Fertility Discussions Help Cancer Survivors Preserve the Next Phase of Their Life

About a week after his wedding in June 2021, 31-year-old Andrew Garcia received a diagnosis of rhabdomyosarcoma (a rare cancer that forms in soft tissue) after what was initially an evaluation of a cut on his hand. After the diagnosis came a whirlwind of discussions about treatments he would need, including surgery, chemotherapy and radiation.

“It felt like life stopped for me,” he recalls. “I didn’t feel like there was much I could do.”

Before treatment started, his oncology team discussed fertility preservation and he was referred to a fertility clinic.

“At that time, fertility was the last thing on my mind,” Andrew says. “I didn’t realize that chemo could make me infertile.”

He successfully completed treatment and continues with routine observation to watch for signs of cancer recurrence. Now he and his wife, Cassie, both of Alexandria, Virginia, are trying to pursue the next phase of their lives — parenthood.

“We grieved the beginning of our marriage,” Cassie shares. “We didn’t get to take a honeymoon yet. The first year he was sick; I was his caregiver, there was work. Ultimately, it has brought us closer together.”

After completing treatment for a cancer diagnosis, survivors may feel they have moved beyond one of the most difficult seasons of life. However, for many, the end of treatment marks the start of a new struggle: the path to parenthood. A cancer diagnosis and subsequent treatment can leave long-lasting side effects, making conception a challenge, and for some survivors, an unexpected consequence.

Many survivors struggling with fertility feel like cancer has taken one more important thing away from them — a sentiment echoed by the Garcias on their journey to parenthood.

Cancer Treatment and Infertility

Fertility can be affected by many factors including type of treatment received, baseline fertility status, age and other medical conditions. The exact number of people living with infertility due to cancer treatment may never be known but has become more common with cancer cure rates increasing over the years.

Cancer treatments do not universally cause infertility, but many can affect fertility. At the time of diagnosis, a patient may not even be thinking about fertility, or how this health status change could affect the prospect of parenthood. This is especially true in instances of aggressive cancer that requires quickly starting chemotherapy.

Surgery, radiation, chemotherapy and hormonal treatments can lead to infertility for men and women, depending upon their diagnosis. For example, if surgical removal of reproductive organs, such as the ovaries, uterus, cervix or testicles, is required, fertility can be permanently affected.

Infertility can also result from radiation treatments provided in the pelvic region.

Additionally, chemotherapy medications or hormonal treatments may temporarily or permanently stop egg production and induce menopause in women. In men, chemotherapy is known to stop or reduce sperm production.

Fertility Discussions

Unfortunately for many, there is no discussion of fertility before treatment starts, and it becomes something else for which those living with cancer, as well as survivors, must advocate for.

Experts agree that fertility preservation discussions should be happening from the beginning and continue through treatment and survivorship.

Adriana Sosa, 41, of Castro Valley, California, recalls only a brief discussion about fertility when she received her breast cancer diagnosis in 2015. At the time of her diagnosis, she had a 3-year-old son.

“My oncologist was worried because I was so young and had just one child,” she says. “He talked about, what were my plans for the future? Did I want more kids? He was asking questions I didn’t know how to answer.”

She recalls that she was more focused on surviving breast cancer for the sake of her son. “I have to be fine for him. If I can’t have kids again, so be it.”

Sosa began treatment, which included hormone therapy and surgical removal of her ovaries. Her son is now 12, and at times she wishes she had asked more questions about how she could have preserved fertility.

Her advice to others facing a comparable situation is: “Think out loud. Whatever is in your head, say it. You’re the only one who can advocate for yourself.”

Dr. Pascale Salem, a medical oncologist at SSM Health St. Joseph Hospital in Lake St. Louis, Missouri, makes a point of having conversations about fertility when discussing treatment options with patients. She recognizes the importance of patients being fully informed about what can happen and wants to do her part to support fertility preservation where possible.

“There is a pressure for people to start chemotherapy as quickly as possible,” she explains. “But there is time to let fertility preservation take place.”

These conversations take place as often as needed for the patient to feel comfortable with the plan and meet directly with experts in this field. She wants patients to have the opportunity to ask questions and have time to seek fertility preservation assistance.

Without adequate conversations between oncologists and their patients, there can be upset and struggles as someone transitions into cancer survivorship and wishes to start a family.

Jessica Gorman, an associate professor in the College of Public Health and Human Sciences at Oregon State University in Corvallis, states that many young cancer survivors “are unaware that their cancer treatment was going to affect their fertility. They often state that they weren’t well-informed about their fertility options.”

