Back in 1998, Joyce Reinecke, JD, was on a cross-country business trip when her increasing fatigue and lightheadedness resulted in her being admitted to the emergency room and the discovery that she had tumors in her stomach, one of which was necrotic and bleeding causing her to be severely anemic. She was diagnosed with leiomyosarcoma, and the tumors, as well as all of the surrounding lymph nodes, were surgically removed. Before she was discharged from the hospital an oncology fellow casually mentioned to Reinecke that since she was scheduled to start chemotherapy she might want to consider options to preserve her fertility.
At the time, Reinecke and her husband hadn’t considered how her treatment would affect their future plans to have a family. The couple eventually decided to complete a round of in vitro fertilization and work with an agency to select a gestational carrier. Their twin daughters were born in February 2000. Reinecke, executive director of the Alliance for Fertility Preservation, shared her patient perspective during a keynote speech at the Family Building After Cancer: Fertility Preservation and Future Options Symposium held at Stanford earlier this month.
To continue the conversation, I reached out to Reinecke about the issue of fertility and cancer survivorship. In the following Q&A, she discusses advancements in the field, why patients need to be proactive in sharing their wishes to have a family with providers, and questions to consider prior to treatment.
What motivated you to focus your career on expanding patient and provider awareness of fertility preservation?
When my girls were around two, I received several inquiries from family acquaintances who had young adults in their lives who were newly diagnosed with cancer. These people had reached out to my parents, to try to understand more about what I had done, where I had gone, etc. in order to preserve my fertility. In speaking to others and hearing about their challenges in finding fertility information and services, I started to really feel that something about the status quo was not right. These patients/family members had learned about possible infertility because they knew of my story, not because their doctors had discussed it with them. This really emphasized to me that my situation – learning about my possible infertility in a very ad hoc way – was not unique, not unusual, but the norm, and perhaps, lucky.
I began doing research around the issue, to see what was out there, what information was available online, etc. I found very little, but I did stumble upon information that Fertile Hope was having a fundraiser. I was in complete shock that a new nonprofit focused on this very issue existed, not to mention that it was based in New York. I went to the fundraiser, signed up to volunteer, met with Lindsay Beck, and signed on as Employee #2. The rest is history.
A past study shows that less than half of U.S. physicians are following the American Society of Clinical Oncology’s guidelines suggesting all patients of childbearing age be informed about fertility preservation. How can patients make sure they get the necessary information about their fertility options prior to treatment?
This question is tricky, because I feel like the onus for initiating this discussion has to be on the provider. Newly diagnosed patients are overwhelmed with all sorts of medical information and decisions to make, not to mention the emotional distress of the diagnosis. Also, patients don’t know what they don’t know. Sometimes providers mistakenly believe a patient isn’t interested in fertility preservation because they don’t ask about it. However, providers have to remember that newly diagnosed young adults probably have very little understanding about how chemotherapy and radiation work – unless they have a cancer that has a direct impact on their reproductive system they probably have no inkling that their fertility is at stake.
That being said, patients need to advocate in their own interest (or enlist a family member to help them do this if they cannot during this difficult time). That means communicating their wishes and values about future parenthood with their providers. That means asking the right questions: Will I be able to have children in a few years? Ever? What can I do about it? It might also mean being able to challenge their doctor’s disapproval or ask that treatment be pushed back [so the patient has time to] bank sperm or eggs. Which is sometimes hard to do.
Continue Reading »