TLDR: Active, vibrant and full of dreams for her future, “Steffi” was diagnosed with terminal breast cancer at 28. She has chosen not to let that define her life.

Thirty-two-year-old Chuah Siew Lin – “Steffi” to her friends – dreamt of one day being a teacher and a mother.

Like most 30-somethings, she leads an active life – she loves triathlons, teaches swimming in her spare time, and loves playing with her dog.

But four years ago, at just 28, her dreams came crashing down around her – she was abruptly diagnosed with Stage 4 breast cancer, which has a five-year survival rate of 25 percent.

“When the doctor told me, I was, like, “Nah. You’re kidding!?” she recalls.

“So, I took my report to (another) doctor at another hospital. And the news really hit me hard this time. 

“Not just me, but my family as well.

“But I grew to accept it and now I am slightly at peace. But I’m not quite there yet.”

Stage 4 breast cancer is when the cancer has spread beyond the breast tissue and local lymph nodes into other areas of the body.

In Steffi’s case, it has spread to her spine, her pelvis, collarbone and her ribs.

‘Nothing to worry about,’ I thought. How wrong I was

It all began with something as seemingly as innocuous as a leaking nipple – not at all unusual for a woman who spends so much time in the heavily chlorinated water of a swimming pool.

“Because I was training for a swimming event, I thought it was just a normal infection,” she says.

 “But it didn’t get better after the event. So I saw a doctor and had day surgery to seal off the nipple so that it wouldn’t keep bleeding.”

The doctor took a biopsy during the simple procedure – and it revealed a Stage 0 abnormality.

Stage 0, also known a Ductal Carcinoma in Situ, is where abnormal cells are found inside the breast milk duct. It is considered precancerous. And it is a strong indicator of a higher risk of worse things to come.

“So at that point, I was, like, ‘oh, okay. I’m not sure what’s this,” and I didn’t really give it much thought,’ says Steffi.

During a follow-up, her doctor recommended a mammogram – basically a very uncomfortable procedure where your breast is squeezed between two cold steel plates for an x-ray.

That found a lot of calcifications, which look like little white dots. While that can be normal, the danger sign was her inverted  nipple.

The doctors advised a mastectomy to remove her left breast, which she did.

At this stage, the diagnosis was still Stage 0.

Angelina Jolie’s controversial decision inspired others

Some women, like actress Angelina Jolie, who know they have a higher risk of breast cancer choose a voluntary mastectomy.

Jolie, then 37, chose to have both breasts removed in 2013 before any sign of cancer, because of her genetic history.

“My mother fought cancer for almost a decade and died at 56,” she wrote in a heartfelt piece in the New York Times at the time explaining her controversial decision and urging other women to be aware.

“She held out long enough to meet the first of her grandchildren and to hold them in her arms. But my other children will never have the chance to know her and experience how loving and gracious she was.

“We often speak of ‘Mommy’s Mommy,’ and I find myself trying to explain the illness that took her away from us. They have asked if the same could happen to me. I have always told them not to worry, but the truth is I carry a ‘faulty’ gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.

“My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.

“Only a fraction of breast cancers result from an inherited gene mutation. Those with a defect in BRCA1 have a 65 percent risk of getting it, on average,” she wrote.

“Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy. 

“I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex.

 “But I am writing about it now because I hope that other women can benefit from my experience. 

“Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. 

“But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.”

Her decision made headlines around the world led to what is now known in medical circles as “The Anglina Jolie Effect,” that encouraged countless women to take action.

A new lump. And devastating news

After her mastectomy, Steffi noticed a lump had grown back. More tests showed the cancer had spread.

“Stage 0 had very quickly become Stage 4. I was diagnosed with metastatic breast cancer – basically, the cancer had spread to my spine, my pelvis, and my collarbone, and a bit on my ribs,” she says.

“(But) I caught this at an early stage by sheer luck. 

“My objective right now is to beat the statistics and to be able to live longer than that.

While it’s rare, there have been cases of women surviving with Stage 4 longer than a decade.

“That (rate) is very low,” she says. “But there has not been much research on younger people with Stage 4, especially metastatic breast cancer. So it’s really hard to tell.”

Breast cancer in women Steffi’s age is extremely rare – only four percent of women diagnosed with breast cancer in the US are under 40.

But it is more aggressive in young women and the survival rate is much lower than for women over 40.

Statistics are also a bit of a moveable feast. Each case is different. Each country as different healthcare systems and screening programs. And rates can vary dramatically by age, ethnicity, and lifestyle.

And the age breakdowns are changing, too. For decades, they were divided by under- and over-55. That is changing with growing rates among women under 55.

Robust campaigns in countries such as Singapore to encourage women to get checked younger and more often also mean more cases get caught ear earlier and reported more accurately.

Singapore has one of the highest breast cancer rates in Asia, generally consistent across Chinese, Malay, and Indian women, at 54.9 per 100,000.

The National Institute of Health attributes this to Singapore’s more Western lifestyle and higher screening rates.

Life Happens

Steffi knows all about the statistics. But life is for the living.

“’I’m just taking one step at a time,” she says.

