For Emily Rich, the path to parenthood first started in a sterile surgeon's office in a discussion to remove a tumor found in her breast tissue. "Within hours of being diagnosed with a rare and life-threatening illness, I had to shoulder the weight of whether or not I’d be able to carry a child—let alone wonder if I’d live to see them grow up." It's a decision many young women newly diagnosed with cancer have to make as some life-saving cancer treatments pose potential side-effects, like infertility.
Still, many women are not able to make that decision for themselves and for their family. Many begin treatment without a conversation about fertility from their provider. And all too often women are left without coverage from their insurance provider resulting in costs that can pile up to $40,000, in addition to the cost of cancer treatment. A disproportionate reality for women in low-income communities. Not to mention, many fertility preservation services now hang on the line in our post-Roe v Wade world.
In honor of Breast Cancer Awareness Month this October, we sat down with Rich to hear about her motherhood journey and why we all should be fighting for better access to fertility preservation treatments.
Read her story below.
Perelel: Would you be able to share a bit of your personal breast cancer story? When were diagnosed?
Emily Rich: I was diagnosed with a rare form of breast cancer at the age of 32 in early 2019, just a few weeks after moving to New York from Los Angeles. Our boxes weren't even fully unpacked yet when I found a lump one night as I was getting ready for bed. When I found a general provider, she insisted that the lump was nothing and to come back in six months if anything changes. I strongly requested to have a mammogram ordered so that I could put my mind at ease, as we have a history of breast cancer on both sides of my family. After a little convincing, she ordered the tests for two weeks later. And sure enough—after a mammogram, two ultrasounds, and a biopsy, I was diagnosed with breast cancer.
"I became the most important member of my medical team to fight this disease."
I think back to the days leading up to that diagnosis, the terrifying hours between "we'd like to do a biopsy" and "we have some unfortunate news," and I have such competing emotions: sadness for the fear I felt and also immense gratitude. My heart breaks for every woman who has ever had to look her own mortality in the eye. It’s a terrifying headspace to be in. But in those moments, as scared as I was and as chaotic as each minute felt, I was also never more connected, in-step, or acutely aware of my body and its ability to protect me: For bringing to my attention something that wasn't quite right; for instilling in me the confidence and persistence to talk to my doctor about it; and ultimately, for preparing me for the fight of my life. With this gratitude also came a deep appreciation for my empowered ability to advocate on my own behalf. I became the most important member of my medical team to fight this disease.
P: How did treatment unfold for you?
ER: Immediately after I was diagnosed, I met with a breast surgeon to discuss my first steps of treatment. First, we would perform genetic testing, which would help determine which surgery I would need to have. Then after surgery to remove my tumor, I had 25 rounds of radiation treatment and later was put on a five year regimen of an estrogen modulator, Tamoxifen, which reduces my risk of recurrence significantly, but not without its own special side effects. It was in between surgery and radiation that I preserved my fertility with IVF.
P: Did any of your doctors speak to you about fertility at the time?
ER: My surgeon did. In fact, on day one of my diagnosis before she even talked about my surgery she was insistent that we speak with an onco-fertility specialist about preserving my fertility. I hadn't planned on freezing my eggs or embryos and—to be honest—I was nervous about the process. I was looking at a long and uncertain road ahead of cancer treatment. Did I really want to put my body through even more chaos? Especially for something my husband and I hadn't really talked that much about yet.
Looking back, I am certain we made the right choice in saying "yes" to fertility preservation. My treatment didn’t significantly impact my reproductive organs, with the exception of Tamoxifen, the effects of which mimic menopause. But there were a few other reasons we chose to undergo IVF using our frozen embryos to get pregnant. Both my husband and I are cancer survivors, so knowing that we had 24 healthy embryos that were all genetically tested gave us assurances that we wouldn’t have had getting pregnant on our own. We also knew that we wanted to start growing our family while I was still in my five year treatment regimen, which would require me to take a one year break from my medication. With a crunched timeline, we knew we’d need to get pregnant right away and being able to use one of our embryos took a lot of pressure off of us.
P: Did you know you always wanted to be a mother? How did you feel about motherhood once you received your diagnosis?"I've always wanted to be a mother. But in the moments when it was all on the line, I had never wanted it more. "
ER: I always knew I wanted to have a family. But in those moments when it was all on the line, I had never wanted it more. Unfortunately, too many women like me are denied that hope. That dream is crushed when insurance companies deny or delay coverage for women facing cancer, swaying them to forego fertility preservation because of the seemingly endless and unforgiving barriers.
