Breast cancer survivors, patients and relatives of those who have died are taking the fight forward by sharing powerful stories.
With her shaven head, Tien Nguyen looks like a young cancer patient.
She’s the sister of a breast cancer patient who died, and now, a sister in the sisterhood that is helping fight the dreaded, deadly disease by sharing their stories and offering both material and psychological support.
In a soft but firm voice, she tells her story, and that of her late sister, Thuong Sobey.
“My sister was diagnosed with BRCA1 and BRCA2 tumor suppressor genes in October 2012, a few days after her wedding day, and later, stage 4 breast cancer,” she said.
Mutations in tumor suppressor genes like the BRCA are considered “high penetrance” as they often result in cancer, though the majority of cancers are not caused by this mutation.
“When Thuong fell ill, newspaper and books I found didn’t have enough information about the disease. I couldn’t find people like me who have family members suffering from this cancer either, so I felt deeply lost.”
Thuong Sobey was married to an Australian man and family support from all sides took her to her husband’s hometown for surgery.
“Not only were patients aided by psychologists and caretakers at the hospital, we as family members were cared for by these staff as well. They even gave us documents to read about breast cancer.
“That was 2013, and Vietnam didn’t have this kind of holistic service,” Tien told VnExpress International.
So the sisters decided to do something about it when they returned from Australia to Vietnam.
There was not much information available online in Vietnamese and relevant knowledge in Vietnamese in print was also too generic in 2012.
The two sisters decided to kickstart a revolution of knowledge about breast cancer in Vietnam.
Founded in March 2013, the Breast Cancer Network Vietnam is a member of the Union for International Cancer Control, which works to increase early detection of breast cancer and to improve the quality of life for women diagnosed with the disease.
“My sister and I started with a website where we uploaded translated information about the illness that we’d got from Australia. We also created a platform on the website where patients of breast cancer and people whose family members are breast cancer patients could get together and support one another.”
Tien did not find doing this easy or rewarding, initially.
“When you work with sick people, it is very easy to take in their negative energy, especially if you are not trained. It’s almost like a give-take game, helpers provide positive energy, patients negative energy.
“While the latter improve thanks to the positivity the former bring, the helpers can easily fall into depression if they don’t know how to deal with the negativity, which was my problem and one of the reasons I tried to quit doing this.”
She quit, and then returned. Today, the co-founder and CEO of Breast Cancer Network Vietnam (BCNV) is a successful activist.
Having come through personal and institutional ups and downs, the network is now a hub of 300-400 breast cancer patients and 5,000 volunteers.
Tu, a member of BCNV, was diagnosed with stage 3 malignant tumor last April.
She joined the network a couple months ago and appreciates the physical and mental benefits the organization’s activities have given her.
“I came to know about the network through other patient friends. I’ve attended events where doctors share information about cancerous tumors as well as zumba and yoga classes.”
Tu said that most breast cancer patients are closed up and feel low about themselves, so communities like Breast Cancer Network Vietnam and Salt Cancer Initiatives, which she is also a part of, allow them to come out of their illness shells and mingle with others.
Unlike most other women with breast cancer, Tu is a single mother.
Her 10-year-old daughter has been unnerved by the news. The girl had always hated and demonized cancer, having seen several movies where cancer patients are haggard and downcast.
“I didn’t want to hide my illness from my daughter. I wanted her to know what is going on, so she can take care of herself and be more independent,” Tu said.
Because her daughter is worried that Tu would end up like the cancer patients on screen, Tu tries her best to maintain a positive image, depsite several chemotherapy sessions wreaking havoc on her body.
Her daughter has since ceased to be a child, taking caring of Tu.
Hiding and revealing
In contrast to Tu, Mai, another member of BCNV, decided to keep her illness a secret from her daughters, both studying in the U.S. In fact, she learnt of her diagnosis the very day her younger daughter left for the U.S.
Mai, who already had one breast removed, was diagnosed with stage 3 with a malignant 1.5 mm tumor under her right breast in 2015.
When she was hospitalized and could not video-call her daughters, her husband made up stories about Mai going on philanthropy trips.
“My younger daughter would lightly chide me for leaving my husband at home. All my hair fell out because of the chemo, so sometimes when I did talk to her on the phone, I wore wigs.”
At exactly the time she yearned most for her daughters’ hugs and affection, she gave higher priority to their peace of mind.
“One day, my younger daughter, a chemistry student, called me from the U.S., and told me about wanting to do a case study for her research and asked me if I knew any cancer patient who could participate.”
Mai broke down.
Both her daughters were in the same room at that point and it became a emotional watershed moment for all of them.
Mai is grateful that she found BCNV three years ago in her search for information about the disease.
“My right arm hurt like crazy because of the tumor and other things. Thanks to the family (network) members who have gone through this before, I learnt more on how to deal with it,” Mai told VnExpress International.
She also cautioned about the sensitivity and consideration for other patients when sharing one’s own stories.
“I’m lucky to have my husband take care of me and blessed to have knowledge about this disease, but others are not as fortunate. I know of a younger woman whose husband left her a while after she got breast cancer, because he didn’t have the patience and his interest in his wife wore off.
“So I’m always vigilant when sharing my experience and advice with other patients.”
Show you care, donate your hair
To help women deal with the loss of hair as a result of chemotherapy, an event that can be traumatic, given the vulnerable context, BCNV has worked hard to provide wigs that boost both looks and morale.
