doctor for what she thought was a persistent UTI. Little did she know she was about to be diagnosed with bladder cancer, the only cancer where survival rates are decreasing in Australia.

Her symptoms were minimal. She was having trouble passing urine but feeling the urge to go. It gradually got worse and after not being able to pass urine for 12 hours on holiday, she knew it was time to see a specialist.

Her urologist, Professor Shomik Sengupta performed a cystoscopy (visualisation of the bladder via a camera) and a tumour was found. Just a few weeks later she was back in to get it removed (thankfully it hadn’t invaded the muscle wall or metastasized elsewhere in the body).

“The good news was that with early detection and treatment, this type of cancer has a five year survival rate of 95%. It’s not so good news for those diagnosed with a bladder cancer that has spread into the bladder wall (69% survival rate) or beyond the bladder cancer wall (33%). So, all in all, I considered myself lucky,” she says.

However, awareness and diagnosis isn’t always that easy.

“If your doctor suspects you have bladder cancer, they will examine you and arrange tests,” says her urologist Professor Sengupta.

“The tests you have will depend on your specific situation and may include: general tests (usually blood and urine) to check your overall health and body function, tests to find cancer (usually scans and internal inspection of the bladder using a fibre-optic instrument known as a cystoscope), and further tests (usually additional scans) to see if the cancer has spread (metastasised). Some tests may be repeated later to see how the treatment is working.”

As the diagnosis process is somewhat invasive, there is no national testing scheme, the same way they detect bowel and breast cancer.

This means that patients must self-report symptoms, which is a much less reliable form of detection. Without more awareness for this type of cancer and the symptoms, diagnosis can be delayed, and survival chances drop significantly.

So what are the symptoms?

“The most common symptom of bladder cancer is blood in the urine (haematuria). This usually occurs suddenly and is generally not painful. Other less common symptoms include: a burning sensation when passing urine, pain when urinating, needing to pass urine often, problems emptying the bladder, back pain or lower abdominal pain,” Professor Sengupta says.

Le Mesurier, however, didn’t have the full gamut of symptoms.

“Other than not being able to empty my bladder at times, I didn’t have any of the tell-tale signs of bladder cancer which include blood in your urine and pain when passing urine,” she says.

She also didn’t fit the bill of the usual bladder cancer patient either.

“It was completely out of the blue – I was literally stunned into silence when first told it was cancer. I think even my urologist was surprised because I was otherwise relatively healthy and didn’t fit the usual patient profile of an older male who smoked. Only about 20% of people that get bladder cancer are women and most are aged over 65.”

Le Mesurier’s story highlights why it’s so important that testing occurs even if the patient doesn’t necessarily fit into the generalised category of who gets bladder cancer. Unfortunately, it can strike anyone.

The fact that bladder cancer survival rates are decreasing is certainly not the news Le Meuriser wants to hear.

“It’s certainly scary and disappointing to find out bladder cancer is not only becoming more prevalent, but it is the only one among Australia’s 15 most common cancers where survival rates have deteriorated over the past 30 years,” she says.

Professor Sengupta says that bladder cancer’s much lower survival rate is caused by two things. Firstly, the survival rate for other types of cancers is improving with new technology, funding and awareness campaigns. Secondly, Australia’s ageing population means that the percentage of patients over 80 years old who are diagnosed has increased.

Patients of this age are frequently unsuitable for treatment, so the survival rate is much lower for them.

To improve the survival rate, Professor Sengupta has a few recommendations:

  • “Earlier detection: by improving awareness among general practitioners and the lay population. It is crucial that symptoms suspicious for bladder cancer lead to prompt medical assessment and appropriate tests.
  • Appropriate and prompt application of existing treatments: to minimise delayed or suboptimal treatment.
  • Development of newer treatments that are more effective.”

Le Meuriser had already faced a number of hurdles in her life when she was diagnosed with cancer. Her son was diagnosed with cystic fibrosis at birth, and she also had major bowel surgery (unrelated to the cancer) the same year she was diagnosed. You could say she was familiar with the medical industry by this point.

So, when the opportunity arose to be a part of a new clinical trial from ANZUP she jumped at the opportunity.

One of the treatments for bladder cancer involves injecting the Bacillus Calmette–Guérin (BCG) vaccine, which was originally created in France in the early 1900s from a live bovine tuberculosis bacteria. Originally developed to stave off TB, the immunotherapy is also effective in treating early-stage bladder cancer.

