Neuroendocrine tumour (NET) survivor, Malek Abdul Aziz was told he had only two years to live – but that was six years ago!

Malek Amir Azmin bin Abdul Aziz was a regional manager with a multinational logistics company. His work required him to travel frequently, which made it challenging for him to maintain a healthy lifestyle. He barely exercised and often ate whatever that was served to him on his flights and in hotels. Then in 2016, at only 49, Malek received a shocking and life-changing diagnosis.

Early warning signs

For over a year before his diagnosis, Malek had been experiencing loose stools fairly regularly, which was sometimes accompanied by bleeding. This he attributed to a combination of meals made irregular by frequent travel, high stress levels, as well as lack of sleep.

In December that year, he began vomiting. “At first my wife and I thought it was due to severe food poisoning – perhaps from a bad meal on my last trip – so it didn’t occur to me to seek medical treatment. I only admitted myself to the KPJ Ampang Puteri Hospital in Kuala Lumpur when it did not stop after two days.” says Malek.

Undergoing emergency surgery – and hearing shocking news

After undergoing various emergency assessments, Malek’s general surgeon, Dr Abdullah Taha, revealed he had a suspicious mass in his small intestines which must be removed immediately.

Malek underwent surgery the next day, where the mass along with six feet of his small intestines were removed, and sent for biopsy.

“Five days later, Dr Abdullah, along with oncologist Dr Azura Deniel, conveyed the results of the biopsy to me; the mass in my intestine was an neuroendocrine tumour (NET) which had metastasised to my liver. I was told it was stage 4 cancer, and I had only two years to live,” Malek shares.

Comfortable and effective treatment

Malek was hospitalised after his surgery and he was discharged to recuperate at home after 10 days. He continued undergoing outpatient cancer treatment which involved monthly somatostatin analogue (SSA) injections to reduce the tumour’s cell growth and reduce NET symptoms such as diarrhoea. In 2020, after five years of treatment, he was told he no longer needed the injections as his tumour was under control, and he was no longer experiencing symptoms.

“In 2019, I was advised to start a treatment called peptide receptor radioligand therapy (PRRT), a form of targeted therapy which targets and destroys NET cells. Initially PRRT treatment was scheduled once every three months at Sunway Medical Centre, but the frequency was then reduced to to once every six months.”

Fortunately, Malek did not experience much discomfort from the treatments, although his keratin levels fell to 60% from the healthy level of 95%. Keratin is a naturally occurring protein found in hair, nails, and skin.

He also learned that unlike most other cancers, NETs are relatively slow-growing tumors which tend to respond well to treatment.

“Although I still have cancer, I’m relieved the tumour in my liver has not increased in size thanks to ongoing PRRT treatments. I’ve been fortunate that I don’t have any other co-morbidities such as diabetes, which has helped keep my condition under control,” he says.

Living a full life with NETs

Malek lost 21kg in just two weeks after surgery as he could barely eat following the procedure. For the first few years after his diagnosis, he avoided red meat upon his doctor’s advice.

He says, “I’m putting weight back on of late but I’m determined to keep it under control as I’m aware the excess weight puts me at higher risk of diabetes which runs in my family, and other co-morbidities.”

An optimist, Malek has never allowed his diagnosis to slow him down. After his surgery, he took only a month’s leave, and resumed travel for work as soon as he could, although his trips were shorter and not as frequent as before the diagnosis.

Since retiring in 2020, Malek has kept himself busy by volunteering at the neighbourhood mosque and other religious charitable organisations, as well as spending time with his newborn granddaughter.

In keeping with his philosophy of living life to the fullest, he has also applied to return to university to earn a Masters in Economics.

“If you ask me, life and death is God’s will; it has been almost six years since my diagnosis. I believe in taking each day as it comes and making the best of my circumstances.”