Article on the Pink Ribbon Cowgirls by Darline Turner:
Women in their 20’s and 30’s are on the fast track to full lives. They’ve completed college and many have earned advanced degrees. They have careers and are pursuing their intellectual dreams. Many women meet their life mates and plan long-term relationships for the first time. Thoughts turn towards starting families and children; how to balance all the facets of their busy and exciting lives? Endless possibilities exist and young women stand poised to move forward – strong and confident. But for many young women, this forward progression comes to a screeching halt when they are diagnosed with breast cancer.
According to Surveillance Epidemiology and End Results (SEER) of the National Cancer Institute, it is estimated that 192,370 women will be diagnosed with and 40,170 women will die of cancer of the breast in 2009. 12.4% of the women diagnosed between 2002 and 2006, the last years for which data has been compiled, will be women under age 44.
“A young woman with breast cancer is pulled out of her peer group,” says Michele Burton, a young breast cancer survivor. “Her entire focus shifts from career and family to survival. Although friends and family members try to be supportive, they really can’t understand the impact that a cancer diagnosis has on a young woman. The body image issues alone are overwhelming.”
According to SEER, the median age at diagnosis for breast cancer is 61. Breast cancer support materials and groups target their information to women in or near this age group. Young women attending these support groups seldom find answers to questions such as dating with breast cancer, fertility preservation and raising children while on chemotherapy. Burton, a volunteer at the Breast Cancer Resource Center of Austin (BCRC), along with Shauna Martin and Audra Outlaw, also young breast cancer survivors, organized The Pink Ribbon Cowgirls – A Social Network of Younger Breast Cancer Survivors. The group provides support and information to young women with breast cancer and operates under the direction and support of the BCRC.
The Pink Ribbon Cowgirls held their first meeting in April 2006 at Central Market Café on North Lamar Boulevard. With each luncheon, the group continued to grow. Today, three years later, the group consists of 150 members, has representation on the Breast Cancer Resource Center Board of Directors and now has its own director of Young Survivor Services, Runi Limary, a two-year breast cancer survivor.
“The Pink Ribbon Cowgirls is really a social networking group,” says Limary. “We organize girls’ night out evenings, speaker meetings, workshops, seminars and family-friendly activities.” They discuss topics like nutrition, fitness, sexuality, fertility and family planning, caring for young children during treatment, career and dating issues. “Our focus is on being strong and thriving,” says Limary. “We are all very aware that we were diagnosed very young and that having cancer sucks. We do what we can to support one another. We’re really here for one another.”
Limary was 28 when she was diagnosed with breast cancer back in 2005. She found a lump in her right breast on self-examination. “I went and had an examination by my physician who sort of pooh-poohed the idea of me having cancer. She did order a mammogram and there was nothing seen, so she advised me to have another mammogram in six months.” Limary was very concerned and actually had a follow-up three months later because the lump seemed to double in size. “I had a needle biopsy at that time and it was negative. I saw a surgeon three months after the biopsy who removed the lump and sent it for evaluation. The Pathology report came back positive for stage one cancer without lymph node involvement.”
Limary had a mastectomy with reconstruction in January 2006. Her breast tumor came back from pathology HER 2+ and her surgery was followed with five months of chemotherapy. Because her tumor was estrogen-sensitive, she is taking Tamoxifen suppression therapy. In 2007, Limary tested positive for a variant of the BRCA 1 gene mutation. She decided to have a prophylactic left mastectomy with reconstruction. Limary completed all therapies, (with the exception of the Tamoxifen, which she will continue to take until 2011), in November 2008.
One of the most difficult challenges that young women face is preserving their fertility and having children while battling breast cancer. Michele Burton found a lump in her breast on self-exam in 2001. Her gynecologist also felt the lump and referred Burton for a mammogram. She explained that Burton’s risk of having breast cancer was low because she was just 32 years old. Burton’s mammogram and additional ultrasound images showed “micro calcifications in her breast.” She did not receive treatment at that time and had a repeat examination in six months. At the re-examination, a radiologist who specializes in breast disease was more suspicious of the spots on the mammograms and asked Burton to have a biopsy right then and there. The biopsy results showed that Burton had invasive stage one ductal carcinoma. Two weeks later, she found out that she was pregnant.
