‘I was blindsided’
Young Kiwi forced overseas for high-priced tumour treatment
Jess Spence hurries in from the rain after yoga class.
Looking at her, you wouldn’t guess that the 32-year-old’s body is riddled with incurable tumours.
Spence has neuroendocrine (NET) cancer, and her best option for treatment is not available in New Zealand.
This week she’s off to Melbourne to see if she needs another round of treatment – the third time she’s taken the trip since September.
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-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.
Four sessions can cost up to $50,000, too expensive for many who must self-fund their treatment.
Before her diagnosis, Spence was ‘‘living the dream’’ in London.
When exercise became difficult, she 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. It was considered terminal. ‘‘I was blindsided,’’ Spence says. Fifteen months, and 19 rounds of chemo on from her initial diagnosis, Spence was diagnosed with neuro-endocrine 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.
But she says she is now free of pain, and has signed up for a 6km run in November. She’ll walk it.
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 have PRRT here would be phenomenally different.’’
Oncologist Ben Lawrence submitted a discussion document to Pharmac on the merits of funding the therapy for New Zealand patients, which was accepted last month.
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.’’