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It isn't easy for women to talk about breast cancer in Pakistan. The disease is steeped in social stigma, which is especially concerning given that Pakistan has the highest prevalence of breast cancer in Asia. The hesitancy to talk about breast cancer, to open up if you or your loved ones suffer from it, hinders an individual's chances of getting proper treatment. Many lives are lost simply because the disease isn't caught on time. This is where the national breast cancer helpline aims to step in — a telephone service that helps women open up about breast cancer, despite the taboos, and get access to quality healthcare.

The national breast cancer helpline is run by a digital health company called doctHERs that established the service in collaboration with First Lady Samina Alvi. According to the team at doctHERs, the first lady, a fierce advocate for breast cancer awareness, made it a priority to "inaugurate a national helpline that could provide timely access to information and resources about the disease".

"When we spoke to the first lady, there were a few points that both parties agreed would be key to establishing a trusted helpline," the team at doctHERs said. "[The helpline should give] access to quality, anonymous and convenient care. [It should lead to] a safe space for women to call in and get information [that is] medically vetted and presented in a culturally sensitive way. It should [also] be run by an all-female team of nurses, doctors, mental health professionals, and pharmacists."

With all of this in mind, the national breast cancer helpline was inaugurated by First Lady Alvi in September 2020. A year down the line, the team has a good understanding of how people respond to breast cancer and use the helpline.

What kind of assistance does the helpline offer?

The helpline is open for both men and women. "Really anyone who may have questions about Breast Cancer [can call in]", the team said. It offers:

• General information on breast health and breast cancer
• Referrals to local and national resources like hospitals, clinics, and radiology centres for mammograms
• Mental health support for patients, survivors, and their families
• Assistance in setting up appointments with consultants
• Material on how to conduct breast self-examinations

What happens once someone calls the helpline for assistance?

Once an individual calls in for help, the process is quite simple. "Calls are answered and triaged by care coordinators or nurses who understand the query first," the doctHERs team shared. The caller then receives a call back from from a relevant health care provider, such as a female doctor or therapist.

"The triage process allows us to gather information and ensure that we are connecting the caller to the right resource in order to address their concern accurately," they shared.

What kind of calls has the helpline received since its inauguration?

It's been a year since the national breast cancer helpline has been active, and so far it has handled more than 4,000 calls on all sorts of topics when it comes to breast cancer. "We have had women call us after they've discovered a lump and now need support on what to do next," they said. "We have had [calls from] families looking for assistance in locating diagnostic centres for mammograms and ultrasounds. We have had families — and even doctors — call us, asking if they can be connected to patient assistance programmes that offer financial help."

The helpline has also provided emotional help to the friends and family of individuals diagnosed with breast cancer. "Men and women contact us after finding out that someone close to them, such as a relative or friend, has been diagnosed with breast cancer. They call us for emotional support."

Fighting myths and misinformation

For the team behind the helpline, a huge part of what they do involves de-stigmatising breast cancer by separating facts and myths. "There are so many misconceptions about Breast Cancer," they said. "Misinformation about who is at risk and what it means when someone in a family is diagnosed. A lot of our time goes into briefing callers about facts versus myths."

According to Dr Komal Rizvi, the Mental Health Lead at doctHERs, 48% of women in Pakistan do not have a say in matters of their own health and this number multiplies when it comes to women in rural areas, the vast majority of whom do not have access to quality healthcare or are unable to access healthcare on their own, often relying on male family members to support them.

"So many women we speak to have had lumps for years that went undiagnosed and untreated," the doctHERs team said. "By the time they connect with our doctors, their disease has progressed and the odds are stacked against them."

The social issues often kick in after diagnosis. "We have been in touch with women who were diagnosed with advanced breast cancer and required immediate surgery, but their families were reluctant to get them treated. There are concerns that if word gets out about a mother having breast cancer, that might affect the marriage prospects of her daughters.

"There is resistance around the topic and we need to create awareness in both women and men to address [the issue], just like any other medical condition."

Breast cancer is treatable if it is caught early

Women need to be encouraged to open up about any signs of breast cancer they notice, since diagnosis at the right time can potentially save many lives across Pakistan. "If [the disease] is detected early on. it is treatable and can have a good prognosis," doctHERs shared. "It is absolutely heartbreaking that women [in Pakistan] are still dying of breast cancer in 2021, despite the disease being manageable if the signs are caught early on.

"One piece of advice for Pakistani women is get to know your bodies really well. Develop a relationship with your body and connect with it. Be aware of the things that cause [you to feel] ashamed of your bodies and loose touch with it. Our bodies are beautiful, we need to prioritise our health and learn to love and look after them."

The national breast cancer helpline number is 0213-873-7373.