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The Big Read: For young adults with cancer, battling an ‘old person’s disease’ is a lonely journey

SINGAPORE — The aspiring chef was barely 18 when her world fell apart after being diagnosed with Stage 2 Hodgkin’s Lymphoma, a type of cancer that affects the body’s germ-fighting immune system, in 2015.

INCREASE IN CANCER DIAGNOSIS OF YOUNGER ADULTS GLOBALLY

Recent studies analysing cancer data in the United States and other industrialised countries have indicated a rise in cases of cancer among people under 50 years old.

In one study which analysed more than 500,000 people in the US, cancers diagnosed in patients under 50 increased by an average of 0.28 per cent each year from 2010 to 2019.

The same study, published in the journal JAMA Network Open, also showed a significant rise in cancer diagnosed in those aged 30 to 40 years old, and in females.

Dr Daniel Huang, who works at National University Hospital’s division of gastroenterology and hepatology and was also the principal investigator of the study, told TODAY that a possible reason for those findings is a higher prevalence of obesity and alcohol consumption in the US.

Singapore, he said, “does have a rising prevalence of obesity, and it will be important to continue monitoring trends in the age of cancer diagnosis”.

Indeed, the overall incidence of cancer diagnoses in Singapore has also increased over the past decade, based on data from the Singapore Cancer Registry’s Annual Report 2021.

In response to TODAY’s queries, a MOH spokesman said that between 1988-1992 and 2018-2021, the age-specific incidence rate of cancer has risen more rapidly among the younger age groups aged below 40 years, compared to the older age groups.

This is in line with global trends that have been reported recently.

The spokesman added that while cancer can occur at any age, it is still more common in older people.

“Over the past three decades, the age-specific incidence of cancer among older individuals was significantly higher than that among younger persons.

“In 2017-2021, about 67 per cent of cancer diagnoses were among patients aged 60 years and above, while less than 6 per cent were among patients aged below 40 years.”

Based on TODAY’s calculations, the number of cancer incidences for those under 49 years old from the period of 2008 to 2012 compared to the period of 2017 to 2021 increased from 11,416 to 12,600.

Local oncologists have also observed a rise in younger adult patients seeking treatment in their clinics.

Dr Samuel Ow, a senior consultant from the department of haematology-oncology at the National University Cancer Institute, said that age-specific incidences of certain types of cancers have increased among the young — particularly breast cancer, thyroid cancer and lymphomas.

Age-specific incidence rates refer to the number of new cancer cases measured by the population at risk for that age group. 

Dr Angela Pang, a senior medical oncologist at OncoCare Cancer Centre, said she sees many younger adults with cancer in her clinics as she specialises in the treatment of sarcoma, a type of cancer that develops in the bone and soft tissues, which is more common among those in that demographic. 

Nevertheless, many young patients believe that cancer is a disease that usually befalls those who are older, which makes it even harder for them to come to terms with the diagnosis. 

A LACK OF A PROPER SUPPORT NETWORK

For these young cancer patients, having the support of close friends is crucial, but this is not always possible.

The need to undergo urgent, intensive treatments means that their daily routines are disrupted, with much of their time spent physically recuperating from surgery, radiotherapy or chemotherapy.

Ms Jamie Ng Jin, a 25-year-old fashion designer who was diagnosed with Stage 2 breast cancer last year, said that this affected the type of conversations she could have with her friends. 

“Whenever you update them, it’s about your treatment that they can’t relate to. At that point, you will feel a bit lonely,” she said, adding that they no longer had as many common topics to speak about together. 

Thus, many turn to the Internet to find not just medical information, but also comfort and reassurance in the form of a community that could understand them.

Ms Faridah and Ms Ng both told TODAY that they had gone online to search for video blogs of other people’s cancer experiences so they could prepare themselves mentally for the arduous, impending journey.

However, they could not find much of such content made by Singaporeans.

Similarly, when Ms Jill Alphonso, 44, was first confronted with the possibility of having to undergo a unilateral mastectomy to remove a cancerous tumour in her left breast, she wanted to find out what her body might look like post-operation.

