Living with a Rare Cancer “Saved My Life”
Mrs Wendy Tan-Kuah has known adversity her entire life. When asked where she gets her strength from, the indomitable 64-year-old points to various moments from her past.
As a child, she had to confront her father’s gambling addiction. When she was just seven, he threatened to kill her in front of her grandmother if he didn’t receive money to pay off his debts.
At 22, she started her own business and built it into a thriving educational consultancy that still stands today.
As a mother, she raised a son with autism, supporting him to achieve a Master’s Degree.
Such experiences fortified Mrs Tan-Kuah when the time came to face her biggest adversity – an advanced cancer diagnosis at 55.
It started in 2014 when she received a call from a former client urging her to go for cancer screening. It turned out that the man’s wife had recently died from ovarian cancer. He was making it his mission to tell his female friends to get themselves checked out.
Heeding his advice, she did just that. But while her ovaries were fine, the doctors detected a 5.5cm tumour near them. This turned out to be leiomyosarcoma, an extremely rare cancer that affects the connective tissues.
Even after a surgery to remove the tumour, a subsequent PET CT scan revealed that the cancer had spread to multiple parts of her body. She was effectively in stage 4 with no prospects of a cure.
“I went outside [the oncologist’s clinic] and started crying,” she recounts. “People retire and enjoy life at 55. But at 55, I had to deal with cancer.”
Getting to Grips with a Rare Cancer
The first challenge Mrs Tan-Kuah faced was the sheer obscurity of leiomyosarcoma. “I didn’t even know how to spell its name!”
Leiomyosarcoma is a member of the sarcoma group of cancers, which arise in the bones and connective tissues. In Singapore, sarcomas comprise less than 1 per cent of all malignancies in adults.[1]
At the time she was diagnosed in January 2015, there was no sarcoma support group in Singapore. Through her oncologist’s recommendation, she was given the opportunity to join a closed Facebook support group for leiomyosarcoma, based in the United States of America.
Through this, Mrs Tan-Kuah found many survivors, some of whom had lived up to 24 years following their diagnosis. It steeled her resolve. “I’m going to be like them,” she promised herself.
Surgery and Rehabilitation
After extensive reading, Mrs Tan-Kuah opted against chemotherapy and chose surgery to improve her quality of life. Yet, this was a path fraught with challenges.
Doctors refused to operate on her. Her largest tumour was wrapped around her arteries and veins, making the risk of death in the operating theatre high.
But Mrs Tan-Kuah was desperate. The tumours were pressing against her intestines and bladder, making it near-impossible for her to pass urine and faeces with ease. And so she persisted until she finally found a surgeon willing to operate on her in 2022.
To her immense relief, she survived the procedure. But in the process of removing the tumours, the surgeon had to also remove her left kidney. In addition, she suffered nerve damage which left her wheelchair-bound for eight months.
She credits physiotherapy at the Singapore Cancer Society (SCS) for helping her get back on her feet. She is also seeing a dietitian at SCS to manage the weight gain during those months in a wheelchair.
Life Lessons and Paying it Back
Despite everything she has gone through, Mrs Tan-Kuah believes it is important not to think of oneself as a victim.
“Don’t say ‘Why me?’ It doesn’t matter why. It is important to reframe the situation. In fact, I would say cancer actually saved my life,” she reflects.
She explains that prior to her diagnosis, she was a self-professed workaholic who could clock 16-hour days. She was also obese, weighing 120KG despite her 1.53m frame.
That fateful cancer diagnosis was the wake-up call she needed. Mrs Tan-Kuah started watching her weight, doing exercises, going for long walks and eating right. She also handed over the running of her business to her husband and two sons. “I have made a conscious decision to say there’s no point working so hard. Why earn money which you can’t spend?”
She also began thinking about how to use her cancer experience to give back. So in 2016, when she learnt that KK Women’s and Children’s Hospital, National Cancer Centre Singapore and National University Cancer Institute Singapore were setting up the Singapore Sarcoma Support Group, she jumped at the chance to lead it.
The first of its kind in Singapore, the group started with six individuals and has expanded to around 80 members. Mrs Tan-Kuah, who still helms the support group after eight years, proudly shares how it has brought hope to sarcoma patients who initially felt alone and despondent.
Mrs Tan-Kuah is clear that her cancer will never be cured. She is presently under hormonal therapy to control the tumours including one that recently emerged on her right – and remaining – kidney. But she chooses to focus on the positives.
“I will always be a stage 4 cancer survivor-patient. It’s good to know that this fact is exactly what it is,” she says candidly. “This means that every day of survival is considered a bonus for me. I’m not asking for the moon. Each day that I am able to get through being alive and waking up the next day is what I would consider to be the best thing I ever had.”