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Guiding young women with breast cancer

Imagine being a young woman in your mid-30s. You are a wife, a mother to a toddler with boundless energy and a filial daughter to elderly parents. You’ve just been promoted and enjoy a busy and fulfilling career. Your biggest concerns are the rising cost of living and whether to try for a second child. 

Then one day, you discover a lump in your breast and have it investigated. At the appointment to review the results, you are told that you have an aggressive type of breast cancer.  As the doctor goes through the different treatment options, you can barely focus and worry about what this means for your family and your future.

The Young Women with Breast Cancer programme at the National Cancer Centre Singapore (NCCS) and Singapore General Hospital (SGH), affectionately known as YoWo, was set up to help support and guide 18 to 45-year-old women affected by the disease, because they face several challenges which are unique to their stage of life.

Breast cancer accounts for 3 out of 10 cancer diagnoses for women in Singapore. It is the most commonly diagnosed cancer in women from 30 to 79 years old. At NCCS, approximately 16 to 20% of breast cancers are diagnosed in women 40 years and under. 

The team in the Young Women with Breast Cancer programme supports and guides patients

Processing a breast cancer diagnosis

“The appointment when a patient receives a cancer diagnosis is extremely difficult and incredibly overwhelming,” said Clinical Assistant Professor Tira Tan, YoWo Lead and a Consultant in the Department of Breast and Gynaecology, Division of Medical Oncology, NCCS. 

“No matter how well we explain the diagnosis and treatment options, our patients can only take in so much information. To add to that, because the management of breast cancer is so complex and affects different facets of a patient’s life, a young woman with breast cancer has many more concerns to address.”

Young women who receive a breast cancer diagnosis can be overwhelmed by information and decision-making (Credit: iStock)

Before starting treatment, a young woman may consider fertility preservation to improve their chances of having children in the future. They have to weigh the pros and cons of breast conserving surgery, if feasible, and if not the options of reconstruction during lumpectomy or mastectomy. Given the young age upon diagnosis, they may consider genetic testing of which the results may impact their choice of surgery. Depending on the stage and type of breast cancer, they may be eligible for pre-operative therapy to decrease tumour size, allow tailoring of treatment and improvement in treatment outcomes. All these considerations do not include the impact that their treatment will have on their work, finances, relationships and family. 

“They are overcome with the sheer amount of information they have to digest during this time and have difficulties making a decision that takes potential repercussions into consideration,” said Asst Prof Tan.

Asst Prof Tan recounted examples of patients who choose to undergo mastectomy as their default choice of surgery and after completing treatment regret that they did not choose to preserve their breast or do reconstruction, as this has impacted their sense of identity and femininity. 

“Patients need help making informed decisions about treatment because the impact will be felt later, when the dust has settled. The intent with YoWo, is for them to be able to talk to us about their specific worries and concerns and use us as a sounding board. We offer them support through their cancer treatment journey from diagnosis, during cancer therapy and all the way through survivorship."  

How YoWo works

The Young Women with Breast Cancer programme team (clockwise from top-left) Dr Grace Kusumawidjaja, Sister Lee Teng Teng, Assistant Professor Tira Tan (Lead), Sister Krismaine Ng Li Juan, Dr Tan Si Ying, Nurulshazwani Bte Mohd Shahrudin

At their first appointment, the surgical oncologist or oncologist assesses the needs of the young breast cancer patient. Working with the YoWo team, young patients are referred to the Centre for Assisted Reproduction (CARE) at SGH for fertility preservation if needed. Others are referred to medical social workers to provide financial counselling and psychiatrists who can help with concerns about sexual health. The YoWo team also helps coordinate their referrals to radiation oncologists and plastic surgeons, as needed, to develop surgical and treatment plans that address their unique needs.

“All patients diagnosed with breast cancer are referred to a Breast Care Nurse for counselling, to clarify queries, and for emotional support,” said Dr Tan Si Ying, YoWo team member and Associate Consultant in the Department of Breast Surgery, Division of Surgery and Surgical Oncology, SGH and NCCS. 

“Young women diagnosed with cancer have different, specific needs according to their stage in life, and are referred to the YoWo team and a Breast Care Nurse with the expertise to help women in this age group. Despite initially appearing to be calm and needing little guidance, some may display higher levels of distress and an obvious need for more support later on."

Sister Lee Teng Teng at NCCS and Sister Krismaine Ng Li Juan at SGH are the Breast Care Nurses for young breast cancer patients going through treatment and surgery. 

“Young women typically don’t ask all their questions at the first appointment,” shared Sister Teng Teng. “Usually, they go home, have time to think and then send questions to me over text message. It's more informal and they feel they can share their concerns more freely."

Patients often call a dedicated phone number to ask Sister Teng Teng and Sister Krismaine for information and age-specific resources to address concerns about fertility, breast reconstruction, treatment and more. 

"With YoWo, patients have someone to confide in and be vulnerable,” said Dr Grace Kusumawidjaja, YoWo team member and Consultant in the Department of Breast and Gynaecology, Division of Radiation Oncology, NCCS. “By the time I see them for radiation therapy post-surgery and post-chemotherapy, I can see the impact that the programme has made and how much better informed they are.” 

A pillar of support for young Singaporean women

The goal of YoWo is to provide a comprehensive support that runs parallel to clinical care so that the patient is not overwhelmed with additional medical appointments. About 40 patients have been seen annually since it began in May 2021 and there are plans to expand the programme. 

A key project for YoWo is curating information for young breast cancer patients that is both age-specific and culturally specific for the Singaporean context. The YoWo team is working to develop information on breast reconstruction, fertility preservation, sexual health and treatment. There are also plans to digitise information so that it can be conveyed to patients over phone applications to read and digest in their own time. Additionally, the YoWo team plans to set up a peer support programme. 

A project is in the works to digitise age-specific resources for young breast cancer patients (Credit: iStock)

"We find that the patients have specific needs, so a group format may not always be helpful," shared Asst Prof Tira Tan. "A one-on-one support system, where patients are matched to someone who can understand their specific needs, will allow them to form closer bonds and share more.”

Young women with breast cancer are living long lives

While treatment outcomes for young breast cancer patients are now better, they are also living longer with the treatment-related decisions they make and the lingering effects of cancer treatment. To better assess the impact of cancer, the YoWo team is conducting a quality-of-life study with patients to understand their needs, what support systems they rely on and what has most positively and negatively impacted their quality of life during their cancer journey.

One of the needs highlighted is greater awareness about survivorship. Young women with breast cancer often struggle to reintegrate back into society to rebuild their careers, familial relationships and social network while going for treatment and dealing with lasting side effects of surgery and chemotherapy. Greater awareness, support and understanding are needed to help them on their journey.

For more information about YoWo, please speak to your attending oncologist or surgeon.