“It was all so overwhelming,” says Burton. “Everyone I talked to said to terminate the pregnancy, but I didn’t want to do that. Finally, I went to MD Anderson Cancer Center in Houston. Those doctors were the first and only ones to tell me that I could actually continue the pregnancy.” Burton had a lumpectomy with sentinel node biopsy in her first trimester and started chemotherapy in her second trimester. Three weeks after she completed chemotherapy, Burton gave birth to her daughter. One month after delivery, she had radiation therapy and Burton also completed five years of Tamoxifen therapy in 2008. To date, Burton’s daughter has no known developmental problems. Time will tell if she has any fertility issues as a result of her mother’s chemotherapy.
In May 2002, Audra Outlaw was 31 years old and had been married for eight months when she noted a lump protruding from her left breast. Mammography could not detect any tumor, but ultrasound revealed two tumors. Outlaw’s biopsy results indicated that she had very aggressive, locally advanced, invasive, ductal carcinoma, between stage two and stage three. It had entered the lymph nodes and her doctors predicted that it would spread.
“It was a very emotional time,” says Outlaw, who understood that her cancer treatments would likely leave her infertile. “I felt so badly that my husband would never have the family that we had hoped for. I wasn’t even sure how long we’d have together. It was also very difficult to imagine having both breasts removed. But I knew that it was the right thing for me to do. I couldn’t wait around monitoring the tumors and waiting to see if the cancer spread. I didn’t want the worry.”
Outlaw had her surgeries performed at MD Anderson Cancer Center and her chemotherapy here in Austin. Once again there was trouble. “I developed painful ovarian cysts while on the Tamoxifen. While it was blocking my menstrual cycles, it didn’t completely suppress them. That meant I had a chance at being fertile enough to have a baby.” It was a very narrow window, but according to Outlaw’s obstetrician, Mark Akin, MD, it was enough to try one cycle of Clomid. Outlaw took the medication and conceived. She delivered her son in June 2005, two years and two weeks after her breast cancer diagnosis. Outlaw conceived a second child naturally, and delivered a healthy baby in February 2007. There is no sign of her breast cancer recurring.
Shauna Martin’s course was a bit more complicated. Diagnosed with stage two breast cancer in her left breast in August 2005, Martin knew she wanted more children. At 33 years old and with a 19-month-old son, Martin relentlessly researched how to preserve her fertility. She contacted Fertile Hope, a nonprofit organization that provides information and support to cancer patients who risk losing their fertility to cancer treatment. Martin, who had an aggressive breast cancer that required aggressive treatment, had planned to freeze her eggs but learned eggs don’t freeze as well as embryos, so she had fertility treatments and preserved 12 embryos prior to lumpectomy and chemotherapy. Following all of her cancer treatments and five years of Tamoxifen suppression, she can try to conceive using the frozen embryos. She will be 40 years old.
One month after her diagnosis, her younger sister was diagnosed with the same aggressive breast cancer. Neither woman has the known breast cancer gene mutations, nor do other family members have breast cancer. Martin’s sister had both breasts removed and followed with chemotherapy. Martin had her right breast removed and both breasts reconstructed, and will likely have both ovaries removed in the future to completely suppress estrogen production and prevent tumor recurrence.
Young women with breast cancer face difficult treatment decisions that are further complicated by such issues as blossoming careers, preservation of fertility and caring for young children while in treatment. Single survivors wrestle with telling a potential partner about their cancer and issues of intimacy. The Pink Ribbon Cowgirls offer social outlets where young breast cancer survivors can meet and share support, ask questions and get answers. For the young women of Austin, they’re nothing short of the cavalry.
Support Resources
The Breast Cancer Resource Center of Austin
A centralized source of information, education and support that enables women to be active, knowledgeable participants in their healthcare. The center is open to the public and free of charge.
The Breast Cancer Resource Center
900 E. 30th St., Ste. 108
Austin, TX 78703
512.544.0900 or visit www.bcrc.org
The Pink Ribbon Cowgirls
A social network of young breast cancer survivors. This group specifically addresses the needs of young women 18-44 who develop breast cancer. The program is fully funded and supported by the Breast Cancer Resource Center of Austin. For more information on the organization, to join the social networking group and to learn more about activities and events, contact Runi Limary, director of young survivor services at 512.544.0907 or runi@bcrc.org.
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