After watching her sister battle breast cancer for seven years, Jamie Pleva knew she was at high risk for the same disease. She tested positive for the BRCA-2 gene for breast cancer, and soon after, Pleva decided to undergo a mastectomy with immediate reconstruction. But during the routine pre-surgery before the procedure, doctors found that she already had breast cancer. She was 29.
What came next was a mind-swirling amount of information on treatments, including chemotherapy and radiation. Then a friend said to her, "I know you're not thinking about it right now, but if you ever want children in the future, you should really think about freezing your eggs," said Pleva, now 32, of Nanuet, NY.
Her sister died of breast cancer. Doctors retrieved seven of Pleva's eggs on the same day that she read her sister's eulogy.
"My dad sat beside me in the hospital and he said, 'I'm helping one daughter cure her future, and in a couple hours, I have to say goodbye to my other daughter,'" said Pleva.
"There was a lot to think about with the diagnosis," said Pleva. "I had my boobs to worry about, but a friend told me that I should really consider freezing my eggs. I didn't even have a boyfriend at the time, so it was a weird thing to be thinking about."
Pleva is among only a small percentage of women who consulted a fertility specialist to discuss fertility preservation options. A new study found that few women in their childbearing years with breast cancer opt to preserve their eggs before going through chemotherapy and radiation treatment.
The research, carried out at the University of California at San Francisco, surveyed more than 1,000 women ages 18 to 40 who were diagnosed with five different cancers: leukemia, Hodgkin's disease, Non-Hodgkin Lymphoma, breast cancer and gastrointestinal cancer. The data showed only 61 percent of the women had received counseling on infertility and only 4 percent of women overall pursued fertility preservation.
White women who were younger and college-educated were among the most likely to receive counsel on fertility options from their doctors.
"There remains a large unmet need for fertility preservation," said Dr. Mitchell Rosen, lead author of the study and director of the UCSF Reproductive Labs and Fertility Preservation Program. "Chemotherapy and radiation save lives, but they potentially compromise the ability to carry on a legacy, something that we all may take for granted."
Just as it is automatic for patients to consult with a plastic surgeon to discuss reconstruction after a mastectomy, Rosen said fertility consultation should be a part of the process, as well. But, while reconstructive surgery is covered by health insurance, fertility preservation is not, and it can cost as high as $20,000.
"Because it's not part of the process right now, it is chosen, and that's part of the reason for the disparities that we saw in the study," added Rosen.
It is difficult for an oncologist to predict whether a woman will be infertile after her cancer treatments, but age and the type and dose of chemotherapy given factor into risk. Because of this, a good working relationship is needed between the oncologist and the fertility specialist to provide options to women, said Dr. Jennifer Litton, assistant professor of breast medical oncology at MD Anderson Cancer Center in Houston.
"This conversation needs to happen early during treatment decisions in order to have enough time to stimulate and retrieve the eggs before chemotherapy needs to start," said Litton. "There are certainly…some cases where it may not be appropriate as the treatment cannot wait the potential two- to six-week delay."
Dr. Natalie Cekleniak of Institute for Reproductive Medicine and Science in New Jersey noted that many patients' families have said they feel that just knowing eggs were frozen has positively impacted the affected member by giving them hope and a reason to look forward to a brighter future. She even said some data has suggested that this type of thinking actually improves survival rates.
"The counseling is extremely important and is complex," said Cekleniak. "As a [reproductive endocronology and infertility Ob/Gyn], we explain what is involved in recruiting eggs and freezing them. They need to understand not only the potential side effects, but the possibility of poor response and the odds for success in the future when the eggs are thawed."
A few months after her egg retrieval, and while in the throes of her chemotherapy treatment, Pleva met her now fiancé, Kevin. While it is unclear whether she will be able to get pregnant naturally, a framed photo of her frozen eggs sit beside her bed.
"We're going to try and conceive naturally, but just in case, they're my insurance," she said.