Neuroendocrine cancer sufferers take on Pharmac

Jess Spence was misdiagnosed with bowel cancer and underwent 19 rounds of chemotherapy before it was discovered she had ...
LAWRENCE SMITH/FAIRFAX NZ

Jess Spence was misdiagnosed with bowel cancer and underwent 19 rounds of chemotherapy before it was discovered she had neuroendocrine cancer.

Jess Spence hurried in from the rain having just finished yoga class. 

Looking at her, you wouldn't guess that the 32-year-old's body is riddled with incurable cancerous tumours. 

Spence has neuroendocrine (NET) cancer, and her best option for treatment is not available in New Zealand. 

Neuroendocrine cancers don't often respond to chemo, so people like Spence have to go to Melbourne for treatment - at ...
SUPPLIED

Neuroendocrine cancers don't often respond to chemo, so people like Spence have to go to Melbourne for treatment - at the cost of $50,000 for four rounds.

This week she's off to Melbourne to see if she needs another round of PRRT treatment – the third time she's taken the trip since September.

READ MORE:
Cancer charity 'jumping up and down' to get treatment in NZ
'Staggering' breast cancer trial kills tumours in 11 days
Strangers help cancer-stricken father

NET tumours can grow anywhere in the body, and tend to do so slowly – they're hard to diagnose and hard to treat. 

Peptide receptor radionuclide therapy, or PRRT, is a form of targeted molecular therapy used in patients with NET cancers. It attracts and attaches to tumour cells -–killing them. 

Spence, along with the Unicorn Foundation NZ, a charity supporting people with neuroendocrine cancers, are petitioning Pharmac to fund the treatment. 

PRRT is administered through an IV line for four hours, over four sessions, six to eight weeks apart.

The cost of four sessions can be $50,000, out of reach for many who have to self-fund their treatment.

Before her diagnosis, Spence was "living the dream" in London. 

When exercise became difficult, Spence saw a GP. She walked into a doctors' surgery for a routine colonoscopy and walked out with a diagnosis of bowel cancer.

While the tumour in her bowel was operable, a PET scan indicated the cancer had metastasised to her bones. She was considered terminal.

"I was blindsided," Spence said. 

Fifteen months, and 19 rounds of chemo on from her initial diagnosis, Spence was diagnosed with neuroendocrine cancer.

Before her second round of PRRT in November, Spence couldn't move her right arm – she couldn't even shower. Two-thirds of her scapula was consumed by tumours.

They had also spread to her ribs, bowel, pelvis and spine.  

She said she is now free of pain, and has signed up for a 6km run in November - "I'll be walking." 

The PRRT has given her time, but the tumours will keep coming back. 

Having to travel to Australia every few months is a heavy emotional and financial burden to carry, she said.   

"To have PRRT here – to go in for three hours and then home to my own bed, my home and family support - would be phenomenally different."

Oncologist Dr Ben Lawrence submitted a discussion document to Pharmac on the merits of funding the therapy for New Zealand patients, which was accepted in April. 

PRRT is only offered to people whose cancer cannot be treated using surgery, Lawrence said. 

For these patients it is the "holy grail."

While it does not work the same way for everyone it can have a profound difference, he said.

"It can buy people more time."

 - Sunday Star Times

Comments

special offers
Ad Feedback