Kathy LaTour is a breast cancer survivor, author of The Breast Cancer Companion and co-founder of CURE magazine. While cancer did not take her life, she has given it willingly to educate, empower and enlighten the newly diagnosed and those who care for them.
Women ignite change across the globe.
As Mary Onyango moved to the microphone at the Reach to Recovery International (RRI) Breast Cancer Support Conference in Brisbane, Australia, her traditional Kenyan wrapper of bright greens and reds shimmered in the stage lights.
For the next 20 minutes Onyango spoke of the barriers she encounters daily as a founding member and executive director of the Kenya Breast Health Programme. In Kenya, education about early detection is practically nonexistent and poverty is so intense that Onyango has to offer women incentives, such as T-shirts and pink ribbons, to get them to come to informational meetings.
“People won’t come to informal education without some incentive. This is a combined result of poverty and the huge amount of funding available to HIV/AIDS awareness initiatives, which offer incentives,” Onyango says of her efforts to talk to women about early detection. “When breast cancer has to get in line behind poverty, it makes advocacy an uphill task.”
The former accountant, who also holds master’s degrees in both public health and business administration, became interested in breast cancer after her own diagnosis in 1999. She started running the breast health program in 2003 and since then has been a lone voice in her country, where she works to educate women and health care providers on the realities of breast cancer and the need for early detection while encouraging other breast cancer survivors to speak out.
In a plenary session on the second day of the three-day meeting, Onyango presented the realities of her country to an estimated 600 attendees from 47 countries. RRI, a program of the International Union Against Cancer, works to improve the quality of life for breast cancer patients, survivors, and their families by nurturing volunteer peer support and promoting services to meet the needs of women with breast cancer worldwide. The organization has held regional meetings around the world, with Brisbane being not only the first worldwide meeting but also the first in the Southern Hemisphere.
Global statistics from 2002 indicated there were more than one million new cases of breast cancer—statistics that represented 10 percent of the world’s cancer burden and 23 percent of female cancers. And now, there are more than four million women living with the disease worldwide.
Today those statistics have increased, and women such as Onyango who have survived the disease continue to lead the way in creating programs to help the newly diagnosed in their own countries—often with little more than personal energy and ingenuity. For many at the meeting, it was eye-opening to hear about the challenges facing women in many parts of the world who must overcome inadequate medical care, lack of interest in breast health, and nonexistent screening programs. Many discussions centered on who pays for health care, and, while most industrialized countries offer some kind of universal health care, these programs vary in how well they work depending on availability of medical care.
Issues addressed at the conference included those of young, gay, and indigenous populations and new research on every aspect of support. Speakers included Ann Steyn, the president of RRI; Stella Kyriakedes, president of Europa Donna Cyprus; and a number of Americans representing Susan G. Komen for the Cure, the Lance Armstrong Foundation, and the American Cancer Society.
Attendees chose from more than 120 breakout sessions where they explored myriad issues facing breast cancer survivors, from finding the “new normal” after diagnosis to hearing about individual organizations and their attempts to support women through unique cultural programs.
Renuka Prasad, a former teacher from Delhi, India, told women during a breakout session about the creation of Prashanti, a healing center that offers psychosocial support, complementary therapies, workshops, breast cancer rehabilitation, and counseling. The only one like it in the country, Prashanti, which translates as “supreme peace,” offers all its programs free of charge.
Prasad was embracing a new part of her life when she was diagnosed with cancer at the age of 49 in 1997. Her children were out of the home and she could travel to be with her husband, a general in the Indian army.
“It wasn’t the cancer as much as it was the threat to life,” Prasad recalls. “Once I learned about it, I knew I had to fight. It’s important to accept it and fight.”
After undergoing surgery and chemotherapy, she became interested in using complementary therapies to help her fight the disease, she says, finding particular help from Reiki, a healing practice originating in Japan that is administered by “laying on hands.”
It wasn’t the cancer as much as it was the threat to life. Once I learned about it, I knew I had to fight. It’s important to accept it and fight.
“When you are going through [cancer] treatment you have blocks in your body. I found that when the therapist couldn’t give the Reiki, I would feel out of sorts. It made me begin looking for places I could find this kind of healing. On a trip to London I went to a place and they had not only Reiki but many other healing therapies, such as massage, yoga, and pranaya, or deep breathing techniques.”
As her interest in helping others increased, Prasad became involved in the Indian Cancer Society, where she learned the reality that most Indians are in the late stages of the disease by the time they get to a large hospital, and the pervading fatalistic attitudes toward cancer make it difficult to motivate patients to go through treatment and be hopeful.
“The village doctor doesn’t know about cancer, so they then go to the nearest city in their state where they are recommended to see a specialist who diagnoses them and tells them to go to Mumbai [or] Delhi for treatment.”
Because Prasad knew that most of those traveling to Delhi had little support, she created Prashanti. “We have trained counselors to talk to the patients and a place they can share their experiences. We also have workshops. The therapies are taken from a variety of techniques—Reiki, guided meditation, acupressure. We get therapists who want to donate their time.”
Prashanti also provides home-cooked meals and clothing for the patients, many of whom do not go home to their villages while undergoing treatment.
In Brisbane, women listened intently to how Prasad engaged the cancer community to help with Prashanti, and how she is overcoming the uphill battle when it comes to supporting girls and women due to India’s attitudes toward females. She says that if a boy gets cancer in India, the family will do anything to see he gets good treatment. But if it’s a girl, fewer efforts are made.
To get women and girls to come to Prashanti, Prasad says volunteers visit them in the hospitals and talk to them and their families to sensitize them to the idea of taking some time away from their families. It’s a difficult concept for the women, Prasad says, because Indian women put themselves as a low priority.
Both Onyango and Prasad, like many of the attendees at the meeting, were listening as often as they were talking in an attempt to learn techniques to garner more government attention and funding for breast cancer in countries where communicable disease and malnutrition are rampant and indigenous medicine is often the first choice for anyone facing illness.
At one point during her talk, no one responded when Onyango asked the audience, many of whom represented African countries, if any had an organized program for cancer screening or treatment.
“Cancer has not been identified as a priority health issue despite being the leading cause of death after age 15,” Onyango says, adding that the breast cancer patients in Kenya are young, have more advanced disease, and more often have hormone receptor-negative disease. “Treatment is not standardized. Quality is not good, and pathology and imaging are not available in a timely way.”
In parting, Onyango invited the audience to join her in Kenya to help spread the word.