Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.
Fighting for Women’s Fertility: How Amanda Translated Her 3 Cancer Diagnoses into Empowerment
Did you know that undergoing cancer treatment can impact your fertility? Fertility refers to the ability to conceive a child and, for women, to carry that child throughout the pregnancy. The American Cancer Society reports that cancer treatments, such as surgery or chemotherapy, can impact reproductive processes and make it more difficult to conceive or carry a child. However, some individuals undergoing treatment are not told about the fertility-related risks by their medical team.
In 2014, Amanda Rice never knew that this would be an issue that she would care about so deeply. She was in her early 30s, working in finance, and driving fearlessly forward towards her goals. Everything changed when she was diagnosed with breast cancer for the first time.
Now a three-time cancer survivor, Amanda is passionate about raising cancer awareness, supporting other survivors through her advocacy work with Survivorship Today, and advocating for the fertility rights of female cancer survivors. She shares:
“I was told about the impact of cancer on my reproduction. Less than 50% of doctors tell patients about this risk. I’m incredibly committed to creating a world in which every person diagnosed with cancer has the option to start their own biological family and is informed about what their treatments mean for them.”
Amanda recently sat down with Patient Worthy to discuss her experiences with breast cancer and melanoma, the challenges and rewards of survivorship, and her amazing work with The Chick Mission.
Back to the Beginning
During a vacation in 2014, Amanda was having a blast enjoying the sun, sand, and warm ocean breeze. But while she was removing her bathing suit later that day, she noticed something concerning. Her bathing suit top was dotted with spots of blood.
Out of curiosity—and to ensure that everything was alright—Amanda visited her OB/GYN as soon as she was home. She wanted to know if she should be worried or what she should be doing to stop any residual bleeding that might occur. The doctor was unflustered, Amanda says:
“I was dismissed and told that I was in my 30s with no family history of any issues like breast cancer, so there wasn’t any reason to worry. That wasn’t an acceptable answer to me. I wanted to know what was going on with my body. I kept pushing and pushing for answers until she referred me for a mammogram.”
After the mammogram, Amanda underwent multiple tests, from needle-guided biopsies to sonograms. Eventually, she was diagnosed with breast cancer. She shares:
“I didn’t have the traditional lump. But I pursued these tests because I needed to follow the crumbs pointing in that direction. Young adult cancer statistics are increasing in numbers. Nobody can deny that. Doctors need to be trained better for when younger individuals come in with questions or concerns. At the same time, we need to be the squeaky wheels. It’s our responsibility as the CEOs of our own bodies to speak up.”
The Process of Self-Advocacy
At first, Amanda was stunned to hear her diagnosis—and even more stunned when her oncologist recommended chemotherapy and a mastectomy. She wasn’t sure if that was the path that she wanted to pursue, so she decided to seek out a second opinion. Amanda explains:
“I never take the first offer ever, so I realized that I needed to speak with another doctor to see if they’re aligned, and if they were, that would have given me confidence. It’s hard sometimes to pursue a second opinion because you want the cancer out of your body and you don’t want to wait. But after seeking out that second opinion, I learned that I wouldn’t have to do chemotherapy the first time around, which was best for me.”
Her ability to speak up for herself and to pursue a second opinion represents an important aspect of the patient experience: advocacy. It can be difficult to be your own best advocate, especially when you’re speaking with someone who is fully trained—and you’re sitting in the room in a thin paper robe. Yet, Amanda explains, it’s crucial to step up and becoming your own advocate when your body is trying to tell you something, a concept she discussed in a video she recorded with Survivorship Today, an initiative from Bristol Myers Squibb that aims to share stories of people across the country who have been affected by cancer and advance our collective understanding of what it’s like to live with the disease today to inspire more action and better support. She shares:
“If your doctor dismisses you, find a better doctor. And if you need help being your own advocate, bring a support system to your appointment who will lift you up. I once brought my best friend to an appointment where I had 20 questions listed on a paper. I got to question six, crumbled, and the doctor left. My friend told me I wasn’t speaking up for myself and dragged the doctor back into the room. You’re not a statistic. You’re a human being and our bodies are different. The sooner you recognize that your body is your body, and you need the care that’s best for you, the better off you’ll be.”
