If you thought that bowel cancer was an older person’s disease, you wouldn’t be alone. I thought the same thing, right up until the age of 35 (when I had three children under the age of six, including an eight-month-old baby) I was diagnosed with Stage 3 bowel cancer.
My story is confronting and hard to believe. How does a young, energetic, average built, healthy-eating, non-smoking mother go from being a regular, healthy person to a Stage 3 bowel cancer patient in a matter of weeks? Unfortunately, for me, the answer is quite easily and unexplainably.
A growing number of young women are being diagnosed with bowel cancer – Australia’s second most-deadliest killer – every year. Australia has one of the highest rates of bowel cancer in the world – with more than one in 13 people being diagnosed in their lifetime. You can read the stories of five women touched by bowel cancer that Women’s Agenda interviewed here.
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According to Bowel Cancer Australia, there has been a 186 percent increase in people diagnosed aged between 15 and 24 years over the past three decades. Bowel cancer is the most common form of cancer death for people aged between 25 and 29, yet science and medicine are still unsure what causes its early onset.
Early symptoms of bowel cancer in many young women are disregarded, even by doctors, initially.
In my case, most things could be explained. For example: fatigue (I had an eight-month-old baby who was still waking several times a night to be breastfed), stomach pain (perhaps muscle separation from pregnancy or carrying the baby around) then blood in my stool (maybe some dreaded haemorrhoids after the birth?).
But I believe a few factors led to my diagnosis and eventual remission. The first was my determination to find answers about my symptoms. At least two doctors passed off my symptoms as an infection and even “being a tired mother”. The second was my GP’s advocacy and encouragement to undertake more tests. I remember her distinctly telling me: “Jane, being a tired mother does not cause you to bleed from the bowel”.
The third factor was having private health insurance and being able to essentially “fast track” my colonoscopy and diagnosis. It’s a contentious topic. My care, once diagnosed, I have no doubt would have been managed very well in either a public or private hospital. However, as a young person with no prior risk factors for bowel cancer, I may have been forced to wait months for a colonoscopy. With Stage 3 cancer, and already some cancer cells in my lymphatic system – waiting months could have cost me my life.
The fact that if you can afford to pay to have private health insurance, you can effectively jump the queue and have diagnostic tests done quicker than a public patient is something I find frustrating and grossly unfair. We often talk about Australia’s first class medical system – but when it comes to colonoscopies, there are some huge inadequacies. It is not uncommon in some regional areas of Australia, for people to wait six months for this procedure.
Treatment options for people living with bowel cancer varies, depending on a range of factors from the location of the cancer, to the staging of the cancer.
In my case, I had a few days to process my diagnosis before I had an operation to remove around 30 centimetres of my large intestine. My surgeon was able to perform my surgery through some small keyhole incisions and I didn’t require a stoma (which many bowel cancer patients do). It was found that I had a small number of lymph nodes impacted by the cancer, but the cancer had not yet metastasised. I was offered “mop up” chemotherapy, which was administered 12 times over a three-day infusion period over six months.
Almost three years since my diagnosis, I am thankfully in remission, however the shadow of bowel cancer follows me to this day. Three monthly blood tests and oncology visits, combined with six-monthly CT scans and annual colonoscopies remind me how quickly things can change.
Bowel Cancer Australia Director, Associate Professor Graham Newstead, says when he started working as a colorectal surgeon decades ago, bowel cancer was very much seen as an “older person’s disease”. Today, however, there’s an increasing global trend of people under 50 being diagnosed with the disease. In fact, a major study by the American Cancer Society found that, compared to those born in 1950, for people born in 1990, the risk of bowel cancer has doubled, and the risk of rectal cancer, in particular, has quadrupled. Slightly more women than men are diagnosed with early onset bowel cancer.
“Risk factors associated with early-onset bowel cancer remain unknown,” Associate Professor Newstead told Women’s Agenda.“It is important, no matter what their age, to know their own bodies and recognise when something is not normal. Anyone who experiences abdominal pain, persistent changes in bowel habits, blood in the bowel movement or rectal bleeding, or unexplained tiredness or weight loss for around two weeks or more should see their GP immediately.”
Bowel cancer is Australia’s second deadliest cancer. So, where’s the funding?
There are still some taboos in discussing bowel cancer, and it certainly does not receive the Government funding and community support that other cancers do. This, according to Associate Professor Newstead leads to “real inequality in how patients are treated and how much research is done to find new cures”.
“If you don’t have one of the two cancers that have a nurse [breast cancer and prostate cancer], that’s where the feeling of being diagnosed with the “wrong cancer” is stark – they don’t have the support services there when they need it most,” he said.
“We’re all taxpayers at the end of the day. When you see millions going to one or two cancers, that’s when I think the inequities and disparities become obvious.”
According to data compiled by The Age, between 2009 and 2018, bowel cancer research received about $139 million in National Health and Medical Research Council funding, whereas breast cancer received $227 million and leukaemia $229 million respectively.
Bowel cancer: the facts
- Bowel cancer is the most common cause of death for people aged between 25 and 29.
- Australia has one of the highest rates of bowel cancer in the world; 1 in 13 Australians will develop the disease in their lifetime.
- Bowel cancer is Australia’s second deadliest cancer.
- Of those diagnosed with young-onset bowel cancer, 49.2% are male and 50.8% are female.
- 15,352 Australians are diagnosed with bowel cancer each year, 1,531 (10%) of whom are under the age of 50.
Bowel Cancer Australia launched the Never2Young initiative to raise awareness about bowel cancer in younger people and to provide tailored support for young-onset bowel cancer patients and their loved ones. For more information visit nevertooyoung.org.au or call the Bowel Cancer Australia helpline on 1800 555 494.