“If I have a mastectomy, that’s a body part being removed. How am I going to feel? How is the scar going to look like? What is the healing process?” she said.

As it turned out, Ms Alphonso said that it was difficult to find such pictures of women with their faces and their mastectomy scars — especially women in Asia.

That was when the former journalist decided, upon completing her operation in January this year, to blaze a trail for others by documenting her recovery journey both in words and in pictures.

“I started taking pictures of myself post-op, and I saw something good there. I saw myself in a different light. I saw a person with a mastectomy scar who was still positive.

“It just sparked this thought that, if other women can clearly see that somebody has come through surgery, has survived and can smile and still be happy, complete and whole in their own body and mind… then surely that’s going to help somebody.”

Ms Alphonso, who currently works as an editor at a local bank, has since written several articles documenting her journey and regularly posts self-portraits of body positivity on her social media accounts.

Ms Ng also started her own “Cancer Diary” series on YouTube where she talked about the events leading up to her diagnosis, the process of chemotherapy and various other procedures she underwent. The videos have since amassed several thousand views each. 

Ultimately, their motivations for publicly documenting their battle against cancer stem from a desire to connect with others who are experiencing similar struggles. 

CHALLENGES DIFFER FOR VARIOUS AGE GROUPS

When Ms Arathi Devandran was diagnosed with Stage 2A breast cancer last year at the age of 31, she too sought a community with which she could share her troubles and be understood.

“I tried finding a community,” she said, “but my surgeons told me that there wasn’t anyone because I was too young, and the support groups that they did have were mostly (for) older people.” 

Ms Devandran believes that it is important for cancer patients to have conversations with people who are in the same age range, as the struggles and priorities in their lives can differ very wildly.

“If you’re unmarried, you will probably have a lot of thoughts like ‘am I going to die alone?’ And if you’re married, it can put a huge strain on the relationship,” Ms Devandran said.

“Then there’s all these questions about family — how are we going to have a family, and what happens if we do have a family and it (the cancer) comes back?

“You can’t talk about it to someone who’s in their 50s — who’s already had kids, who’s been married for about 20, 30 years. They’re just at a different life stage.”

That was the exact situation that Ms Tracy Hoo found herself in back in 2016, when she attended a support group organised by the Breast Cancer Foundation a few months after she was diagnosed with Stage 2 breast cancer.

At the meeting, Ms Hoo recalled introducing herself as a 29-year-old and receiving looks of shock and surprise from her older peers. She added that she “could not relate at all” to the problems that participants brought up during the meeting, like looking after their grandchildren while seeking treatment.

“When I was first diagnosed, all I wanted was someone to journey together with me, which I didn’t have,” said Ms Hoo, who now works as a human resource manager at an online job portal. 

“I just couldn’t relate, and it made me even sadder and more depressed because then it made me feel like — ‘why am I the youngest one, why am I having this thing?’” 

SOUND MENTAL HEALTH, BETTER OVERALL SURVIVAL 

Nearly 50 per cent of women diagnosed with breast cancer experience various forms of psychological distress, said Dr Esther Chuwa, a senior consultant at Solis Breast Care & Surgery Centre.

This can range from anxiety to distress, depression, cognitive impairment and sexual dysfunction.  

Having experienced such mental pressures themselves, Ms Hoo, Ms Devandran and Ms Alphonso all shared with TODAY their desire to do something to help those who often feel alone in their battle against cancer.

Wanting to provide young cancer fighters and survivors with an avenue to reconcile their emotions in each other’s company, Ms Hoo reached out to the Breast Cancer Foundation in 2018 to start a support group specifically for women under 45.

The Young Women’s Support Group, as it is known today, holds an in-person meeting on every second Saturday of each month.

Its closed group chat currently comprises about 180 existing breast cancer survivors who regularly pose and answer each others’ questions, although usually under 10 people show up for physical meetings at the Breast Cancer Centre in Sin Ming, said Ms Hoo. There, the women share their experiences and discuss matters like managing the financial cost of treatments, caring for their young children and supporting their elderly parents, as well as other health and work-related challenges. 

