Imagine being 45 years old and still needing your parents’ financial support. No, this is not a case of being too lazy to support yourself or being unable to find a job.
Previously a marketing and administration executive at a multinational company, Nur Akmar Shuib and her husband decided that she would be a stay-at-home mum when her first daughter was born in 2011.
They lived a comfortable middle-class life on her husband’s income from his biotech company. A second daughter, Adeena Aida Mohd Amir Fursan, arrived two years later and life was good.
Then, “I was breastfeeding Aida one night, and while manoeuvring, I felt a lump on my upper right breast. Then automatically, my hand went under the armpit, because from what I knew at that time, you feel the breast, then you feel the armpit for the lymph nodes (for self-breast examination). And I could feel the swollen lymph nodes, so I knew, this was not good.”
She immediately went to see her general practitioner (GP), who referred her to a radiologist. The radiologist did an ultrasound, followed immediately by a mammogram.
“I guess, from the ultrasound, she could see something which did not look great, so she ordered a mammogram immediately after the ultrasound,” shares Nur. “From there, from looking at the film, I guess she knew already, so I got my first diagnosis from the radiologist, not a biopsy (as would be usual).”
It was stage 4 breast cancer, which had spread to her bones and liver. Aida was then 10 months old.
“The result was quite shocking – actually, it was more than shocking, it was unbelievable – no stage 0 or anything, it was straight to stage 4, it had already spread by that time,” she says, adding that she never felt a thing, and was perfectly fine and active.
Her first round of treatment was at University Malaya Specialist Centre, which is the private arm of Universiti Malaya Medical Centre (UMMC), as the earliest the breast surgeon was available was there, as was the oncologist that same evening.
Nur underwent a lumpectomy, radiofrequency ablation (RFA) for her liver metastases, chemotherapy and radiotherapy, which came up to about RM60,000. She was also prescribed an intravenous (IV) monoclonal antibody for breast cancer, trastuzumab, and zoledronic acid, another IV drug used to treat the problems that come with bone metastases.
Due to the costs, she requested to be transferred to UMMC for her follow-up.
A year passed with no sign of any cancer in her. Then she started hearing ringing and buzzing, having headaches, and feeling unstable in her movements.
Her biannual PET (positron emission tomography) scan detected something in her brain, and a brain MRI (magnetic resonance imaging) confirmed a growth at the back of her right cerebellum. This would turn out to be a particularly stubborn tumour – recurring twice over the next two years.
Nur had to undergo brain stereotactic radiosurgery (SRS) twice, as well as two craniotomies – the last one accompanied by intraoperative radiotherapy, making her the first patient in UMMC to have these two procedures done together in December.
All these procedures came up to a little over RM50,000 in total cost for Nur. While UMMC is a public hospital and provides subsidised healthcare, patients still have to cover certain costs for the more expensive procedures and medications.
In addition, she had to have her left ovary removed in 2016 – just a month after her second brain SRS – as the cancer had spread to it, as well as undergo a second liver RFA procedure last July to remove new metastases.
Currently, she is continuing her IV trastuzumab once every three weeks and IV zoledronic acid once every three months, and is also on oral capecitabine and lapatinib for maintenance chemotherapy to help control her cancer.
Trastuzumab, which is prescribed according to the patient’s weight, and lapatinib, which is taken daily, are the most expensive medications by far, coming up to about RM6,000 each for one dose and one month’s supply respectively for Nur.
She says: “From day one, it was my parents who have been coughing up the money. Of course, my husband still does his part, but the majority of it has been from my parents.”
She adds that the worst thing is that she was not covered by insurance as she “made the mistake of giving it up when I went to the United States”. Nur had moved to the US for two years upon her marriage as her husband was then working there.
“It has been hard – it’s very hard. And I’ve known other people who are even worse off than me – their expenses are even more,” she says.
“Look, let me be frank with you, of course, when you have this disease, you have to be strong emotionally. But at the same time, yes, I do agree when they say it’s a so-called rich man’s disease. If the disease doesn’t kill me, the lack of funding itself will just finish me off.”
She adds: “It doesn’t mean I don’t feel anything. I could spend that amount on my children’s education. It makes me feel very guilty.”
Nur shares that her parents, who are retired civil servants, also made investments in their younger days, which is were the funds for her treatment are coming from. “But my question would be, how long will it last?” asks the eldest and only girl of four siblings.
“I don’t really want to dwell on it,” she says. “I’m trying to live on a daily basis, even on a monthly basis, because sometimes you really don’t know whether you will come out of the surgery alive or like a vegetable.”