A young Tongan woman lost half her large intestine, a chunk of her diaphragm and her fertility to a cancer she had never heard of.
Alisi Jack-Kaufusi was 24 when she was diagnosed with a rare mix of two ovarian cancers in 2017, requiring a full hysterectomy and 6 months of chemotherapy.
The Auckland-born woman is sharing her story to raise the profile of a disease which kills more Kiwi women than melanoma, but she says remains shrouded in stigma and secrecy.
In 2017, Jack-Kaufusi was living with her best friend in the heart of Brisbane, had just been promoted, and had “the world at her feet”.
Living a busy life as a flight attendant, she had ignored symptoms of fatigue, pelvic pain and bloating, until a month of irregular vaginal bleeding prompted her to see a doctor.
She was referred for further tests, and an ultrasound showed her ovaries were completely obscured by two large cysts.
A biopsy later confirmed she had cancer. “I just shut down… I thought they had the wrong person.”
There are multiple types of ovarian cancer with similar symptoms, but different prognoses.
Most are caught late when treatment options are limited, making survival rates “extremely poor”.
Two-thirds of women have high-grade serous ovarian cancer. By contrast, only 2-5 per cent – typically younger women – have low-grade serous cancer, which is often resistant to treatment.
Jack-Kaufusi had both.
She was referred to a fertility clinic to see if her eggs could be saved, but told it was impossible. Three weeks later she was in surgery.
Doctors didn’t realise the extent of the cancer until she was on the table.
“It was like someone had sprinkled salt and pepper through my body, there were little tumours everywhere”.
Over eight hours, surgeons removed her cervix, uterus, fallopian tubes, ovaries, and half her large bowel.
After undergoing six gruelling months of chemotherapy in 2018, Jack-Kaufusi is in her second year of remission.
About a year after surgery, the weight of losing her fertility hit home when her sister had a baby.
She realised: “Wow, I’m never going to experience what it’s like to be pregnant, to carry my own baby”.
Jack-Kaufusi – adopted by extended family members – said all six of her sisters offered to have a baby for her.
One even named their daughter Alisi in her honour, which she said helped her get through the feeling of loss.
Now 27, she is working in reception for the same airline and studying business part-time. Ongoing bowel issues meant she could no longer fly.
Jack-Kaufusi she she had not heard of ovarian cancer before her diagnosis, something she wanted to change – particularly among the Pasifika community.
Ovarian cancer is one of five gynaecological cancers, and the most deadly. It largely goes unnoticed until it has advanced, as its symptoms are often conflated with less serious conditions.
These include abdominal bloating, indigestion, changes in appetite, frequent urination, changes in bowel habits and constipation and fatigue.
Jack-Kaufusi has joined New Zealand organisation Cure Our Ovarian Cancer – the only research charity in the world dedicated to the often incurable form of ovarian cancer – to inform people about the disease.
Credit: Hannah Martin, Stuff
Original Article: Stuff
Published: 1 March 2020