The Struggle for Fertility Preservation for Those With Cancer
Getting a cancer diagnosis is daunting enough, but dealing with fertility on top of that is often too much to bear. Here's what experts want hopeful parents to know.
Amanda Rice was 37 years old when she was first diagnosed with breast cancer. She was faced with making a rapid decision about her fertility before beginning treatment.
Now a three-time cancer survivor before the age of 40, Rice was fortunate that her medical team at Memorial Sloan Kettering helped her navigate fertility preservation, but it was still a harrowing experience. "I didn't have a clue about cancer treatment and fertility until I was sitting in that chair," says Rice, who now splits her time living between New York and Texas.
Not everyone going through cancer needs to worry about their fertility, but in cases where a treatment plan may impact one's ability to have biological children, fertility treatments are recommended. The problem is these procedures can be costly, emotionally taxing, and not always discussed with patients before cancer treatments begin.
In Rice's case, it took 10 months of treatment including surgeries, chemotherapy, and radiation (that ultimately ended in medically induced menopause), to start to learn the ropes of oncofertility, or the bridge between oncology and reproductive medicine. She realized that even with supportive doctors and being in a state that mandates insurance coverage, preserving fertility as a cancer patient is still very much an uphill battle. She fought with the insurance companies which sometimes have outrageous stipulations—even arguing with cancer patients that they aren't "infertile yet" or that they need to try to have a baby for a duration of time before fertility can be covered.
Rice took that pent-up emotion and began thinking of ways to provide support for others facing similar fertility decisions. She turned that into a movement and after a eureka moment on a hike where she came up with the name, she gathered a team and created the nonprofit the Chick Mission in 2017. It aims to provide those 18 to 40 years old with education, resources, and financial aid for fertility preservation. The organization also works with lawmakers to ensure coverage of fertility preservation for cancer patients. But there's still a lot more that needs to be done.
The Struggle for Fertility Preservation
Specific cancer treatment can lead to infertility, such as undergoing radiation to the pelvic area or taking chemotherapy drugs like Cytoxan. Cancer cells are rapidly dividing cells, and "chemotherapy agents used to treat cancer are targeting rapidly dividing cells," explains Kara Goldman, M.D., associate professor of obstetrics and gynecology (reproductive endocrinology and infertility) and medical director of fertility preservation at Northwestern University Feinberg School of Medicine. "The follicles in the ovaries that contain all of the eggs are also rapidly dividing cells, making them an unfortunate target in cancer treatment."
Not every patient with a cancer diagnosis has a team of doctors that help them navigate fertility. Some doctors don't even broach the topic. "Some physicians are narrowly focused on saving the life of the patient with little time or resources to expand to other topics," says Kutluk Oktay, M.D., Ph.D., professor of obstetrics & gynecology and reproductive sciences and director of laboratory of molecular reproduction and fertility preservation at Yale School of Medicine and currently the co-chair of American Society for Clinical Oncology Fertility Preservation Guidelines Committee.
Things have come a long way in the last two decades, partially thanks to the new guidelines Dr. Oktay helped write to disseminate to all oncologists. These guidelines, first written in 2006 and updated in 2018, inform clinicians about how to have a discussion with and support their patients, and what fertility options may be available.
Another issue? Geography. Those living in rural areas may not have access to someone with fertility expertise. Sometimes patients can travel to a larger city to preserve their fertility, but in cases of time being of the essence and patients being very sick, it isn't always feasible.
Of course, financial access is also a big problem. There is no federal law requiring insurance companies to cover fertility preservation. In 2017, Connecticut and Rhode Island became the first two states to pass laws requiring insurance companies to cover these treatments, and several other states have since done the same. But more needs to be done to facilitate access for those who need it. "Even with the amazing work of these organizations, and even if we hit ideal coverage in every state, there will still be a gap in access to care," says Dr. Goldman.
Tracy Weiss, executive director of the Chick Mission and cancer survivor herself, understands firsthand just how worrisome the financial aspect can be. "One day you're a professional and a sister and a wife and a daughter and the next day you are a cancer patient," says Weiss. "You're overwhelmed with swirling decisions around treatment plans and worrying about their own mortality, coming up with $15-20,000 to put your eggs on ice for the hope of a future family when your cancer chapter is over, is just another thing that feels crushing."
What Patients Can Do to Preserve Their Fertility
Talk to your doctor
For patients who intend to have a biological child one day, it's important they talk to their doctor as soon as possible since they may only have a short window to undergo fertility treatments prior to cancer treatment. That can be as simple as telling your doctor that your goal is to have a family one day, and you'd like to explore your options. If it's intimidating to do so, have a family member or trusted friend help be your advocate.
Some hospitals have programs with navigators that will help patients figure out the next steps, while other patients will have to navigate more on their own. Dr. Goldman recommends the Fertility Scout as a good place to begin locating fertility services in your state.
See what your insurance covers
If you are fortunate enough to be at a hospital that has a team of people to help you navigate this or are already working with a reproductive endocrinologist, they can often take care of insurance issues for you. If not, it may require some initial calling on your own. But understanding what your insurance company may or may not cover can help patients navigate the next steps.
Seek financial assistance
Organizations across the country are working to provide financial help for fertility preservation, including the Chick Mission, which offers the Hope Scholarship. The nonprofit has joined with fertility partners in New York, New Jersey, Illinois, Colorado, California, and Texas who are able to get a response to patients within 24-48 hours to approve a short application to receive the grant. The Chick Mission says it has given 159 scholarships to date and aims to give out 100 scholarships in the next year through fundraising efforts.
There are other organizations supporting individuals, too. Team Maggie for a Cure offers help to those 15 and older, Livestrong also provides financial assistance, and so do local organizations. Fertility doctors typically also have information on where patients can seek help.
These grants really make a difference. Roshni Kamta was the recipient of the Hope Scholarship when she 22 and diagnosed with triple-negative breast cancer with no family history. Through the help of her doctor, she was able to apply and receive a scholarship. But for her it was more than just the money. "I really felt like Amanda and the team [at the Chick Mission] understood what I was going through and helped me understand that cancer didn't have to impact the rest of my life," she says. Now in remission, Kamta is volunteering and continuing to spread the word, "I wish people knew cancer wasn't just about being bald and going through chemotherapy."