Surviving bowel cancer
It was a usual Thursday night in Gladstone and hairdresser Robyn Lindley was working on a client’s hair when she suddenly felt weak. She took herself to the toilet and discovered she was bleeding from her bowel.
It wasn’t until the next morning that she wound up in the hospital. She was given a blood transfusion because an ulcer had haemorrhaged, causing her to lose a lot of blood.
The following Monday she had a colonoscopy and on Tuesday the Royal Flying Doctors flew her to Brisbane, her husband following in the car. By the time she got to Brisbane the results from the colonoscopy had come through — she had bowel cancer.
“It all happened very quickly,” recalled Robyn of the shock diagnosis. “I didn’t really have a lot of time to think about what was happening. It was horrible being flown to Brisbane by myself and seeing a bowel specialist who tells you you’ve got cancer and you get sent out to the waiting room.”
At 28 years of age with four and a half-year-old daughter Emily and five-month-old son Jackson, getting a cancer diagnosis was tough. Robyn had just bought a hair dressing business with her husband Dave and was looking forward to fulfilling one of her life dreams.
A week after the haemorrhage Robyn had surgery to remove the tumour and part of her large intestine.
The surgery went well and after she had recovered she began 12 months of treatment — an intravenous infusion of three drugs (5-fluorouracil, oxaliplatin and bevacizumab).
One of the chemotherapy drugs, oxaliplatin, wasn’t listed on the Pharmaceutical Benefits Scheme (PBS) in 2005. Robyn was told it would cost $60,000-80,000 for her to receive treatment. She and her husband had just bought a house, a hairdressing business and had a new baby. Paying for treatment was not an easy option.
So when her doctor offered her to go onto a clinical trial, which would give her access to oxaliplatin, she took up the offer – even though it meant travelling to Brisbane every two weeks for treatment.
She arranged for her parents to mind the children and began 12 months of flying to Brisbane every fortnight.
“It was hard,” said Robyn of the treatment schedule, which included two days in Brisbane followed by a day or two at home with a portable infusion pump that continued to deliver one of the drugs into her body. “Especially leaving the kids, because Emily had started prep school and Jackson was still a baby.”
The treatment made her feel weak and tired. But being an independent person and determinedly positive, Robyn managed to maintain some of her usual routine.
“I tried to do a little bit of work here and there because we’d only just bought the salon and I was trying to run a business — but it was challenging.”
The clinical trial experience
At the end of the 12-month treatment regimen in August 2006, everything looked good. Although bowel cancer is the second largest cause of cancer deaths in Australia, if caught early, the chance for a successful cure is pretty good.
As well as gaining access to an otherwise prohibitively expensive drug, Robyn said participating in a clinical trial provided her with other benefits. The care shown by the staff at the Mater Hospital in Brisbane made a big difference to her and sharing her experience with other cancer patients provided valuable support.
“It was an eye opener because I got to meet others in the same situation, other people going through what I was going through and people of all ages, which helped me,” she recalled. “I also received knowledge about my cancer. Trials are good for collecting data and the more we can help and the more awareness we can generate about bowel cancer the better.”
But three or four months later a spot was found on her liver. “My doctor said liver spots are common and that it could be a fatty cyst,” she said of Professor Paul Mainwaring’s counsel.
But further tests in February 2007 revealed the cancer had come back as a secondary tumour in the liver. Thus began a second round of surgery and treatment.
Having a genetic test
It was around this time that Robyn had a genetic test to see whether her tumour was harbouring any mutations. Having a genetic test, which usually involves a special analysis by the pathology lab of the tumour obtained previously, helped the doctors determine the best treatment to give Robyn.
The genetic test involves looking for a gene called KRAS. Everyone and every cell has a KRAS gene. It is responsible for normal communication in cells. But when this gene is faulty or has mutations in it, cancer cells may not respond to one of our modern treatments.
It turned out that Robyn had a normal KRAS gene with no mutations in it. This meant she was less likely to to be resistant to a new treatment called Erbitux ® (cetuximab), which is what her doctor suggested she take. It also meant Robyn could avoid another round of debilitating chemotherapy.
People who have a faulty KRAS gene are not recommended to take Erbitux ® — this accounts for about40% of people with bowel cancer.
