You've read the stories and watched the videos - inspiring young cancer patients in the prime of their lives who have had to overcome a devastating cancer diagnosis.
Take the story of a young sales professional, Chen Xiao Cui. In 2019, when she was 30 years old, Xiao Cui got a chest X-ray. Alarmingly, results showed a shadow in her lungs. Further investigations indicated that the shadow was a harmless nodule but found a gastrointestinal stromal tumour in her stomach. Her tumour was a form of sarcoma that had advanced to stage 4 and affected her liver and stomach.
“At the time, my beautiful son was only a year and half old. I had a good and stable job that I loved," said Xiao Cui. "When I got the cancer diagnosis, I felt like my world was going to collapse.”
As much as these stories tug on our heartstrings, it is sobering to realise that when cancer strikes individuals at a young age, they face a host of unique challenges.
Adolescent and young adult cancer patients are not likely to be identified as a separate group, particularly in Asia, where information and assistance for them are limited. Gaps in their care are present throughout their cancer journey - starting from diagnosis and a lack of age-appropriate resources, compounded by financial difficulties and disruptions to their education, social lives and careers.
The Adolescent and Young Adult Oncology (AYAO) support group at the National Cancer Centre Singapore (NCCS) is looking to change that.
The Adolescent and Young Adult Oncology support group team pose in 2019 after setting a national steps record to raise awareness for young cancer patients.
Difficulties in diagnosis and life disruptions
Adolescents and young adults diagnosed with cancer face unique challenges that paediatric and older patients do not. Most cancer services, awareness campaigns and resources have traditionally focused on older cancer patients and paediatric patients. This emphasis is a result of paediatric patients having strong advocates in their parents or guardians and because older patients are seen as more likely to be diagnosed with cancer.
Adolescent and young adult patients, aged 16 to 45 years old, are often lost in the mix, which is problematic as they make up a significant and economically viable part of society. From 2015 to 2019, more than 2,600 adolescent and young adult cancer patients were newly diagnosed at NCCS. This figure does not include existing patients or those who have passed.
One of the major challenges adolescent and young adult patients face is delayed diagnosis. Many primary physicians do not expect young patients to have cancer and may dismiss the signs of disease. As a result, these patients can be misdiagnosed or diagnosed late, potentially affecting their outcomes. While there are significant differences in the type of cancers this group may have, we now know that certain cancers, such as sarcomas, lymphomas, breast cancers and germ cell tumours, are more common. To improve timely diagnosis and outcomes, more AYAO-specific training, age-appropriate resources and greater awareness are needed.
A cancer diagnosis at this age comes with significant emotional and social challenges. Adolescents and young adults are supposed to be at the peak of their physical health and go through major life milestones such as finishing school, going to university, starting work and pursuing significant romantic relationships. To do all this while coping with a cancer diagnosis is devastating. It affects a young's person sense of identity, disrupts their life plans and forces them to confront premature mortality.
What does the AYAO support group do?
Knowing that this group of adolescents and young adults needed help, Dr Eileen Poon, a Consultant in NCCS’ Department of Lymphoma and Sarcoma in the Division of Medical Oncology, rose to the challenge. Dr Poon specialises in treating lymphomas, melanomas and sarcomas and quickly bonded with her young patients diagnosed with these aggressive cancers. Seeing their unique needs up close, she decided that a support system was needed to empower young patients to not just live with cancer but to live well.
Dr Eileen Poon shares relevant information at an Adolescent and Young Adult Oncology support group information session (photo taken before the COVID-19 pandemic).
During her treatment, Xiao Cui faced massive life-threatening bleeding due to the sarcoma in her abdomen and needed emergency surgery to remove part of her stomach. Fortunately, the surgery did not affect her ability to eat and digest food. Still, the harrowing experience made her re-think her life goals and plans. Xiao Cui, who is a member of the AYAO support group and Dr Poon’s patient, drew support and got advice from group leaders and members during this time.
Since 2018, the AYAO support group has performed a significant role in complementing the care provided by cancer doctors and surgeons. Young patients diagnosed with cancer at NCCS are referred to the group. A “champion” or “navigator” provides support and information to patients and their caregivers on relevant issues such as fertility, mental health and treatment-related complications.
One of the first in Asia, the AYAO support group provides a safe space for young patients to connect without the fear of stigma. Pre-pandemic, the group organised a number of activities including brush calligraphy classes, leather crafting workshops, coffee appreciation sessions and outings to watch dance performances. The AYAO support group conducted these activities to bring a sense of normalcy to patients’ lives and remind them of their sense of identity.
The AYAO support group have faced challenges since the pandemic reached our shores in 2020. Despite this, activities resumed on virtual platforms, and there has been positive feedback from both patients and their doctors.
“I have noticed that patients are more open sharing about the challenges they face when they are in the support group,” disclosed Dr Poon. “This helps them because they can address what is bothering them and may get useful tips from other patients going through a similar situation. We are constantly looking at ways to improve support for the AYAO group of patients.”
Terrarium-making was among the many activities offered by the Adolescent and Young Adult Oncology support group.
Next steps
The Adolescent and Young Adult Oncology team are not skipping a beat with its plans to serve their patients better. A digital app is already in the works to provide age-appropriate and reliable adolescent and young adult cancer-related information to patients and caregivers. The team also recently wrapped up filming a micro-documentary, supported by a grant from the National Youth Council, to build awareness featuring young cancer patients. A podcast helmed by young adult cancer survivors to address common concerns and taboo topics surrounding AYAO cancer, informally and authentically, is expected to start in the second quarter of 2022.
Additionally, plans are underway to develop a full-fledged complementary service to provide adolescent and young adult oncology patients with holistic and individualised care from the moment they begin their cancer journey at NCCS.
Today, Xiao Cui’s son is four years old, and she is back at work. Her sarcoma is dormant, but she keeps up with her medical appointments and closely monitors her condition. Xiao Cui is aware that she may require more treatment in the future, but she focuses on staying positive and upbeat.
“I am very thankful for my husband and friends for their support,” said Xiao Cui. “It’s because of them that I could adapt to the different changes and maintain a positive mindset as I transitioned from undergoing cancer treatment to returning to normal life.”
Ask your treating oncologist for more information if you're an adolescent or young adult with cancer and you are interested in knowing more about the Adolescent and Young Adult Oncology support group.
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