“We built the wig library in 2013 and gifted the wigs to our members on a first-come, first-serve basis. But they were made of synthetic hair, which is super hot to wear. The hair gets curled up, deteriorates after a while, and cannot be used by a another person,” Tien said.
BCNV switched to real hair wigs in 2015, and began scouting for real hair sources. The production of human hair wigs is a time-consuming and costly process.
Instead of giving away the wigs only to members, BCNV began delivering wigs to different hospitals in Hanoi and Ho Chi Minh City. Patients without hair can borrow them and once their hair grows back, pass them onto the next patient in need of a confidence boost. This wig library model has cultivated a culture of sharing among breast cancer patients in Hanoi and HCMC hospitals.
BCNV aims to employ the same model in Nghe An Province, seven hours south of Hanoi, with 50 sets of human hair wigs.
BCNV’s “sharing is caring” culture was evident at the Pink Hat Day 2018 event held in District 7, HCMC, on October 28. The event, which aims to support breast cancer awareness, uses the Vietnamese traditional cone hat as its symbol and sets itself apart from the iconic pink ribbon of breast cancer awareness the world knows.
This year, the event included a booth for hair donation. It attracted a four-year-old hair donor, An Nhien.
Nhu Luong, An Nhien’s mother, said it was her idea to donate her daughter’s hair. But she asked for her daughter’s permission more than a year ago and received her consent.
“She likes to share and help other people. Whenever she has food, she shares it with people around her,” Nhien’s mother said.
When asked if she was scared to have her hair cut, Nhien shook her head. “I’m donating to help sick people who can’t grow their own hair. I’m going to have my hair just like my mom after I donate,” the girl said as her mother and volunteers surrounding her beamed in delight.
A total of 150 people came and gave their hair for charity at the festival, and along with donations from other organizations, 230 hair sets were collected. More than a thousand people attended the event.
It takes more than one organization or person to alert women about this illness that can prove fatal, and inform them how crucial it is to prevent it by having an early screening.
The government has invested more than half a million dollars on a mobile van to provide free mammograms for women across the country.
The campaign, “Breast cancer screening at 40” is coordinated by the Ministry of Health, Bright Tomorrow Fund and Hanoi’s K Hospital. In the October 13-November 3 campaign, it is expected that 8,000 women in the two big cities Hanoi and Ho Chi Minh and nine provinces in the north and central regions will be screened free of charge.
Nguyen Viet Tien, Deputy Minister of Health, said breast cancer can be cured if detected early – the sooner the detection, the easier, cheaper, and more effective the treatment. However, many women in Vietnam do not undergo breast cancer screening due to psychological apprehensions, leading to many cases where the disease has already reached a late stage and treatment becomes more costly and has less chance of succeeding.
Breast cancer also affects men and BCNV’s Pink Hat Day festival also encouraged males to register at its breast screening booth, while attracted many male festival goers.
“I came to this event to understand more about the life and needs of women,” said Nguyen Do Quoc Bao, a 17-year-old male student.
‘Be a warrior, not a worrier’
That was the slogan of the festival, which Tien Nguyen has made her own since her sister passed away.
“I started this network because of the love for my sister. I used to tell her that my commitment to BCNV depended on her, that I would only continue doing this if she took better care of herself,” Tien said.
After Thuong Sobey passed away, Tien left BCNV and went looking for another job. But she did not feel right.
“I felt emotionally heavy and could neither apply myself nor dedicate myself completely to my new job, which was a well-paid one and could provide me a comfortable life in Hanoi.
After three days at my new job, I wrote a long resignation email and sent it to my boss at 2 a.m. on a Sunday morning.”
The boss promptly responded and expressed her faith in Tien’s choice and advised her to follow what her heart said.
In her five-year journey with BCNV, Tien has touched, inspired and been inspired by many individuals.
Mai, the mother who’d kept her illness a secret from her daughters before revealing it in dramatic fashion, did not get a wig from BCNV because her younger daughter returned home and made her mother a wig out of her own hair.
Mai’s hair has grown back now and she has trained her right arm so she indulge in her favorite hobby again – painting. She participated in a free drawing class organized by BCNV in order to improve her skills.
Mai does not think any cancer survivor can fully and eternally recover, because cancer cells might still be lurking in the body and can resurface anytime, anywhere.
But she has learnt to live with it. “A wise and educated woman is one who knows how to take care of herself first,” Mai said.
Younger people are getting breast cancer
Breast cancer is the most common cancer among Vietnamese women. Its incidence has more than doubled over the last two decades from an age-standardized rate of 13.8 per 100,000 women in 2000 to 29.9 per 100,000 women in 2010, according to the World Health Organization.
Each year in Vietnam, nearly 165,000 new cancer cases are detected, of which breast cancer number is over 15,000, or 9.2 percent.
In recent years, younger Vietnamese women are getting breast cancer.
Deputy Health Minister Tien said he has operated on a 9-year-old patient for breast cancer, although such cases are quite rare. Typically, the older the women, the higher the risk.
Mai and Tu are among the few patients who feel comfortable enough to share their stories, and this makes a big difference in the lives of others.
The survivors bring priceless optimism to this fight. Many survivors say breast cancer has uncannily invigorated them and motivated their loved ones.
Her eyes glowing, Mai said: “My younger daughter has decided to enroll in a master’s degree in medical biology to help find ways to cure her mother.”