Mum’s epic battle with skin cancers
IT began when she was 10.
Surgery was a thrice yearly ordeal, which would sound almost heavenly to her now.
At 47, Nelle Jenkins sees a doctor for surgical excisions every fortnight to remove skin cancers from her body. To date, she has endured the invasive removal of thousands.
“I got the first basal cell carcinoma (BCC) when I was 10. At the same time, my doctors discovered I had a keratocyst in my upper jaw, the size of a golf ball,” she said.
“The doctors had heard about Gorlins, but it was rare. They wanted me to fly south to do tests, but I just wanted to pretend I didn’t have anything.”
You’ve probably never heard of it, but Ms Jenkins has Gorlin-Goltz syndrome; she prefers to call it a “condition”.
“It’s a condition of my life. I like to think of myself as a positive, resilient person. People are always telling me that’s what I am. But Gorlins has sent me to rock bottom before,” she said.
Gorlin-Goltz syndrome is an extremely rare condition. Statistically, you’re more likely to meet someone who’s been struck by lightning than someone with Gorlin-Goltz. But what it lacks in prevalence it makes up in severity.
The condition produces hundreds of BCC, the most common form of skin cancer, on the hair-bearing areas of the body. It also produces pits in her palms, as well as keratocysts in the jaw that require complex facial surgery.
It can also cause facial abnormalities and rare brain tumours, from which Ms Jenkins has so far been spared.
She uses phrases such as
“all I’ve got” when referring to her skin cancer growths, as if to suggest her case is somehow a milder version.
But the truth is Ms Jenkinsrequires near constant vigilance of her health. If she was to forgo treatment, her condition would kill her.
“We lived in Port Douglas, we were at the beach all the time. But I was always sunsafe. I wasn’t one of those kids that grew up without wearing hats and sunscreen.”
Ms Jenkins said while the sun can worsen her condition, it had nothing to do with its cause.
“I have skin cancers all over me. Even if I lived on the South Island of New Zealand, I’d still get them.”
Ms Jenkins, a performing artist, has had 15 to 25 cancers removed every eight weeks for the past 17 years as her
condition has become more intense.
“The doctor asks me where I want to focus on each time. If I’m dancing, I keep away from the ones on my limbs.
“But it’s getting harder. Needles hurt more as you get older and I take longer to heal.”
Her condition worsened during her pregnancy in 2008 as her hormones multiplied the BCCs. She would receive up to 120 excisions per treatment. To help her cope, her surgeon devised a game wherein they would think of a baby name for every prod of the scalpel.
“I’d be lying there for three hours. We’d start at A and work our way through the alphabet. It kept me upbeat and positive and made me laugh even during surgeries.”
When her daughter Missy
was born, she was in a state of euphoria.
“I was balling my eyes out. She was a perfect baby.”
But even as Ms Jenkins tries to accustom herself to her condition, the world doesn’t seem to accustom itself at the same rate.
Ms Jenkins relationship with Missy’s father broke down soon after and her business, a dancing studio, suffered a huge financial loss. The cost of healthcare became too much.
“My private health bill was $1200 a quarter. Some surgeries would cost me $7000 and I could still be out of pocket $5000. I just couldn’t afford it anymore.”
Disaster compounded in 2013 when her regular surgeon moved location.
In 2019 Ms Jenkins met Dr Lee Jones, the first health
professional who she said really understood her condition.
“Dr Jones knew more about my condition than I did. I met him at the right time, 100 per cent,” she said.
Dr Jones, a GP specialising in skin care based in Smithfield, continues to treat Ms Jenkins.
He said the government should fund screening programs for skin cancers as well as provide further funding for families living with GorlinGoltz syndrome.
“It’s a lifelong condition requiring ongoing care,” he said.
“Nelle’s received an unbelievable diagnosis. She has been amazing in dealing with the innumerable surgeries.
“She’s one of the greatest