Dr Lanka Jayasuriya-Dissanayake of the Indira Cancer Trust on fighting breast cancer

The world over, October is marked as Breast Cancer Awareness Month. Breast cancer is a global health concern, affecting millions of women every year. In Sri Lanka, the incidence of breast cancer has been steadily increasing. It is the most prevalent form of cancer and also sees the highest number of fatalities. Early detection plays a crucial role in treating and surviving breast cancer. 

Over the last six years, the Indira Cancer Trust, led by Chairperson Dr. Lanka Jayasuriya-Dissanayake, has championed breast cancer awareness and built an ecosystem that can support cancer patients of all ages by providing holistic support and care. 

This week, The Sunday Morning Brunch sat down with Dr. Lanka at the Indira Cancer Trust’s newly-opened paediatric palliative care centre Suwa Arana for a chat on the significance of breast cancer awareness, dispelling myths, and sharing insights on the organisation’s dedicated efforts to provide holistic care.

Breast cancer in the Sri Lankan context

Breast cancer is the most common cancer among Sri Lankan women. Emphasising the importance of early detection and treatment, Dr Lanka revealed: “Every day, five people are diagnosed with breast cancer in Sri Lanka, and tragically, three of them lose their battle with the disease. These are avoidable deaths if detected early.”

This is the most important thing to remember with breast cancer and even with most other types of cancer: early detection is crucial. 

Brunch also chatted with Dr. Lanka on the myths and misconceptions that can spring up around breast cancer. The most frequent misconception Dr Lanka deals with – and that she believes can often play a part in scaring women away from seeking treatment swiftly – is the notion of impending doom that surrounds cancer diagnosis. 

This can often become a self-fulfilling prophecy, for the longer an examination and diagnosis is put off, the more serious it is likely to become. “Early detection most often leads to a complete cure,” Dr. Lanka stressed. “The survival rate of a person without cancer and one whose cancer is detected in the early stages is essentially the same.”

Other things that can discourage women from seeking help when they notice changes in their bodies include fear of the physical changes due to breast cancer treatment, such as hair loss. But again, this shouldn’t deter women, because modern medical facilities provide solutions like wigs and prostheses to help patients maintain their appearance and self-esteem during treatment.

The Indira Cancer Trust’s Journey

Dr. Lanka heads the Indira Cancer Trust, a non-profit set up in 2023 following the death of her sister Indira Jayasuriya, and she took us through the emotional journey that led to its formation.

“After losing my sister to breast cancer in 2016, my family and I were profoundly impacted by the care and support we received during her last stages in the UK. Witnessing the difference compassionate care made, I decided to leave my job at the World Health Organization to help establish an organisation that could provide similar support to other families.”

Over the past six years, Indira Cancer Trust has developed 23 programmes addressing various aspects of cancer diagnosis, including psychological, financial, and social support. Its mission is to uplift patients and their families mentally, physically, and emotionally. The opening of Sri Lanka’s first dedicated paediatric palliative care centre Suwa Arana in June 2023 marked a significant milestone in its journey.

The Indira Cancer Trust has also been at the forefront of driving breast cancer awareness and support in Sri Lanka. Beyond its work with breast cancer, the organisation focuses on holistic care for cancer patients and their families, from supporting patients with custom-made wigs, and breast prostheses, financial support for those in need to manage travel and medication expenses, to providing emotional support to patients and their families. 

Suwa Arana is a testament to the trust’s commitment to providing comprehensive care. Equipped with 32 family rooms, a rooftop garden, and specialised amenities for recovery, the facility aims to create an ideal healing environment for children and their families. 

“Suwa Arana was designed as a home away from home, ensuring that families can prepare for their child’s passing with the reassurance of easy access to care in case of sudden emergencies,” Dr Lanka said. “The rooms are like hotel suites, and we also have spaces for different healing therapies, from art to music. It’s a place of comfort, compassion, and care.”

Additionally, the facility focused on green and sustainable practices, with features like solar panels, rainwater harvesting, and an abundance of greenery to promote a connection with nature, said Dr Lanka.

The TLC campaign: An extension of tender loving care

As part of its breast cancer awareness efforts, the Indira Cancer Trust promotes the concept of TLC, a global breast cancer awareness campaign that plays on the phrase ‘Tender Loving Care’. Adapted to become ‘Touch, Look, Check,’ TLC is a simple exercise that can save countless women from breast cancer before it advances to become a serious or life-threatening condition. 

