Auckland woman Sarah Cheung was diagnosed with differentiated retroperitoneal liposarcoma in 2021 at the age of 43. Photo / Supplied
A cancer diagnosis changes everything – but for those with a rare type of cancer, there are even more unknowns.
Aucklander Sarah Cheung was diagnosed with differentiated retroperitoneal liposarcoma in 2021 at the age of 43, after experiencing severe back pain that prompted her to see her GP.
Sarcoma is a rare type of cancer with many different subtypes that originate from bone, cartilage or soft tissues like fat and muscle.
“It basically occurred outside my kidney and then grew into a tumour in my kidney,” Cheung says.
“I had a nephrectomy of my right kidney back in 2021, along with an IVC [inferior vena cava] reconstruction at that time.”
Cheung, who shared the story of her initial diagnosis with the Herald in 2023, now reveals that her cancer returned in December 2024 after more than three years NED (no evidence of disease).
“This year has been quite a rollercoaster. I’d just passed my 3-year anniversary in August and even went travelling after that, and I was completely fine,” she shares.
“At the beginning of December, I started having bowel issues. I would think I ate something bad, and then I’d be vomiting, have diarrhea – my whole bowel didn’t feel right. I had my six-monthly scan on December 7 and that came back not so good, and that’s when I had my first recurrence."
Cheung underwent a full Whipple procedure – major abdominal surgery – a bowel reconstruction, and another IV reconstruction. She spent two months recovering in hospital, and says she’s only recently started feeling better.
“The mental toll of all of that was hard. Unfortunately, there’s some residue tumour on my IVC which probably won’t be resectable [removable by surgery], so at the moment, I’m just under surveillance.”
If that tumour does grow or shift, Cheung’s only option will be chemotherapy, which will control rather than cure her cancer.
“It’s kind of like I’ve got a ticking time bomb in my body, but life goes on and you just take it one day at a time.
“We can’t choose the cancer we have, but with a rare cancer, it just makes it that much more difficult. That’s why research and awareness is so important, because we need to be heard as well.”
It’s why she joined the Australia and New Zealand Sarcoma Association (ANZSA) consumer advisory panel after her initial treatment and diagnosis.
“It’s lovely to get that New Zealand perspective, because I’ve been sitting in on lots of research meetings, and so many of those are Australia-focused – they talk about clinical trials and things like that, that are only really available for people in Australia or elsewhere around the world.
“New Zealand probably gets very little of it, if at all. So it’s just having that presence and making sure that they include us as well – that’s really important."
Cheung says she’s lucky to be living in Auckland, home to the North Island Sarcoma Service at Auckland City Hospital. The only other centre in the country is at Christchurch Hospital, covering the South Island.
“We want to make sure that all sarcoma patients are looked after, even if they live in rural New Zealand, but without further funding or more funding, that’s not possible ... because with sarcoma there’s limited treatment avenues, I think the focus really needs to be on research and opening up more clinical trials for Kiwi patients, especially.”
Cheung says it’s also important to foster community among others walking the same path. Being diagnosed with a rare cancer can make you feel “quite alone”.
“I think if I hadn’t reached out initially, I probably wouldn’t have managed as well as I have until today. So don’t be afraid to reach out, because there is a community out there, even though we’re quite small, who care and who really are willing to share and be there for each other.”
Cheung’s hope for others in her position is that they’re “not afraid to ask questions”.
“I was lucky because the GP who looked after me at the time knew something about cancer. But some GPs may never have come across a sarcoma case, and they may think it’s something else, which could delay diagnosis.
“It all comes back to the gut feeling. If you don’t feel right, go and get it checked out. It’s better to know what it is than to wait around and think it’s nothing and then have something.”
Cheung says her Christian faith, mindfulness and taking care of her mental health help her stay positive.
“Don’t let the fear of the end ruin the joy of today. That’s what I’m still reminding myself of every day.”
Medical oncologist Dr Joanna Connor says that when it comes to sarcoma, an early diagnosis is key to improving outcomes for patients – though research shows it is misdiagnosed in nearly 30% of cases.
Connor, who specialises in sarcoma and breast cancers, is the New Zealand director for the ANZSA and is on the board of the Sarcoma Foundation New Zealand as one of its co-founders.
“Sarcomas are rare – about 1% of all adult cancer diagnoses. The difficulty with sarcoma is that there are over 100 different types," she tells the Herald.
“[It’s] a cancer that starts in the connective tissues of the body, so that can be fat, muscle, bone, and they can occur in any place in the body. That leads to difficulties because of the rarity and the presentation. It sometimes takes a long time for people to get correctly diagnosed.”
Surgery is usually the first line of treatment for sarcoma, while some types will require radiation or chemotherapy.
“One of the difficulties of rare cancers is the awareness and then the funding that comes with that for research to improve outcomes,” she says.
“Sarcoma outcomes have remained quite static over the last 10 years, whereas more common cancers have had improvements in their survival rates over time.
“So this is where ANZSA comes in – campaigning and promoting research is key to improve survival, and participation in clinical trials for rare tumours.
“Internationally, physicians treating sarcoma agree that the best treatment is usually within a clinical trial where possible, so we always try to facilitate that where we can, but that needs funding and research money.”
July is Sarcoma Awareness Month, during which the ANZSA is calling on Kiwis to take part in The Great Sarcoma Plankathon to help raise funds for research. You can find out more, register to take part or donate here.
“If that resonates with people and people want to get involved or support, I think that would be amazing.”