Woman in limbo over rare cancer treatment

For 23-year-old Olivia Fryer, three weeks could be everything.

It's how long she's been waiting to find out whether a drug she needs to fight her rare cancer will be funded by Pharmac.

"I'm in limbo. Every day I'm getting sicker and sicker. It's really scary."

She is the only person in the country to be diagnosed with the disease and one of only 20 in the world.

Fryer's battle began around Christmas 2014, when she visited her GP because of a lump under her rib.

An ultrasound and tests revealed the lump was a tumour on her kidney. Half of the organ was removed and the tumour was diagnosed as benign.

But in April this year, a follow-up scan showed the tumour had grown back on her kidney and spread to her lymph nodes.

A second surgery revealed it was also growing on her liver and a renal artery. Her kidney and lymph nodes in her chest and abdomen were removed, as was part of her liver.

After surgery, samples from the recent and older tumours were sent to Sydney for analysis.

The tests revealed Fryer had initially been misdiagnosed and in fact she had succinate dehydrogenase-deficient renal cell carcinoma. The disease is a very rare side effect of an enzyme deficiency, which means her body has no defence against tumours.

"They said there was a high chance after surgery that it would come back. I recovered, and had a clear scan two months later," Fryer said.

But two months later -- in September -- she was told the cancer was "everywhere".

The inoperable tumours had come back with a vengeance to riddle her liver, a back muscle, nodes around her heart and other parts of her body.

"They said it was life-threatening and I would need treatment for the big lump on my back to reduce the pain it was causing in my leg."

Fryer had 10 days of radiotherapy and her oncologist recommended a drug called Sunitinib.

The cost of the drug is $9000 every six weeks. It is funded for people with a different type of kidney cancer, but not hers.

"My application [for funding] has been with Pharmac for three weeks and they haven't got back.

"It grew rapidly in two months so I'm pretty scared to know what's happened in three weeks. I had a scan [on Wednesday] and I'm waiting for the results to come back.

"I just don't understand why having my cells look slightly different under a microscope dictates my life, which seems to be on an application form with Pharmac while they decide whether I get to live or not."

She said to get the drug all she needed was a prescription and a trip to the pharmacy.

Pharmac chief executive Steffan Crausaz said he could not comment specifically about a patient's situation but said in some circumstances Pharmac could fund medicine for an individual.

For "exceptional circumstances" applications, the agency used clinical advisers to deal with requests for assistance as quickly as possible.

Cancer Society NZ medical director Dr Chris Jackson said it was difficult to estimate the exact number of cases like Fryer's worldwide, but understood that it was in the frequency of 0.2 per cent of all kidney cancers.

"It is extremely rare," he said.

"As with many rare tumours, it is difficult to know exactly how best to treat this condition. Rare tumours are, by their nature, hard to study."

Jackson acknowledged Fryer's situation, but noted that Pharmac had a special mechanism for considering funding for such rare cases.

Through a Givealittle page, Fryer raised enough money -- more than $10,000 since Tuesday -- to pay for the first round of treatment, but she will need to wait for her test results to come back first. To donate to Fryer go to givealittle.co.nz

A rare disease

• Succinate dehydrogenase-deficient renal cell carcinoma is a rare kidney cancer

• It was first identified in 2004 and is caused mainly by deficiency in enzyme activity

• Multiple tumours may occur in approximately 30 per cent of affected patients

• Most tumours caused by the disease are low grade, but some may behave in an aggressive fashion

• The Ministry of Health says the cancer is so rare it is not coded for in the international system used by the New Zealand Cancer Registry.