Nick’s story: Living with Chromophobe renal cell carcinoma

July 13, 2023

Nick and family

In 2020, as Nick puts it, “the world went pear-shaped”.

Living in Melbourne, Nick endured heavy COVID restrictions. As a teacher, things were particularly tough.

“We’d done almost a normal term 1 and cut that term short,” he recalled.

“I’m not built to work from home, especially as a science teacher, it’s very hard. I also had my son who was in Year 4 at the time.”

Nick started to feel something wasn’t right with his health.

“I thought I was actually getting depressed, in all honesty,” he admitted. His mental state wasn’t great, and he was losing his appetite.

An attempt to give blood raised the next red flag – Nick’s haemoglobin levels were too low. Not thinking too much of it, Nick made an appointment with his doctor.

 

Nick during covidNick during COVID 

 

But the doctor sent him for precautionary blood tests, which showed his inflammatory markers were elevated.

On the brink of Stage 4 lockdown in early August and with elective procedures about to halt, Nick went for a CT scan.

“I always take the stairs but going up the couple of flights of stairs to the imaging place, I was out of breath,” he said.

The scan showed he had a 20cm tumour on his left kidney, as well as a spot in his lung.

Within 10 days of diagnosis, Nick had completed a COVID test, isolated and was in surgery. His wife Hayley had to drop him at the hospital door due to COVID restrictions, as he went in for the eight-hour operation to remove his kidney. Following his surgery, and with much pleading, she was allowed in to visit for just an hour.

After surgery, Nick learnt his tumours were chromophobe renal cell carcinoma, meaning he had a rare cancer. He was told there were “no approved treatments”. But there was hope – a clinical trial of a drug called AK104.

“I was lucky to get on the trial,” Nick said.

“I was about the 50th person in the world to go on it, and I think maybe the first chromophobe.

“It’s like a second-generation immunotherapy.”

 

Nick and HaleyNick and his wife, Hayley

 

About a month after surgery, Nick was having his first round of treatment.

“I was really apprehensive, but about three months in we were starting to get a good response,” he said.

“It was a two-year protocol so every Monday, we had to go in.

“About 18 months in, we found out it was a complete response.

“It’s never a remission, being Stage 4, it’s always sort of hanging over your head.

“I know one day it will come up, but at this point I don’t feel it, I don’t see it.”

Looking back, Nick admits he found his surgery and treatment “quite easy” compared to the emotional toll his diagnosis took on himself and his family.

Hayley, a nurse, was coming to terms with his diagnosis while her mother was also moving to palliative care for bowel cancer.

“The hardest thing for me was seeing what my wife was going through and seeing what my kids were going through,” Nick said.

“My daughter was four at the time.

“I’ve always been the healthy one, I’m the rock. The roles had been reversed and Hayley didn’t like that.”

Nick said psychologist appointments helped his family navigate his cancer diagnosis, and strengthened his relationship with Hayley, helping them understand each other’s thought processes.

“Especially men, don’t be stoic,” he said.

“Don’t be that tough guy, being the tough guy doesn’t beat cancer. The mental side is such an important side.”

Nick is determined to remain positive, for himself and his family. He has recently had another clear scan and has made lifestyle changes through his diet and cutting out alcohol.

He’s also made a career change.

“I’m going through a mid-life crisis but instead of buying a convertible, I’m learning how to drive trains,” he joked.

 

 

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