Ms Alphonso also started a small support group for young women in March this year after several people reached out to her on social media.

The lack of inter-patient peer support is something that cancer specialists and institutions are becoming increasingly aware of as well.

Dr Poon Yi Ling Eileen, a consultant at the National Cancer Centre Singapore’s (NCCS) division of medical oncology, said: “Many young adults with cancer are keen to form a connection with other cancer patients, particularly if their cancer type is more uncommon.”

Recognising that demand, the NCCS initiated in 2018 an adolescent and young adult oncology support group that allows young patients “to connect without the fear of stigmatisation”.

“Members can also participate in various activities including brush calligraphy classes, leather crafting workshops, and outings to watch dance performances, which can help to bring a sense of normalcy to patients’ lives and remind them of their sense of identity,” Dr Poon said.

The NCCS also introduced a mobile application called AYA Bytes in April this year, which provides young cancer patients with specially curated health information, and a feature that allows them to track their moods and symptoms.

Other specific cancer support groups targeted at young patients include the Sarcoma Support Group, Lymphoma Support Group and Acute Leukaemia Warriors Support Group at the National University Cancer Institute Singapore (NCIS) — all of which are open to young adult cancer patients or survivors regardless of where they receive treatment. 

Dr Chuwa of Solis Breast Care & Surgery Centre said it is important for cancer patients not to neglect their emotional well-being as studies have indicated a correlation between a positive psychological mindset and better overall survival.

“While the methodology of these studies have been criticised to be highly variable, (the correlation) comes as no surprise,” she said.

“An improved psychological and mental state directly impacts compliance with treatments, healthy living, and positive health seeking behaviour through adherence to follow-up checks with their doctors and an overall improved quality of life.” 

INSURANCE HELPS, BUT EXTRA COSTS CAN BE A BURDEN

Physical and mental challenges aside, cost concerns can also weigh heavily on young patients who do not have as much savings as their older counterparts.

The Singapore Government provides various schemes and subsidies to help alleviate the financial burden of citizens and permanent residents who are unable to afford cancer treatments, but patients still have to bear some of the costs.

While Ms Ng had bought insurance that could cover her costly chemotherapy and hospitalisation fees, she has had to fork out several thousand dollars for other procedures like egg freezing and risk reduction surgeries.

Her monthly consultations and check-ups with various doctors used to add up to a few hundred dollars per month, although that figure has now dropped to less than a hundred. 

For 32-year-old Mr Tay Zhi Zhong, the Singapore Armed Forces had covered the bulk of his medical fees as he was diagnosed with Stage 3 nose cancer while he was a full-time national serviceman in 2011. 

However, he still had to tap his parents’ MediSave accounts to pay for his consultation fees after completing his service for a short period of time as he did not have enough savings then. 

According to a spokesperson from the NCCS, the cost of cancer treatments such as chemotherapy and radiotherapy can vary greatly, depending on the type and stage of cancer.

For Ms Hoo, each chemotherapy session she attended in 2016 to treat her breast cancer cost more than S$2,000, and her mastectomy and breast reconstruction surgery cost about S$100,000. 

All in all, she estimated that the total bills incurred from her initial diagnosis to recovery — comprising blood tests, ultrasounds, lab scans and consultations among other things — added up to about S$200,000. 

These fees were eventually covered by her insurance company, though Ms Hoo had to first borrow money from her family members as well as banks in order to pay for them first. 

WHAT CAUSES CANCER IN YOUNG ADULTS?

In Singapore, the proportion of younger adults diagnosed with cancer has been dropping consistently since the Singapore Cancer Registry started collecting data in 1968.

From 1968 to 1972, those aged 29 and under accounted for 7.2 per cent of all patients diagnosed with cancer. The figure dropped to 2.1 per cent for the period of 2017 to 2021.

