A cancer diagnosis and a decision about fertility – 03/09/2024 – Balance

Two weeks before her 23rd birthday, Roshni Kamta was diagnosed with stage 2 breast cancer. That was the first shock. The second came a few days later, when she discovered that the chemotherapy that would save her life could prevent her from having children.

Her oncologist said freezing her eggs would give her the best chance of a future pregnancy. But she would need to do this immediately, before starting cancer treatment.

Kamta, who had recently graduated from college and moved to New York for her first job, had never thought about whether she wanted to have children. And now, in the midst of dealing with a harrowing diagnosis, she also had to decide whether to have an expensive and demanding fertility procedure.

In just 48 hours, she began the fertility injections regimen to prepare her to harvest her eggs.

“I didn’t know if it was working, if I was doing it right,” says Kamta, who is now 27 years old. “I was so overwhelmed and stressed.”

Breast cancer is the most commonly diagnosed cancer in women of reproductive age; About 9% of new cases in the United States are in women under 45. These women tend to have the more aggressive types that require chemotherapy, which can damage the ovaries and affect fertility.

Typically, women are advised to wait at least two years after finishing chemotherapy to pursue pregnancy, and even then they may or may not produce healthy eggs. Additionally, many women also receive hormone therapy for five years or more after treatment, during which time they cannot become pregnant or are strongly advised not to.

As a result, the window of time for motherhood can shorten significantly, especially for women diagnosed in their 30s, when fertility begins to decline.

For women who are simultaneously navigating cancer and the egg freezing process, the journey can be emotionally and physically brutal, from dealing with insurance bureaucracy to mourning lost opportunities. Additionally, the ongoing debate over reproductive rights — and more recently, the Alabama Supreme Court ruling that frozen embryos should be considered children — is adding to the stress of cancer and fertility, with some women questioning whether they will be able to freeze their eggs or embryos.

RACING AGAINST THE CLOCK

The day Annie Holschuh brought her first child home from the hospital in August 2020, she was diagnosed with stage 2 breast cancer. At her first appointment, the oncologist asked Holschuh, then 37, if she and her husband had finished having children. “We had a five-day-old baby,” says Holschuh, who works in marketing in Milwaukee. “You can’t even understand it, you’re dealing with so many things.”

Monique James, a psychiatrist at Memorial Sloan Kettering Cancer Center who specializes in treating women of reproductive age, said this double whammy can be difficult for patients to reconcile. “You’re trying to save your own life and someone asks you to think about a future life that hasn’t been formed yet,” says James.

Some studies have suggested that the potential for infertility after cancer treatment may be more stressful than the diagnosis itself; For many women, the fear of infertility is second only to the fear of a recurrence of cancer.

Holschuh decided to freeze embryos with the hopes of eventually having a second child, but she worried that delaying chemotherapy to harvest her eggs — a process that usually takes about two weeks — could cause her cancer to spread. “You just want to get rid of it from your body as quickly as possible,” she said.

But for patients with early-stage breast cancer — generally defined as stages 1 to 3 — there is usually enough time to complete a round of egg harvesting safely, as long as they can begin the process quickly, says Hope Rugo, a research oncologist who specializes in breast cancer. and breast cancer treatment at the University of California, San Francisco.

CONCERNS ABOUT COSTS AND COVERAGE

However, preserving fertility before cancer treatment can be expensive. Although prices vary depending on the fertility clinic, a single round of egg or embryo freezing can cost up to US$15,000 in the US (approximately R$75,000 in current conversion). For someone facing potential financial trouble caused by cancer treatment, adding the surprise element of fertility treatment can make things even more challenging. “There is a real equity issue here,” says Rugo.

According to a spokeswoman for a national association of health insurers, in most states, the amount of coverage people can get for fertility treatments is determined by employers — unless states require it. As of January 2024, 16 states and the District of Columbia have passed laws requiring insurers to cover fertility preservation procedures for cancer patients. Even so, said Joyce Reinecke, executive director of the Alliance for Fertility Preservation, many people with limited coverage may still be denied.

Roshni Kamta dealt with these issues. A few days into the egg freezing process, Kamta discovered her insurance company wouldn’t cover it. She appealed the decision and was again denied. “I felt like no one was on my side, or validating that this horrible thing was happening,” she said.

Kamta received a grant to cover the cost of her egg freezing from The Chick Mission, a nonprofit that helps cancer patients preserve their fertility and advocates for more states to require fertility treatment coverage for cancer patients.

Even if a woman hasn’t yet decided whether she wants to have children after cancer treatment, “let’s give people the option,” said Amanda Rice, 47, a three-time cancer survivor who started The Chick Mission. “It’s not for cancer to decide, it’s not for insurance to decide. It’s up to us.”

A FEELING OF SOMETHING BEING TAKEN AWAY

For women who may have already sacrificed things like their breasts or their hair to cancer, it can feel particularly unfair to also deal with “grief and loss and mourning something more abstract,” says James.

Kamilla Linder, 34, a self-employed language teacher in Santa Cruz, California, was able to freeze her eggs in October 2023 with financial help from several nonprofit organizations. But her treatment will likely include five to 10 years of the estrogen-blocking drug tamoxifen, and Linder, who is currently single, worries about when and how she will turn those eggs into embryos.

Although a growing body of research suggests it’s safe to take a break from these hormone therapies to get pregnant, she can’t shake the feeling that something has been taken away from her. “I have this fear that there’s no way I’m going to have kids,” she said.

That sentiment has become more common since the Alabama Supreme Court ruling in late February, said Allie Brumel, co-founder of a nonprofit for people impacted by breast and gynecological cancers called The Breasties. She has heard from many community members concerned about what this means for their own frozen eggs and embryos.

“Those frozen eggs are my only option for having a biological child,” said Lindsey Baker, 39, a nonprofit consultant in Tucson, Arizona, who chose to have her ovaries and fallopian tubes removed in 2022 after finishing active treatment for breast cancer. stage 2 breast. “To think of the ramifications of politics taking this away from me, when I’ve already lost so much to cancer in my 30s, is heartbreaking.”

GETTING BACK SOME CONTROL

When Trish Michelle, 45, of Queens, New York, was diagnosed with stage 3 breast cancer in 2016, “no one, not once, mentioned fertility,” she said. Michelle, who was 37 and already a mother of two teenagers, quickly made the decision not to pursue it, a choice she often regrets. “At that point, you’re fighting for your life, you have to quickly triage what’s most important.”

James said the landscape around fertility preservation after a cancer diagnosis is slowly changing, with more professionals willing to engage in thoughtful discussions.

Her biggest tip for young female cancer patients is to “ask questions, ask questions, ask questions.” Request an immediate referral to a reproductive endocrinologist specializing in oncofertility. Ask about ways to connect with other cancer survivors who have preserved their fertility and about financial grants from organizations like Livestrong Fertility and the Heart Beat Program (in the US).

Also, talk to your oncologist about the impact of cancer treatment on your fertility, says Rugo. Ask about ways to mitigate its effects, such as temporarily shutting down your ovaries during chemotherapy.

Michelle, who now works for The Breasties, said that although she is proud to have fought for the mammogram that saved her life, she regrets not standing up for the option to have more children. “I let it be the dream that died,” she said.