The trial Le Meuriser took part in involved the first six, weekly doses of the BCG that is usually prescribed, followed by a further nine monthly treatments alternating BCG with a chemotherapy drug called mitomycin.

“The trial is still recruiting participants, and it is hoped its results will show reduced recurrence. Thankfully (touch wood) nearly four years later I’m still cancer free,” she says.

Professor Sengupta says that these types of clinical trials are particularly important to develop new treatments for the cancer, and hopefully improve the survival rate.

“The ANZUP Cancer Trials Group is active in all areas to try and improve outcomes from bladder cancer,” he says.

To support the effort, ANZUP is holding a fundraising campaign in May, which both Professor Sengupta and Melissa Le Meuriser will be involved with. It is raising money for ‘below the belt’ cancer research including bladder, kidney, prostate, testicular and penile cancers.

Bladder cancer FAQ with Professor Sengupta

What is the bladder?

 “The bladder (along with the kidneys) is part of the urinary system. The urinary system works to eliminate the body of waste products from the blood. Urine is liquid waste made by the two kidneys by filtering blood. Urine is carried to the bladder through two tubes called ureters.

The bladder is a hollow organ with muscular walls that stretch to store urine. When full, the muscles in the bladder contract to empty it. Urine is forced out of the bladder through a tube called the urethra. The bladder can hold about 500ml of urine, but most people feel the need to urinate when it’s holding around 300 to 400ml.

The bladder, as well as the urethra, prostate (in men), ureters and the inner portion of the kidneys which collects the urine (collecting system), is lined by a layer of skin-like tissue called the urothelium.”

Are there different types of bladder cancer?

 “Cancer develops when abnormal cells in the urothelium grow and divide in an uncontrolled manner. Bladder cancer is much more common than cancer arising from the urethra, prostate, ureters or renal collecting system. In some respects, the cancers arising in these other organs have some similarities with bladder cancer.

Bladder cancer takes different forms, but sometimes mixed forms are also seen:

  • urothelial carcinoma, formerly known as transitional cell carcinoma, is the most common form of bladder cancer (80-90%)
  • squamous cell carcinoma forms thin, flat cells that can sometimes produce keratin (like some skin cancers)
  • adenocarcinoma is a rare form which forms mucus producing cells similar to some bowel cancers.”

If bladder cancer cells spread to the muscle wall of the bladder, or even beyond it is referred to as muscle-invasive bladder cancer (MIBC). If it is limited to the lining of the bladder, it is called non-muscle-invasive bladder cancer (NMIBC). If the cancer spreads further to other organs or lymph nodes, it is called metastatic bladder cancer.”

What factors increase your chances of getting bladder cancer?

 “Some factors that can increase your risk of bladder and urothelial cancer include:

  • smoking
  • older age
  • family history
  • diabetes treatment using the drug pioglitazone
  • workplace exposure to certain chemicals used in the textile, rubber, printing, cleaning,
  • farming and petrochemical industries
  • use of the chemotherapy drug cyclophosphamide
  • chronic urinary tract infections
  • long-term urinary tubes such as catheters

What treatments are there for bladder cancer?

“Many times, the best option might include more than one of type of treatment. Surgery, alone or with other treatments, is used to treat most bladder cancers.

NMIBC can often be totally removed through the cystoscope when they are diagnosed. However, a major concern with NMIBC is that new cancers often form in other parts of the bladder over time. Hence regular check-ups by repeat cystoscopy are needed, usually over 5 to 10 years. Sometimes treatments using medications put into the bladder may be used to try to reduce the risk of new cancers.

Taking out the entire bladder (called radical cystectomy) is needed to treat MIBC. This represents major surgery with substantial risks and side effects. Radiation therapy to the bladder can be used as an alternative treatment for MIBC. Radiation therapy also has known side effects.

Metastatic bladder cancer is treated by giving strong anti-cancer treatments. These treatments are sometimes also combined with surgery or radiation therapy for MIBC:

  • Chemotherapy– given in pill form or injected into a vein or muscle. The drugs then go into the bloodstream and travel throughout the body.
  • Immunotherapy –is the use of medicines to help a persons own immune system recognise and destroy cancer cells.
  • Targeted therapy– as researchers have learned more about the changes inside cells that cause cancer, they have developed newer drugs that target some of these changes. These targeted drugs work differently from other types of treatment, such as chemotherapy, and they may work in some cases when other treatments don’t.
  • Clinical trials– several ground-breaking bladder cancer trials using some of the therapies listed above, are currently underway in Australia.”
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