Singapore’s median age at cancer diagnosis therefore increased from 58.7 to 66.4 years old.

In the period of 2017 to 2021, for females across all ages diagnosed with breast cancer, thyroid cancer and lymphoid neoplasms — which includes lymphoma — the survival rate five years following diagnosis stood at 82.5, 88.8 and 60.9 per cent respectively. 

For males, three out of the 10 most frequent incident cancers were prostate cancer, colon and rectum cancer and lung cancer — and the survival rate five years following diagnosis of these cancers were 89.0, 63.2 and 20.3 per cent respectively. 

Overall, the five-year age-standardised relative survival rate for all cancers — referring to the average rate of survival of cancer patients of all ages up to five years upon diagnosis — had improved significantly from the period of 1973-1977 to 2017-2021.

It moved up from 13.2 per cent to 55.4 per cent, and 28 per cent to 63 percent for males and females respectively. 

The registry noted that females were observed to consistently have a higher survival rate compared to males throughout this period.

With statistics from the registry showing a rise in overall cancer incidences every five-year period and worldwide studies indicating a concerning trend among younger adults, medical professionals warn that cancer should not be perceived to be an old person’s disease.

So, what causes cancer, and what can young adults do to minimise their chances of getting it?

Dr Pang of OncoCare said that smoking and excessive alcohol consumption increase the risk of developing cancers uniformly in most countries, including Singapore.

Smoking causes about 20 per cent of all cancer deaths, while the combination of smoking and alcohol consumption increases the risk of oesophageal cancer by close to 40 times.

Regular exercise, alongside wise dietary choices and the maintenance of a healthy body mass index, allows one to reduce their lifetime risk of developing cancers, Dr Pang added.

Changes in lifestyle — such as an unhealthy diet, a lack of physical activity and exposure to certain environmental toxins — could also be contributing to the increase in incidence rates in cancer among young adults globally, said Dr Tanujaa Rajasekaran, a senior consultant and medical oncologist at Parkway Cancer Centre. 

“Over the years, with urbanisation and economic growth, there’s been an increase in the consumption of processed foods, sugary beverages, and red meat, all of which have been linked to a higher risk of certain cancers,” she added.

When it comes to the use of vapes, medical experts are in consensus that there is no concrete evidence linking them to cancer due to the e-cigarettes being fairly “new” — though they still discourage vaping as it poses several health risks like lung infections to the user.

Citing the National Population Health Survey 2019, the MOH spokesman said that while knowledge of screening for breast, cervical and colorectal cancers is high, participation rates for cancer screening can be improved.

The spokesman added that cancer screening is heavily subsidised under the national screening programme Screen For Life, while nationally recommended screenings — including those for breast, cervical and colorectal cancers — are fully subsidised for eligible enrolees under the Government’s Healthier SG initiative. 

The ministry also recommended Singaporeans to discuss with their doctors regarding the need for cancer screening based on their individual risk profile.

RIGHT SUPPORT GOES A LONG WAY 

Nearly nine years after her diagnosis, Ms Faridah has found a new mission in life — to build a career around helping others, especially young people.

Once an aspiring chef, the now 26-year-old woman is currently a branch manager trainee at a government agency, while studying part-time for a post-graduate diploma in counselling psychology at the College of Allied Educators.

She told TODAY that she was frustrated at the “standard” advice that her counsellors had offered her while she was undergoing cancer treatment — to take walks in the park and to just do her best — and that she felt there was little attempt to understand her struggles.

“So I decided, oh my god, I’m just going to be a counsellor myself then,” she told TODAY in an interview at the 22nd floor of the new NCCS building on Hospital Boulevard.

While she had initially meant it as a joke, a friend encouraged her to give counselling a shot, and things eventually fell into place.

Now, Ms Faridah wants to be the counsellor to teenagers and young adults, the professional confidant whom she felt she should have had at her lowest point in life.

“You really need support… the right kind of support,” said Ms Faridah, who is currently in remission.

“If not, I don’t think a cancer patient can make it, especially at that age.”

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