P: Why is it important to bring awareness to creating access to oncofertility services?
ER: The fact is, more and more young people are surviving cancer, but the required treatments can confer life-altering, permanent side effects, including infertility. Before I was diagnosed, I didn’t think about how a cancer diagnosis would affect my job, my relationships, my identity, my self-esteem, my finances, and my path to parenthood. This is the other side of cancer that most people don’t see. When you hear the word “cancer,” a lot of people think chemo, radiation, medication and surgeries. But when you pull back the curtain, you learn that cancer is actually so much more.
"I had to shoulder the weight of motherhood without even being pregnant."
Breast cancer didn’t just affect my breasts. It affected every other part of my life. A big part of that was how I saw myself as a mother. Within minutes of being diagnosed, I had to shoulder the weight of motherhood without even being pregnant. I had to have deeply emotional, brutally honest, and exhaustive, hard conversations with my then fiance, now husband, around what our path to parenthood would look like in a moment when every other ounce of focus was directed toward my survival and the obstacles I’d have to overcome just to get there. What would we do if it didn’t work? What would happen to the embryos if we didn’t end up together? Would I even survive cancer to become a parent? Preserving our fertility was the best chance we could give ourselves to have a future family but it came with overwhelming emotional, physical, and financial costs.
"Over 50 percent of women who are diagnosed with cancer across the country are not informed about what they can do to preserve fertility before undergoing treatment."
For so many women facing cancer, this is not even part of those initial conversations with their care team. In fact, over 50 percent of women who are diagnosed with cancer across the country are not informed about what they can do to preserve fertility before undergoing treatment.
Even worse, the astronomical costs to preserve fertility are often enough to dissuade a cancer patient from exploring this as part of their treatment plan, leaving them with limited options to start a family later on down the road. Early on in this process, we learned that we were the exception to a systematically biased rule. We were lucky because we had fertility benefit coverage through Progyny, which covered the cost of nearly every part of the IVF process. But these treatments can cost patients up to $40,000. Now, factor in cancer treatment costs and the insurmountable stress of having to make life-saving medical decisions and suddenly, $40k seems like a drop in the bucket, comparatively.
Further still, access to these benefits is even more limited for women living in low-income communities. This is an institutional problem and one that needs to be fixed—now.
Once you have had cancer, there isn’t enough exercise or positivity or chocolate in the world that can unring that bell, that can erase the physical and psychological devastation that often goes hand-in-hand with submitting your body to the life-saving treatments required to survive. But you meet people along the way who give you hope, who lift you, love you, and lead you to the new person you are becoming.
One organization is making sure all women affected by cancer have access to fertility preservation: Chick Mission. I joined the Peeps Board of Chick Mission to raise money for women facing a cancer diagnosis to help preserve their fertility. This organization is wholeheartedly dedicated to making sure every woman has access to this option as part of their cancer care.
ER: Don’t take advice. Everyone will want to give it but trust your gut and lean into your community. Find your people, work with your doctors, and speak up for your body. You are the most important member of your medical team. But everyone, and I mean everyone, experiences cancer in different ways. There is no one way to find your way through it.
P: Where are you in your motherhood journey today?
ER: I have a wonderful 8-month-old baby boy named Myles. He is pure joy. And we hope to grow our family soon!
Meeting me as a mom. I look at my son and think to myself: Three years ago, you were a dream I wasn’t sure would come true.
Stepping into motherhood has been wild. I have to say, pregnancy and motherhood are not easy. And pregnancy and motherhood after cancer bring their own challenges, too. Some days, I’m navigating survivorhood as a mother. And other days, im navigating motherhood as a survivor. But I think that’s what a lot of us feel like, right? So many identities and emotions all at once. Some are easier. Some more complex. Some make you want to cry for no reason. Some make you want to cry for every reason.
"Some days, I’m navigating survivorhood as a mother. And other days, im navigating motherhood as a survivor."
When I became a mother, my heart cracked open and became more of a prism with a whole spectrum of identities beaming from this new light in my life. They all work together to make up who I am and I am learning how to love them all.
Perelel is proud to support Chick Mission in their work to provide more women with oncofertility services and lasting change in legislation. This October in honor of Breast Cancer Awareness Month, we'll be donating a percentage of all proceeds to the organization.
This article is for informational purposes only. It is not, nor is it intended to be, a substitute for professional medical advice, diagnosis, or treatment and we recommend that you always consult with your healthcare provider. To the extent that this article features the advice of physicians or medical practitioners, the views expressed are the views of the cited expert and do not necessarily represent the views of Perelel.