Kiwi mum’s rare sarcoma diagnosis after dismissing symptoms as ‘women’s health issues’

Sarah Cheung started experiencing severe back pain in 2021, which turned out to be a telltale sign of cancer. Photos / Supplied

When Sarah Cheung started experiencing pain in her lower back, she initially dismissed it as a possible “women’s health” issue.

Back pain is something most of us experience at some point in our lives, and will shrug off as nothing to worry about. But when it became more frequent, the 43-year-old Auckland woman decided to see her doctor in case it was something more - and received a life-changing diagnosis.

“It wasn’t there all the time, but it was painful enough to wake me up in the middle of the night,” the mum of one tells the Herald.

Sarah Cheung started experiencing severe back pain, which turned out to be a cancer symptom. Photo / Supplied

Her GP asked for blood tests, which revealed inflammatory markers at a level over 100 - the normal level is under 1. From there Cheung went straight to Auckland Hospital for further tests and scans.

An ultrasound revealed a golf ball-sized lump in one of her kidneys.

It took almost a month before biopsy results confirmed that the lump was retroperitoneal liposarcoma. Sarcoma is a type of cancer that originates from bone, cartilage or soft tissues like fat and muscle, and is often misdiagnosed as benign, or as growing pains.

Cheung recalls that she “couldn’t believe it” when she heard the diagnosis, as she never thought it could be cancer. She didn’t even know what sarcoma was at the time.

“It was extremely scary ... having a rare cancer is incredibly frightening because it’s not like common cancers where there is a lot of information, so it’s more difficult to get a very clear idea of what to expect.”

Cheung underwent 28 rounds of radiation therapy before open surgery to remove her right kidney and repair part of her vena cava, which is the largest vein in the body that carries blood to the heart. But throughout her treatment, she developed severe anaemia, constant fevers and pain - symptoms that resulted in her surgery being brought forward.

Cheung had her operation the same day Auckland went into lockdown on August 17, 2021, which she’s now “extremely grateful for”.

Cheung developed severe anaemia during her treatment. Photo / Supplied

Nearly two years later, Cheung is still NED - meaning she has no evidence of the disease. Her cancer has a high chance of recurrence, so she continues to get CT scans of her chest, abdomen and pelvis every three months.

“Thankfully, so far, they have been all clear. I think it’s hard for anyone who has had an experience with cancer to say they have fully recovered. I’m mentally prepared for a sarcoma recurrence, but I wouldn’t let that ruin the life I am able to live now.”

Now, Cheung reflects that getting cancer “definitely changed me for the better”.

“I did go through some pretty dark times, especially when I was first diagnosed,” she admits - but adds that it taught her “what really mattered in life”.

“I gained so much more from the experience ... my Christian faith was renewed and as one of my good friends always says, ‘carpe diem’ - and I really learnt to live in the moment.”

But Cheung wasn’t just grateful to have survived cancer - her experience inspired her to help others who might be going through something similar.

Last year she joined the Australia and New Zealand Sarcoma Association (ANZSA) consumer advisory panel, something she wouldn’t have been able to do without her experience of the disease.

Sarah Cheung was 43 when she was diagnosed with retroperitoneal liposarcoma. Photo / Supplied

Cheung wants to advocate for other Kiwis diagnosed with sarcoma, because when it comes to the disease, we can be at a disadvantage in New Zealand.

“I think when we are talking about rare cancers, our small population works against us,” she notes, adding that many GPs won’t see a case of sarcoma during their working career.

Sarcoma has more than 80 different subtypes and can occur anywhere in the body, regardless of a person’s age. That means there’s not enough research being done about all the different types, and treatment plans for a lot of these cancers rely on clinical trials. It also receives much less funding than other cancers, according to ANZSA.

“There needs to be more clarity and equity around the treatment plans for sarcoma patients so that anyone in New Zealand with sarcoma is getting the same standard of treatment, no matter which city they live in,” Cheung says.

And it’s not just treatment that’s needed, but ongoing mental health support even for those who have survived cancers like sarcoma.

“Mental health support is so important for someone who is putting up a fight against sarcoma. Often the psychological effects of cancer will linger long after the physical ones have subsided, so it is important to raise awareness of the various support groups that are available.

“As much as my friends and family supported me through this journey, I found it most helpful and comforting when I was talking to other cancer survivors or people who have had my type of sarcoma before. There are some things that only those who have been through this particular journey will understand.”

Cheung urges others to get checked if they have any concerns about their health and worry they could have cancer.

“Generally, the earlier cancer is picked up, the better the prognosis,” she shares.

“It takes a lot of courage to face something as big as cancer, but the more you know, the easier it is to deal with it in the long run. When it comes to our health, we are our own best advocate.

“If you know something isn’t right, go and get a second opinion or be more proactive and push for what you need.”

Bethany Reitsma is an Auckland-based journalist covering lifestyle and entertainment stories who joined the Herald in 2019. She specialises in lifestyle human interest stories, foodie hacks (what can’t you air fry?!) and anything even remotely related to coffee.