Stories from Hormone Health

A Non-Hodgkins lymphoma survivor shares her cancer and IVF journey

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Liya Shuster-BierApril 27, 2020

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Photos: Courtesy of Liya Shuster-Bier; Art: W+G Creative

The ski trip to Utah wasn’t supposed to be this way. It was just supposed to be a fun, extended weekend trip with my husband. We were planning to celebrate me getting my dream job six months after graduating from business school, his placement in a competitive cardiology fellowship program, and our new life in New York City. It certainly wasn’t supposed to be the day I was diagnosed with Non-Hodgkins lymphoma.

I had started experiencing intense chest pain on the flight to Salt Lake City, so my husband and I went straight to the emergency room as soon as the plane landed. After six hours of various tests, the emergency room doctor did a CT scan to see if I had a blood clot from the flight, but instead, what he found was a 10-by-8 centimeter tumor between my lungs, right behind my heart.

This was not news I was prepared to hear. I was 29, and my husband and I had been talking about starting a family together. Suddenly, it felt like my whole future was in doubt.

Making the decision to do IVF

Non-Hodgkin’s lymphoma is one of the most common cancers in the U.S., accounting for roughly 4 percent of all cancers. But that statistic is a bit deceiving. There are 30 types of Non-Hodgkin’s lymphoma, and I was diagnosed with a rare one, primary mediastinal b-cell, which afflicts about 3,000 young women a year. It’s a type of cancer that starts in white blood cells, which are crucial for immune health. For me, treatment would involve aggressive chemotherapy and immunotherapy, which would take 18 weeks. In the process, my body would be put into menopause (because chemotherapy can damage the ovaries), meaning I would likely no longer be able to conceive naturally.

That was a problem, because my husband and I knew we wanted kids. We were ready—I had even taken out my IUD six months earlier.  I knew that one option I had would be to freeze my eggs before I began treatment; my friend Lindsay Beck, a cancer survivor, had started a charity called Fertile Hope that encouraged cancer patients to advocate for their own fertility preservation. It was her work I thought of as I sat in a cold doctor’s office back in New York City.

I understand that not every woman with cancer who wants kids may want to do IVF. Some may choose to become a mother in another way, such as adopting. Still others may not have the luxury of choice because they can’t afford it or they’re already too sick to undergo fertility treatments. I was fortunate that I could. For me, I instinctively felt that IVF was the right choice for me.

Starting IVF before treatment

Because the tumor was growing so rapidly, I only had enough time to complete a single egg retrieval and freezing cycle. I was fortunate that Memorial Sloan Kettering, where I had set up my oncology care, speedily connected me with a reproductive endocrinologist at Weill Cornell Medicine; without their fast action, I might not have had time for even that single cycle.

I was also fortunate that my insurance was covering the majority of the process (some states require insurance companies to cover egg freezing for people like me who are losing their fertility to cancer) and the remainder was being covered by a Livestrong scholarship. They are covering the freezing costs of my eggs for up to five years. Had I not been fortunate to have coverage in these ways, the process would have cost me $30,000.

Going through IVF was rough. I spent 10 days before the egg retrieval appointment giving myself multiple daily hormone injections to stimulate egg growth—and the shots had to be timed perfectly. I also saw the doctor every day to make sure the egg follicles were growing properly. The last day, the doctor performed the egg retrieval, where they stuck a needle through my vaginal wall and suctioned the eggs out of the ovarian follicles to store and freeze. Fortunately, I was under sedation for that.

I was nervous about the whole process, but the evening before my retrieval day, there was actually an enormous fertile lunar moon. I saw it as a good omen and it most certainly was; I had 39 eggs retrieved that day, which is more than twice what my doctor was aiming for. Now that my eggs were safely frozen, I could focus on cancer treatment.

A major setback

Two weeks after I finished freezing my eggs, I started cancer treatment. Physically, chemo and immunotherapy took an immense toll on my body. I had six rounds of treatment, each being three weeks long. During the first week of each round, I would receive the actual treatment in the hospital. A nurse would hook me up to a bag of chemotherapy drugs that would come home with me in a fanny pack. This treatment would run continuously for 36 hours, and then I would come back to the hospital for them to unhook me from it. The next week, my body would become neutropenic, which meant my white blood cells would dip and I would basically have no immune system, so I’d have to be very careful about seeing anyone that even had the sniffles. The third week was spent recovering.

Often I was too tired to leave the couch. But my family and friends were amazing, coming over just to sit with me. I’m so grateful for them, and my husband who was there for me every step of those long, 18 weeks.

It was draining emotionally, too. I started seeing a therapist. I had to get comfortable with the fact that I might die. In turn, that made me think about how I wanted to make my living days wonderful and joyous. I wanted to savor the days I did have. But of course it’s difficult to live life to the fullest when you have cancer; there are limitations to how you can genuinely enjoy yourself when you’re constantly nauseous and exhausted. Mostly I just treasured the time I spent with my husband, family, and friends, just sitting and talking, being together.

I finished treatment in June 2018 and was considered to be cancer-free until a checkup in October 2018. My doctor did a CT scan, which showed an ominous mass in my chest. In order to make sure the mass wasn’t cancerous, they had to do a biopsy, but because the mass was so close to my heart, it meant an invasive surgery that could be life-threatening. The surgery was scheduled for a few weeks later. After the surgery, my doctor told me the news I was dreading: My cancer was back.

The end of one chapter, the start of another

I started treatment all over again, this time a more aggressive form of chemotherapy, a different immunotherapy. After nine weeks of that intense portion of treatment, I completed 20 sessions of radiation and had an autologous stem cell transplant, which had me in quarantine for 100 days last spring. I also focused even more on my mental and emotional health, seeing my therapist more often and starting reiki, acupuncture, and meditation.

My therapist suggested my husband and I adopt a dog, so we did, a mini labradoodle named Chloe. She’s become our little baby, someone the two of us can take care of together as a couple. It’s a change from him taking care of me or me taking care of him; Chloe we take of together. She also just brings us so much joy and that alone has been incredibly healing.

On January 22, 2019, I officially went into remission—just over a year after my initial diagnosis. When we got the news, I literally leaped out of my chair and hugged my oncologist. It was surreal. After spending the past two years coping with the idea of dying, now I could focus on the idea of living.

Before my cancer diagnosis, my husband and I were ready to start a family, and we still have that dream. Our doctors advise waiting 24 months after being in remission, so we have about 18 more months left before we have the all clear. I’m 32 years old now and a lot of my friends have started having babies. It’s hard that I could be experiencing my own child’s first steps or birthdays right now, but that’s been put on hold.

My husband is a cardiologist and is working on the front lines fighting COVID-19, so we can’t be together physically right now. I’m isolating apart from him, with Chloe. But when the time is right, we know my frozen eggs are there waiting for us. There is so much life out there for me, for us. And I’m really excited to live it, with my family.

As told to Emily Laurence.

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