The unexpected realities of receiving a cancer diagnosis when young

Australia Broadcast Center

3 days ago

It wasn't until Ashlynn Heaton was about to be wheeled into theatre to have an ovarian cyst removed that doctors told her scans revealed it was probably cancer, and she'd need her right ovary and fallopian tube taken out.
Aged just 26 at the time, she had already delayed the surgery by six weeks to complete a work placement and it was an abrupt interruption to a life busy with work, university and her first boyfriend.
"I didn't know that cancer in young people really existed," she said.
As a young woman, she was concerned about surgical scars and how to preserve her chances of having children in the future.
She was also put into medical menopause and was left to deal with the symptoms.
Within weeks, she broke up with her partner as the prospect of dealing with fertility questions proved too overwhelming.
"The reality was that I couldn't handle having to go through this health challenge plus the relationship," she said.
Determined to finish her degree, Ashlynn was soon juggling the physical demands of intense daily chemotherapy and trying to finish university assignments in hospital.
"Just even standing was really hard," she said.
"If I sometimes couldn't pack my bag, my mum or my sister had to pack it for me and then I'd get in the car and drive myself to chemo."
She's one of an emerging group of young people receiving a cancer diagnosis.
For this generation, there are limited supports.
Dr Peter Diamond, Chair of Cancer Council's Supportive Care Committee, said younger patients typically accessed information online and the Cancer Council were seeing an increase in the number of clicks on information relating to cancers for younger people.
"The big thing that we hear about, if you are diagnosed and have young children, is how do you talk to young children and teenagers about cancer," he said.
He said younger patients were often not set up financially and had little superannuation to draw on if they were in difficulty.
"People end up financially struggling quite a lot," he said.
Assistance to cover dealing with treatment side effects such as fertility issues or sexual function also varied state by state.
"They also have a lot longer to live with those side effects than people who would probably be diagnosed later in life," Dr Diamond said.
He said there were lots of supports available but the problem was having good navigation and coordination to ensure people got help from the start and not when they reached crisis point.
"What we find is that people are reluctant to call because they think that there are people out there who are way worse than what they are," he said.
Treatment left Ashlynn isolated as she couldn't see friends while her immune system was suppressed.
And, some of her social network didn't have the life experience to know how to properly support her.
Reflecting on it now, Ashlynn said while there were many children's cancer charities and support groups, there were few options for young women.
There was also limited publicly funded psychological help, especially to help navigate the anxiety around regular scans and concerns over her fertility.
"Finding that new normal is a real challenge," she said.
Unable to work, the medical bills started to add up and without large savings, she struggled financially.
"It just it took a toll on me. Can you afford your medication? Can you afford getting fuel?"
At a practical level, Ashlynn said what would have helped was transport to chemo appointments, with hospital parking costs alone adding up to about $500 during her three-month treatment.
For Andrew Saliba, a bowel cancer diagnosis not only brought the perils of chemotherapy and radiation treatment, but he had to navigate its side effects while juggling two small children.
"I had a port-a-cath installed — they put it under your skin just above your chest. So having that and then having the kids wanting to give you a cuddle and they climb on you — it's very painful," he said.
"We were always trying to remind them to be careful of Daddy — so they kind of knew Daddy's sick in his tummy but they didn't know the extent of it."
During his chemotherapy treatment and with a suppressed immune system, Andrew had to stay at his in-law's house when his family caught COVID.
On another occasion, he ended up in emergency with a fever.
Andrew said with each treatment his mental health declined and his relationship was put under stress.
"There were lots of times I said I'm not doing any more treatment because it's too hard," he said.
"I was very moody some days, so that obviously put a bit of a strain on the relationship but at the end of the day I think it has definitely brought us closer.
"My wife was amazing through it. She picked up the slack."
The couple were still paying off their house and as Andrew's treatments ramped up, he had to give up his job as an electrician, placing the family in financial difficulty.
He said if it were not for employer-supplied income protection insurance, they would not have stayed afloat.
"The biggest thought I had was, 'What's going to happen to my family if I'm not here?', because I was the main income earner."
In the darkest days, Andrew wanted to give up treatment many times, but he said it was after he had his stoma removed that the real problems began.
A stoma is a surgically created opening in the abdomen with a bag attached to collect stool.
As his bowel recovered, Andrew found himself needing to go to the toilet between 20 and 50 times a day and he didn't leave the house for three months.
Returning to work seemed impossible, but eventually he got on top of things, with the help of nutritionists from Bowel Cancer Australia.
Even barbecues with friends took on a different flavour with Andrew needing to bring his own food and cook it in the oven instead of on charcoal to help keep his bowels in check.
"It definitely sucks now I can't really drink much because it makes my stomach play up — I can't have a barbecue cooked on charcoal.
"Going to a restaurant is hard because I can't eat garlic. I can't eat onions."
These days, Andrew is trying to make the most of life and has scaled back at work to coach his daughters' rugby league teams.
"I kind of used to be work first, now I'm a bit more family first."
Andrew said a practical support for anyone going through bowel cancer would include a referral to a nutritionist who could offer advice to help manage bowel movements.
"The nutritionist helped me probably the most out of anyone. I had to eat smaller meals. I went straight to eating boiled rice and a few veggies and really watching what fibre I ate."
His message is to get checked early to avoid the worst side effects of serious treatment.
"If you really think something is wrong, go get a second opinion."