“I really love kids, but I guess (having) kids is out of the question right now because you can’t have kids when you’re going through this treatment.

“And I don’t really have big dreams of, like, having a house of my own or having a big car.

“But I guess being the first among my friends and family, hopefully, them sharing my story will promote awareness.

“I don’t want people to feel sorry for me. It was hard to tell my friends and they often said, “I’m sorry. I’m sorry that you have this. I’m sorry that you’re going through this’.”

A tip Steffi, and a lot of other cancer survivors pass on: If someone you know and love tells you they have cancer, just listen. Let them know you’re there for them.

Say things like “I’m always glad to bring you to the hospital.” And, better still, stay there with them during their treatment.

Just be honest, quiet, and be there. The worst thing you can say is “Get well soon.” Or ignore it.

Small things make a difference

Steffi’s attitude to life has changed.

“What I can do right now is to really make peace by taking just one step at a time, one day at a time,” she says.

“And that can be as small as just waking up and going to work. Doing the simplest things. 

“I started by forcing myself to sign up for a swimming group. They have very disciplined training every single day. Having to do that just gives me a little bit more peace.

“And I give less priority to work. Work can’t be your whole life. I mean, even if you resign, there’s always someone else who can replace you. That’s the reality of a rat-race world.”

While she loves her job and is committed to doing the best she can, Steffi’s priorities have changed.

“When it comes to my health, I will just prioritise that, which is as simple as just visiting the hospital and taking a day off if I really need to,” she says.

It’s OK to be ‘selfish’

She has also learned to be kind to herself, if in a rather odd way, which is actually more about acceptance and – in its own way – courage.

I sometimes feel that I deserve all the privileges I can get because I’m gonna die soon, so I’m going to do whatever I want,” she explains.

 “So in a way that I feel like basically, I deserve all the attention that I can get, It’s like … I’m a privileged bitch. And entitled. Yes, the word is entitled.”

She gives the example of fighting for a seat on a crowded LRT.

“Inside my heart, I’m thinking ‘You don’t deserve to sit. You’re not even having cancer. You stand, lah. I deserve to sit ‘cause I’m gonna die soon.”

“It’s not really healthy to have this kind of mindset. I am aware of that. But I just can’t help myself.

“I’m still alive, but I can’t move like everyone else. If you asked me to squat on the floor like anyone else, I can’t do it. Yet even the old aunties can do it.”

A Beautiful Life

Despite what life has dealt her, Stefi is grateful.

“I always believe that I should live my days like I’m going to die. So I have lived by that philosophy so strongly even until now and even before I was diagnosed with cancer.

“So it doesn’t change much for me because I have lived through my years beautifully and meaningfully for myself and it’s a bit sad that other people can’t say the same thing.

“When I hear friends, people close to me who have regrets at not fulfilling what they wanted to do, I see it as a bit of time wasted on their end.

“From my end, I have always taken my time really seriously, even when I was very young. Time is really precious, so, whatever seconds and minutes I have, I really make the most of it.

“It is like a living memory.”

While some dreams of her dreams were lost, Steffi has plenty of new ones. And they are just as big.

“What do I want to do before I die? Definitely, I want to compete in an Iron Man marathon, hopefully before I’m 35. And at the top of my list is definitely climbing Mount Fuji.

“I don’t want to leave anything behind. But if I do, it would be stories about people in my life.”

She also wants to write a book about the people who have enriched her life and made it what it is.

“I want to call it  ‘A Hundred People Who Made Me for Me.’

“I want to commemorate conversations which were very meaningful to me. It’s really, really a lot of work. Probably, I’ll start it one day. But that day is not so soon yet.”

Again like other survivors, she says:

“It takes up a lot of your time and affects you a lot and your relationship with other people as well. But it’s not your core identity. 

“What you’re going through makes you just a little bit different from other people. But it’s not the whole story of your life. It’s just one chapter.”

Steffi’s story shows life can change in a moment, and we may not even know that at the time.

But when Life happens to you, you have the power to choose how to deal with it. Your choice is the most important weapon you have.

Danger Signs to Watch Out For

• A lump in the breast or armpits
• Changes in the shape or size of the nipple, of one or both breasts
• Nipple discharge (In some cases, this may contain blood)
• Visible veins on the breasts
• Dimpling of the skin of the breasts
• Rashes on or around the nipple
• Pain in the vagina
• Unexplained weight loss
• While rare, breast cancer also occurs in men

Breast Cancer Resources in Singapore and Malaysia

• HealthHub Singapore. A digital platform developed by the Ministry of Health and the Health Promotion Board.
• Reach to Recovery: a breast cancer support group
• National University Cancer Institute Singapore: Breast cancer support group
• Breast Cancer support group (Malaysia)
• Breast Cancer Foundation (Malaysia)
• National University Cancer Institute Singapore – Information

Wise Steps

• Don’t wait. If anything on your body worries you, even a little, get it checked out immediately
• Be mindful if you know someone with cancer. Offer practical help – go to the hospital with them, babysit their kids – not platitudes
• Be patient if a friend or a family member has cancer. They will not always be in a good mood and will sometimes feel entitled. Let them be.