Elise Stapleton knows exactly what she's in for when she starts chemotherapy for bowel cancer next week; she watched her big sister Lana McKay go through the same thing just two years ago.
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The Ballarat sisters are among a growing number of young people diagnosed with bowel cancer.
It's been a whirlwind for Ms Stapleton, 36, since she was diagnosed in January.
The former Loreto College student is thankful she was vigilant about changes in her bowel habits given her sister's fight with the disease, and listened to her body even when early tests showed no cause for concern.
She intially put her symptoms down to endometriosis, which she has suffered from for many years, but there were a couple of different things she could not shake.
"My bowel habits changed maybe in June or July last year. I was going to the toilet more frequently, my poo was loose, I had random sporadic abdominal pain on the left side but my endometriosis pain was always all over. I put up with it for a few months but it got progressively worse."
Ms Stapleton went to her gynaecologist who ordered a pelvic scan which found a 19mm lesion on her bowel. After referral to a colorectal surgeon an MRI at the end of October came back as "no suspicion of malignancy" and a follow-up CT scan showed nothing.
But she could not shake the feeling something was wrong.
At the same time, Ms Stapleton was planning to have a baby using donor sperm and discussed her options with her gynaecologist.
"She said you can either go down the donor path and have a baby and ignore the symptoms, or we can do surgery and have it removed because you need to be fit to be a mum."
They chose surgery - a decision that would save her life.
Having had three laparoscopies before to deal with endometriosis, Ms Stapleton was prepared and surgery planned for December, but she got COVID and the surgery was postponed until the end of January.
"I went in for surgery, thinking I'd be in hospital for a couple of days and the worst case scenario would be a full bowel resection.
"I went in quite calm and went to sleep, woke up and that's when the bombshell hit. I knew something was wrong because both doctors and two nurses were at the end of the bed ... and I've had enough surgery to know you usually have one nurse looking at you."
Surgeons had found a tumour and removed what they could, but because it was an "incidental find" not a cancer surgery she would need further surgery within weeks.
That took place in February when she had 20cm to 25cm of her bowel removed, and despite initial hopes they had caught the cancer early enough to prevent it from spreading elsewhere, it was found in her lymph nodes meaning she would need chemotherapy.
"Unfortunately if it's spread anywhere in the blood stream you need chemo to mop everything up," Ms Stapleton said.
A CT scan in hospital after her first surgery revealed a lesion on her liver and spots on her lungs, but a repeat scan earlier this month was a "win" showing she was clear.
"It was the most horrific wait. I was a ball of stress ... the worst wait of my life but thank god it was all clear. They think it was inflammation from COVID on my lungs, and the liver lesion resolved. You've got to take the small win."
The first of six rounds of chemotherapy across three months will start on Monday.
With two sisters now diagnosed, they are undergoing genetic testing to see if there is a genetic link to the bowel cancer. An aunt also died of bowel cancer three and a half years ago, and it is present on their father's side of the family.
After going through six months of chemotherapy, Ms McKay now has no evidence of cancer, but it takes five years before doctors declare a person cancer free.
Ms McKay had her chemotherapy port removed the week her sister was diagnosed.
"I've seen my sister go through it so I know what is ahead of me," Ms Stapleton said.
"When Lana was diagnosed we (siblings) were all told by the oncologist we need to be screened. We all went and had a scope two years ago and were clear - so my tumour was very fast and aggressive because it has grown in that time."
While most people think bowel cancer is something only people aged over 50 have to worry about when they receive a screening kit from the government, the reality is far different.
Every week in Australia 32 young people aged 45 and under are diagnosed with bowel cancer, and six lose their lives to the disease.
Ms Stapleton wants people of all ages to know they are not immune to the disease.
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"Listen to your body. Early detection saves lives," she said.
"Let's break the taboo with poo."
Ms Stapleton said if she had left it another six to 12 months it "could have been too late" as the cancer would have spread.
"People need to be aware and listen to their bodies. I trusted my gut and I think it's so important to trust your gut instinct.
"Don't give up. It can change your life."
Every year 1680 people under the age of 50 are diagnosed in Australia, and 290 people die. About 99 per cent of bowel cancer can be treated successfully if found early, but fewer than half of cases are detected early.
For more information go to bowelcanceraustralia.org
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