Nov 01 2023 / Round the Table Magazine
Advocates for early awareness and community
By Matt Pais
When Tuty Effendy was diagnosed with breast cancer during her early 30s in 2000, she had many family members and friends supporting her. Yet because none of them had been through the same experience, Effendy, who was a first-year MDRT member in 2022 from Jakarta, Indonesia, still felt alone.
That’s why, after meeting one of Lovepink’s founders, Effendy became involved in the organization, which since 2014 has advocated for early breast cancer detection and support for those who have been diagnosed and this year received a $10,000 MDRT Foundation global grant. “I promised to myself, if God healed me, I want to share my experience and gift with people who are going through what I went through,” said Effendy, who completed her treatment in May 2001. “It felt like all my dreams came true through Lovepink.”
All this is coming from someone who had never heard anything about early detection until she received a brochure as part of Breast Cancer Awareness Month when she was in Singapore for her mastectomy surgery in October 2000. In the last decade, Effendy saw women in Indonesia resist medical treatment and chemotherapy after being diagnosed because they didn’t want to receive an operation, which allowed their cancer to spread.
If she had received the support she now provides, Effendy said, she would have experienced what the people helped by Lovepink do: “At first they feel afraid,” she said, specifically recalling one woman who had been reluctant to receive chemotherapy or have an operation, “but after becoming part of Lovepink and hearing my living testimony of survival, they can see hope.”
Ten years ago, before Lovepink was even registered as a foundation, Effendy led a chat of 50 people via Blackberry messenger, acting as a role model for those who had just been diagnosed. Now, she is part of many Lovepink WhatsApp groups, separated into numerous chats of 200 to 300 people. One chat is under the banner Warrior, for those currently receiving treatment for breast cancer. Another chat is dubbed Survivor, for those who have finished treatment. Effendy — who served as secretary for the organization from 2014 to 2019, managing administrative processes and coordinating with third parties like donors and health organizations, and became a speaker in 2019 — supports both groups, answering questions and sharing her experience of treatment, side effects and more.
Participants in Lovepink often hear about it through word-of-mouth, either via friends, family or even other women they meet while going through treatment. Because Effendy lives near one of the biggest cancer hospitals in Jakarta, she is often the one who stops by to visit a woman who has recently been hospitalized. When a woman who lived alone had no one to accompany her to her checkup, Effendy went with her. Giving moral support is one of Lovepink’s core missions, alongside a goal of reducing advanced stage breast cancer by 2030 through early detection education about self-examination and ultrasound checks.
Of course, part of Lovepink’s mission is to not just reach women one at a time but connect with and help large groups. To that end, the MDRT Foundation grant will support the Lovepink program that provides free ultrasound services for women with limited financial resources. Collaborating with hospitals in numerous cities in Indonesia, the program’s goal is to help 10,000 women. Approximately 2,500 women received these services in 2022. This effort is an extension of a longer-running program in which the Pink Van, supported by radiologist volunteers who help use a mobile ultrasound device, brought services to different communities.
When Effendy helps train Lovepink members who want to volunteer (the vast majority of the organization’s board members and volunteers are breast cancer survivors), they are trained to speak about the importance of early detection and also to work with doctors who administer these ultrasounds, which can be given to 15 to 50 people per day in each area.
Likewise, throughout the year, Effendy and the rest of Lovepink’s Pink Squad of activists strive to spread their message and services, including a recent effort in Bogor, Indonesia, where 100 women received ultrasounds each day for five days in a row. And during Breast Cancer Awareness Month every October, Lovepink hosts a fundraising run or walk branded as “Jakarta goes pink,” as well as other activities that help share how early detection saves lives.
“I am living proof that breast cancer is not the end of the world,” Effendy said. “You can be healed with a strong spirit and good treatment.”