Back in 2007, Erbitux ® was not yet listed on the PBS, so the cost of the treatment was about $4000 per month.
“We took out a loan,” said Robyn. “And my friends fundraised $15,000 which was amazing.” This gave Robyn access to the new treatment at an initial cost of about $20,000.
Erbitux ® has since been listed on the PBS (in 2011) and the test for the KRAS gene was listed on the Medicare Benefits Scheme in 2012, so that patients only need to pay a relatively small amount out of pocket to receive treatment.
Dealing with side effects
One benefit of paying for the treatment was that it was given to Robyn in Gladstone, so she didn’t have to travel to Brisbane every week.
With her treatment predicted to continue for six months, Robyn and her husband decided to sell the business. They put it on the market, it sold, and treatment began.
The side effects from Erbitux ® were pretty harrowing for Robyn. She had a blistering rash on her face and on the front and back of her chest. She also lost her toenails and her heels cracked.
Even though she was on the lowest dose the side effects continued for the duration of the treatment.
“It was like the worst sunburn you could imagine, the burning. I used fresh aloe vera, I kept a supply in the fridge and smothered it on my face, that was the only thing that would keep it cool and give me relief,” she said. “Then after the hot stage it turned into a dermatitis stage, which was very itchy and scaley.”
Rash is a common side effect of Erbitux ® and, ironically, the presence of a rash may indicate that the treatment is working.
Then Robyn’s treatment was extended to 12 months. After which her doctor suggested she stay on it indefinitely but because the side effects were so gruelling she chose to stop. It was becoming too much and she wanted to regain her health.
Early detection is key
The strain on Robyn’s personal life was huge. Newly married with a baby the treatment took its toll. She felt old when she was not yet 30.
“I was sick all the time, my husband was helping me dress,” she recounted. “My quality of life was bad and financially it was a huge strain.”
Emotionally she experienced a gamut of feelings, including fear about her future, her children, her husband and what this would mean for them. Some days were better than others but she soldiered on. Her family kept her going and the flexibility of her husband’s work was a blessing.
“Maintaining my working life also helped because it was about me as a professional hairdresser not me as the sick person with cancer,” Robyn said, adding that she now she has a better understanding of how she can help others.
“People are scared or they’ll dodge you even,” she explained of how people dealt with her and her diagnosis. “They don’t like to talk about bowel cancer, they associate it with old people.”
But bowel cancer is not an elderly person’s disease. It affects young people as well, as Robyn can testify.
“But if we can talk about it more it makes people think more,” she said.
Bowel cancer can be difficult to recognise because some of the symptoms are similar to those women undergo when menstruating, such as bloatedness and change in bowel habits; or a change in bowel uncomfortableness because of overeating or eating something that doesn’t agree with you.
“Go and get checked,” she emphasised, “have a colonoscopy or speak to your GP about a simple screening test especially if you are over 50 years of age. Detecting it early is the key to prevention and makes it easier to treat.”
This is the main message Robyn has for others — to get checked, even if you are unsure.
One of the biggest challenges for people is the colonoscopy, said Robyn. “It’s not the most pleasant experience and people are put off by it because of the prep — and it is uncomfortable — but it’s not that bad and could save your life.”
On the other side
Robyn has always wanted a big family. Although having cancer made her question her motives. Was she being selfish? She already had two healthy children. What if the cancer came back? But then she would think, what if it doesn’t come back?
Ultimately she decided to go with her heart and not allow the cancer to dictate the decisions she made any more than she had already allowed it to.
She agreed to wait two years before trying to fall pregnant again because the likelihood of the cancer coming back within that time was high — but if the colonoscopy was clear she decided she would give it a go.
She fell pregnant straight away and along came Max who turns two years old this year.
Having the chance to fall pregnant again has helped Robyn get her life back on track. The new baby has brought joy into the family and helped them move through the trials of living with cancer for so many years.
“It’s what I wanted,” Robyn said of her third pregnancy. “Max is like a reward.”
As of this year Robyn is five years cancer free. She has a blood test every three months and a scan every six months.
Talking with Robyn is inspirational. Her positive perspective on life and willingness to share her story for the benefit of others is a testament to her courage. Having successfully responded to her treatment has enabled Robyn to get back in the workforce and pursue her dreams again.
This story is published with thanks to sponsorship from Merck Serono.