Gorman also discussed the impact infertility has on mental health, especially for women, given societal expectations of motherhood. She says cancer survivors have told her that “the idea of not having kids is as hard as, or even harder, than getting the cancer diagnosis. It’s a huge loss.”

Fertility Preservation Options

Options for fertility preservation and timing for these interventions can be different for men and women. Depending on the cancer diagnosis, there may not be much time for prioritizing fertility preservation.

Dr. Akanksha Mehta, a urologist at the Emory Winship Cancer Institute in Atlanta, understands that time is pressing in such situations. She works closely with the Emory Reproductive Center to preserve fertility for cancer survivors.

“When I get a referral, I’ll see that patient as soon as possible. I’ll either see him in person, in the office or with a telemedicine visit. I like patients to understand how the process works,” she says. “Someone needs to continue to follow them even after treatment is done. Many treatments can lower testosterone, and someone needs to follow that as well.”

Mehta’s patients are men, and her approach to fertility preservation includes a recommendation to have one or two sperm deposits frozen for future use. Sperm quality is the best when the sample is collected before starting chemotherapy medications.

“Fertility should be a consideration from day one,” she adds.

For women, the process is often more complicated and usually requires additional weeks of planning.

Egg harvesting from the ovaries may be recommended to help preserve fertility. This is typically done with injections of hormonal ovarian stimulation medications. Hormone levels and the number of egg follicles are monitored with regular ultrasounds. When the follicles reach the appropriate size, a trigger shot is administered, allowing the eggs to be released and harvested a few days later. The eggs can then be fertilized with sperm to form embryos for frozen storage, or they can be frozen without being fertilized.

Previously, egg harvesting could take months, as it needed to be timed with the natural menstrual cycle. With newer medications and procedures, the process now takes two to three weeks.

Although the process is quicker, the cost of the procedure and storing the frozen eggs or embryos can be prohibitive for many patients. Everyone’s financial responsibility can differ, and it can cost tens of thousands of dollars for fertility preservation.

The price tag associated with fertility treatments has been an issue faced by the Garcias. They both have insurance that helps cover the cost of some, but not all, medications and procedures associated with in vitro fertilization (IVF).

“Insurance doesn’t cover everything,” says Cassie. “It covers 50% of the cost of the embryo transfer but doesn’t cover the cost of thawing the embryo. It feels like insurance companies say they cover infertility treatments, but then pick and choose what they want to cover. They don’t cover the cost of moving the embryos from one fertility clinic to another, or the monthly cost of storing the embryos.”

At this time, they have spent over $20,000 on their journey to parenthood.

Additional fertility preservation treatments may be offered, such as surgically moving the ovaries to the side to decrease their risk of radiation exposure (called ovarian transposition), or even removal of ovarian tissue to be frozen and transplanted later when treatment is finished. Ovarian cryopreservation is still experimental, but may be a treatment choice for those who receive diagnoses during childhood.

Maresa King, 35, of Irvine, California, struggled with infertility during and after treatment for breast cancer. She and her husband decided to go through IVF after understanding the effects chemotherapy would have on her fertility. But because she was on disability, only making 60% of her annual salary, they decided to take out a loan to cover the costs.

However, her treatment and the cancer were so aggressive that the oncologist only gave her one shot at it. They were able to retrieve 12 eggs; however, she was told the quality was “really bad.” Three were able to be frozen.

After undergoing IVF treatment, during a six-month break from cancer treatment, two were successful and King was pregnant with twins.

Unfortunately, due to pregnancy complications, only one lived.

“After that, the doctor told me, ‘You’re done. You can’t have kids on your own. The possibility of ever having kids on your own is about 1%,” she says. “We counted our blessings and understood that was our only shot.”

But it was not. With a 1% chance, King was able to conceive naturally. Her pregnancy went well, and she has since given birth — however, one lasting side effect she did experience from chemotherapy was shortness of breath.

“I was very shocked and in disbelief that I was actually pregnant. Then anxiety took over because I didn’t believe things would work out and I would go on to have a healthy pregnancy, especially with everything that happened with my first pregnancy. Eventually all I had left to do was have faith and pray that God would allow me to get through it and bring to this world a healthy baby,” King shares.

For some cancer survivors, the path to parenthood may be difficult. There may be multiple options available, though, for those who wish to become parents. In addition to procedures such as IVF, other options can include surrogacy, IVF with donor eggs or adoption.

During this journey, it is important for cancer survivors to be their own advocate. Survivors will need the support of their oncology team not only to treat their disease, but also to live their life beyond cancer while on the path to parenthood.

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