A Bump in the Survivorship Journey
About a year after her breast cancer diagnosis and treatment, Amanda noticed a suspicious looking spot on her bicep. She flagged it to her dermatologist. After running some tests, the dermatologist discovered that Amanda had melanoma, a potentially dangerous form of skin cancer. Luckily, the melanoma was surgically removed with clear margins.
But as soon as Amanda felt like she was finally in the clear, finally out of her cancer journey, another challenge hit. She discovered a lump under her armpit while doing her post-mastectomy breast exam. Unclear whether it was a recurrence or a new cancer, doctors treated it aggressively: chemotherapy, radiation, and surgery.
Her recovery was marked by significant mental health struggles—another aspect of the survivorship experience that is often under-discussed. She explains that during active treatment, everyone is on the same page: committed to improvement, working through the days and getting to where you need to go. But when you reach the stage of survivorship, she says:
“You’re just done—that’s when your mind and spirit catches up with what just happened. You’re a different person. You’ve faced your mortality, the ultimate vulnerability. You no longer feel joy from the same things. It just really knocks you down. I had never felt anxiety before cancer and all of a sudden, I felt like I was hit with a freight train. People have always seen me as ‘the strong one,’ but I had to admit that I was feeling these awful things: suicidal thoughts, deep depression, questions about why I was still here. My life didn’t feel like my life. I felt ashamed, especially because people kept telling me that I was cured and I was a survivor. Doctors don’t always want to flag these things. I’m on an antidepressant now because I was lacking serotonin. I want people to know that’s okay. Survivorship can be very complicated, and I want to be clear that these are the struggles that many survivors deal with.”
She adds that part of the reason why she chose to share her experiences with Survivorship Today was to highlight her vulnerability and to show others that they’re not alone, explaining:
“Words like ‘battle’ or ‘winning’ can put unnecessary expectations on patients. You don’t have to feel like a warrior. You survived and are hanging on by a thread right now. That’s okay. There’s help. I just find it so important for people to see that these feelings can happen.”
Founding The Chick Mission
Amanda was 39 years old at the time of her third diagnosis. She had fertility benefits through her employer that she wanted to use, but when she attempted to, she hit a roadblock:
“The quality and quantity of my eggs suffered during treatment, and I’m in early menopause. Leveraging those fertility benefits would have given me some comfort because so much is taken from you on this journey. But I didn’t qualify because my insurance company said—and this is a literal quote—that ‘I wasn’t infertile yet.’ That was probably the worst day of my entire cancer experience. Their standard definition is that you have to try for six months without success before you can qualify for IUI and then have three failed rounds before IVF. But you can’t try to get pregnant when you’re about to start chemo. It made no sense to me.”
Amanda chose to turn her frustration into action. She found an amazing survivor who was working to change the language around insurance coverage and, driven to make a difference, submitted a letter of support.
Sharing her story was cathartic—and even more so when the law changed so that women with iatrogenic infertility (infertility caused by a medical procedure like chemotherapy or radiation) no longer have to jump through hoops to receive support. Since that point, 16 states have changed their law; Louisiana, Montana, and Kentucky will join the charge in 2024.
Wanting to ensure that every young woman with cancer had the opportunity and resources to preserve their fertility—which is typically fairly expensive—ahead of life-saving cancer treatment, Amanda decided to found The Chick Mission , a 501(c)(3) nonprofit that advocates for legislative changes, educates patients and providers, and offers need-based grants to women to manage the sheer cost of egg-freezing. Currently acting as a resource in six states, The Chick Mission recently raised $1M at their gala for 100 grants next year. The Chick Mission also has a collegiate education program where they teach Fertility 101 to medical students, with survivors sharing their experiences of discovering their cancer and the fertility impacts.
Ultimately, Amanda shares:
“I want every young adult with cancer to understand that they have a choice. Ask your doctor about the impact of treatment on your ability to become a biological parent. Get that dialogue up and running. I don’t want anybody to get the news that they’re infertile without the conversation ahead of that. If you need help, if you need resources, reach out to us. We’re building coalitions in states across the country. We can be our own advocate from our bodies to our legislators. And remember: your voice matters.”