Giving us a little more insight into TLC, Dr Lanka explained: “Women often prioritise the well-being of their families over their own. TLC reminds women to prioritise their own health. It stands for Touch, Look, Check and encourages women of all ages to perform monthly self-exams and to know you are normal. Understanding what is normal for you enables you to recognise abnormalities sooner. Self-examinations should be a regular part of every woman’s health routine.”

In a practical sense, TLC translates to:

• Touch: The first step is for individuals to become familiar with their own bodies. Through gentle and regular self-examinations, they can learn to recognise any changes in their breasts.
• Look: Regular inspection of the breasts in front of a mirror is essential. Observing changes in size, shape, or colour is important, and attention should be paid to any dimpling or puckering of the skin.
• Check: If anything unusual is noticed during self-examination or changes in the breasts are observed, seeking medical advice without hesitation is crucial. Early detection continues to be the key to effective treatment.

Importantly, these exams require little effort. They can be done sitting or standing and take only a few minutes. For those women who menstruate regularly, Dr. Lanka explained that this can easily be made part of a monthly routine. For those women who no longer menstruate, it is only a matter of marking a regular date and taking a few minutes to touch, look, and check for any abnormalities. 

Awareness is only half the battle

Despite the simplicity of self-exams and the importance of early detection, Dr Lanka shared that many women did not conduct regular self-exams, and even among the women who did, many put off seeking medical attention when it came to potential illness. This is something the Indira Cancer Trust is looking to change, and why the TLC campaign and encouraging women to take charge of their health is so important. 

Part of this reluctance from women to seek help is partly due to the myths of doom and gloom that surround cancer diagnoses, but Dr Lanka shared that women’s roles as caregivers within Sri Lanka’s cultural and societal context also played an unexpected part.

“In our culture, women are known for their selflessness. They put the needs of their families before their own,” Dr. Lanka said. “When you sit at the family table, the mother serves everyone before herself. The priority for a woman is mostly focused towards family – husband, children, and parents – and their own health becomes secondary. Many women wait for their children to graduate, or for other life events to finish before addressing their health concerns. Urgency is not always felt, and this delay can be detrimental.” 

Additionally, breast cancer, interestingly, tends to affect women with young families and when a mother falls ill, it impacts the entire household, compounding the reluctance to seek medical attention. Thus, it becomes crucial for women to prioritise their health and regularly perform self-examinations.

That said, breast cancer can affect women of all ages, so, all women should regularly examine themselves. Breast cancer also needs to become much more than simply a women’s issue, Dr. Lanka explained, especially within our cultural and social context. 

All men have an important part to play in promoting awareness, even if it is limited to only the women in their lives. “Each one of you has a female in your life, starting from your mother,” she said of the role men can play. “Encourage them to perform regular self-exams and visit a doctor if anything abnormal is detected.”

The film ‘Asu’: A story of courage and hope

The Indira Cancer Trust and Dr Lanka’s journey as an advocate and resource for those suffering from cancer all begins with her sister Indira Jayasuriya, who battled breast cancer twice and was pregnant with her second child when she received her second diagnosis, refusing treatment in order to deliver her child. She passed away in November 2016 following a lengthy battle, inspiring the creation of the trust. 

“My sister’s story was a remarkable one,” Dr. Lanka said. “She approached her illness with a fighting spirit, never giving up. Her positive spirit lives on, inspiring countless others.”

This past week (11) saw the Sri Lankan release of ‘Asu,’ a film by the renowned director Sanjeewa Pushpakumara which is based on the true story of Indira’s battle with breast cancer – a touching portrayal of the love and resilience of a mother towards her child, even in the face of a life-threatening illness. The film stars Udari Warnakulasooriya, Shyam Fernando, and Dinara Punchihewa. 

The film previously premiered at the 34th Tokyo International Film Festival in October 2021 and was also screened at the Asian World Film Festival in Los Angeles and the Asian Film Festival in Barcelona in 2022. The Sri Lankan premiere took place on 11 October at PVR Cinemas. 

The film hopes to encourage people to witness the beauty of a story that has inspired so many and helped found the Indira Cancer Trust. It not only hopes to inspire patients but also aims to change society, offering valuable lessons and support.