Part 1: I was diagnosed with breast cancer at 28
There it was. An undeniable, hard, one-inch lump, just above my left nipple.
October was Breast Cancer Awareness Month in the United States. I sat down with my friend, Kelsey Renning for an intimate and honest conversation about how she navigated an early breast cancer diagnosis and fertility preservation options when the odds were stacked against her. This is part one of two.
Kelsey’s response to being diagnosed with breast cancer at just 28 years old was totally relatable. She'd done all the right checkups. Without a family history of cancer, or any chronic health conditions, this was the ultimate life curveball.
Before the gut-punch diagnosis, Kelsey, who is a pediatric nurse, was loving her job, traveling the world, climbing mountains (literally), living her life. Then, all of a sudden, she had to grapple with questions about her mortality, her fertility, and her future.
“Doing a self-breast exam was definitely not part of my usual routine,” she remembers. “I just didn't think it was something that necessarily applied to me, because of my age and lack of any obvious risk factors." But there it was. An undeniable, hard, one-inch-in-diameter lump, just above her left nipple.
Her first thought was these things are usually benign (not cancerous or cause for concern). But of course, one can’t just rely on your intuition when it comes to these things. Without much alarm, she called and scheduled an appointment to have it looked at. A visit to the breast cancer clinic across the street from the children’s hospital where she worked would be the beginning of a life-changing set of events.
A tidal wave of change
In the United States, women under the age of 40 (without risk factors) do not have mammograms covered by health insurance (1). For women like Kelsey, who was only 28 at the time, the issue becomes about 'likelihood', rather than real-life need. So, instead of a mammogram, the first step for her was an ultrasound of her breast.
It was an agonizing hour-long wait for the radiologist: “She came in, sat across from me, and in one breath said: ‘These findings are probably cancer’ and then just walked out of the room. She didn’t ask me if I had any questions, didn’t ask how I was feeling, or anything.”
Left alone in an empty office with a zillion unanswered questions, she was sent for a mammogram (now her insurance would cover it, at least) and a biopsy of the tumor that same day.
“Even though the physician who did the biopsy reassured me, based on her professional experience, that the lump could still be benign, I knew I had to brace myself for what felt like a tidal wave of change that could occur,” she recalls.
Then came the phone call from the doctor: “I was wrong… you have stage 2 breast cancer.” Quickly followed by, “The first thing I want to tell you is that you’re not going to die, so get that thought out of your head”. More easily said than done.
Kelsey called her parents and sisters. “They told me they would be with me the whole way. My dad told me if I lost all my hair he would shave his head in solidarity. Lots of tears. It was the most complete and unconditional form of love and support I’ve felt from my family. Even though there was a lot of underlying fear, they wanted to be strong for me.”
She felt like she was in good hands with a team of experienced oncologists, and the outpouring of support and comfort* from friends and family helped get her through the initial shock waves.
United States health insurance is notoriously lacking in terms of coverage and payment. Kelsey’s total insurance bill at the end of treatment was over half a million USD (yes, you read that right).
She started a GoFundMe crowd fund to help offset the flurry of medical bills she received, and to help cover the out-of-pocket costs that her insurance wouldn’t cover. Kelsey knows how lucky she was to have had access to state-of-the-art treatment: “I felt extremely grateful I had health insurance at the time of diagnosis, and that I had people around me who could give financial support. I have a lot of empathy for those who go through this and don’t have the means.”
Facing chemotherapy at her age meant Kelsey was also confronted with having to consider what it would mean for her fertility and her dreams of having a family in the future.
"I always felt like motherhood is my purpose and calling," she explains. But undergoing chemotherapy would potentially compromise her chances of getting pregnant in the future. Chemotherapy can either temporarily or permanently affect ovarian function, which can impact the ability to become pregnant (2).
Kelsey met with an oncofertility doctor (someone who specializes in fertility for people with cancer), who was optimistic about her case. Given her age, it was unlikely that the chemotherapy would permanently damage her fertility, but there were no guarantees. So she was counseled on the potential options. “I could freeze eggs or embryos, but I needed to make a decision quickly.”
More than just medical decisions
After being diagnosed with breast cancer on a Monday, Kelsey was at the fertility clinic by that Wednesday, and she had until the end of the week to make a decision about her future fertility.
She left the appointment and discussed her options with her then-boyfriend. They had previously delayed the conversation about parenthood given his ambivalence about it. ”It all felt very rushed, we were suddenly thrust into this decision-making process about our future.”
What many people don’t realize is that embryos aren’t owned by an individual. With embryos, the partner has equal ownership. However, the egg-freezing route would give Kelsey full control over decisions regarding her eggs. These aren’t just medical decisions; they’re deeply personal, emotional, and obviously complicated decisions–especially if it’s the first time the question has come up.
Aware that the decision-clock was ticking, she made her choice. She began the egg freezing process (oocyte cryopreservation for fertility preservation**) (3).
To minimize any delays in starting her cancer treatment the fertility team rushed into action. Instead of waiting for the ideal timing in her menstrual cycle (as is typically the process for egg freezing), Kelsey began hormone injections to mature her eggs for retrieval through a process of immediate or random-start stimulation (3).
The team retrieved ten total eggs, but only seven were mature enough to freeze. “I mean, having seven eggs in the freezer certainly helped give me some sense of security and hope for the future. But I was about to embark on a year-long cancer treatment plan, so family planning was not high on my list of priorities. I didn’t know if seven eggs was the ‘right’ amount to have, but it was better than nothing. I felt like I just needed to survive this first, and then I can worry about that later.”
Kelsey’s story is continued in Part 2 here.
*Social and emotional support has been shown to be an important protective factor for breast cancer patients, greatly reducing distress, improving prognosis, and decreasing the long-term emotional impact of cancer treatment (4).
**Fertility preservation before chemotherapy has been shown to increase breast cancer survivors' ability to get pregnant after treatment, compared with those who do not opt for this route (5).