In 1993, when Ivis Febus-Sampayo was nursing her second child, she had an odd sensation in her breast. She asked her doctor to check it out. He did not do much of anything. For more than 18 months she complained to him while living with discomfort and worry. A dull feeling deep inside turned into stabbing pain. Finally she insisted on getting a breast exam and a biopsy from her doctor. At age 38, she was diagnosed with Stage 2B breast cancer. She had a lumpectomy, radiation and chemotherapy followed by five years of Tamoxifen.
This woman is not a shrinking violet.
While undergoing chemotherapy she spoke at a “New York Race for the Cure” breast health workshop. Her mission became to connect with women where she lived to raise awareness. She got involved with the American Cancer Society, she appeared in the ACS Look Good Feel Better™ posters and video, and she joined the National Hispanic Women’s Health Initiative in Washington, D.C.
In 1996 Ivis joined SHARE, a New York City-based nonprofit organization that supports women with breast and ovarian cancers (sharecancersupport.org). She made sure that every English-based support service was available in Spanish.
We all bleed the same color. Each of us deserves respect. The patient is the center of the health care team and she needs to know this and to own this.
In 1997 she attended the first Breast Cancer Survivor forum at the White House, with Vice President Gore. In 1998 she received a citation award from Governor Pataki (New York State) for her focus on Latino community women’s health. In 1999 she was honored by the National Breast Cancer Coalition for her advocacy work. She met with First Lady Hillary Clinton who was also feted at this event.
A coincidence helped her make another informed decision.
As a little girl she was precocious and curious. She loved to dance Salsa. After she dealt with breast cancer, she wanted to know why she got breast cancer. She reached out to far flung relatives over several years. No one knew about a breast cancer history in her family. To her surprise, while facilitating a SHARE Spanish support group, she met her father’s cousin. She had breast cancer and she told Ivis about her sister’s breast cancer journey, too.
This was insightful and alarming to accept.
Finding out that she had a family history of breast cancer, changed her. In 2003, Ivis took the blood test to see if she carried a BRCA gene mutation. If so, it would increase her risk of another bout with breast cancer and/or ovarian cancer. She tested positive. This high spirited lady chose oophorectomy surgery and she didn’t look back.
In our culture we rarely share information about health problems. Some of it might be due to language barriers, but there is a great deal of fear which stops many from seeking the facts.
Her health setbacks and lessons learned change lives.
Her messages about getting a second opinion, knowing your family’s medical history, being proactive and advocating for yourself are timeless and universal. Now, as the Senior Director of Programs at SHARE, she makes them front and center with 70 education groups and outreach efforts.
She makes breast health care a priority for all.
In 2011 she encouraged SHARE to design and develop a comic book style Novela to educate Latinas about breast cancer. (This format is familiar and friendly to this audience.) It was a success! Today SHARE hosts Japanese and African-American support groups too. Now 17 languages are spoken at its helpline. All services are free.
In 2013 Ivis was treated for a second primary breast cancer. It didn’t stop her. She keeps moving the needle for minority women. Myths about breast and ovarian cancer are fading away, due to Ivis’ might and light.