After an ovarian cancer diagnosis at age 24, Nicole found hope for a future family through Livestrong Fertility.
by Paula Wielinski, BSN, RN
Nicole’s “Lucky Diagnosis”
Nicole was 24 years old, living in London, away from her family. She woke in the middle of the night with severe abdominal pain. At her family’s prompting, Nicole took an Uber to the hospital that night. After waiting in the emergency room until morning to be seen, doctors decided that she likely had mid-cycle period cramps and a mild cold or flu due to a low-grade fever. The physician admitted her for observation. After an ultrasound and labs, Nicole learned she likely had a large cyst and was sent home. She felt bloated and just sensed something was “off.”
Nicole missed a phone call the next day and was stunned to hear via voicemail she needed surgery immediately. To Nicole’s dismay, the return phone number was incomplete. Nicole called the general hospital phone number and was prompted to come to the hospital, where she would spend days waiting for an official cancer diagnosis.
The pain that originally woke Nicole and started the cascade of testing was determined to be her ovary twisting upon itself (ovarian torsion). Such torsions may happen when an ovarian tumor is present.
Nicole reflects, “I was told I had germ cell ovarian cancer — the specific subtype was an endodermal sinus tumor (EST), called a yolk sac tumor in the UK.” She would need surgery followed by chemotherapy five days a week. Knowing that she needed her family’s support, Nicole returned to Tennessee.
Nicole journaled her experience throughout the treatment process, “trying to keep [it] light-hearted and funny.”
December 23rd, 2018
“It has been two weeks and one day since I woke up in agonizing pain at 4 am, and I still hardly believe this is happening to me. You check Facebook every so often to see a friend of a friend’s brother or dad who’s been diagnosed with the ‘C’ word, but you never in a million years think it’s going to happen to you, especially not at the age of 24.
I’ve been telling people that I really went big for my quarter-life crisis, which to me is funny and helps me deal with everything I can’t control; however, I often find them looking at me sympathetically and saying, “Yeah, I guess so.”
“Backing up three to four weeks ago before it all began, I consistently complained that my stomach hurt. This I didn’t realize at the time, and with every passing pain, I thought hmm maybe a period cramp, maybe a potential food allergy. I’ll deal with it later. To make things worse, I have the chronic twenty-something bad habit of avoiding the general practitioner, dentist, gynecologist, bank, repairman or anything else that requires an appointment and a dose of effort. So with each passing moment, I’d voice, “Guys, I feel like I ate something weird” or “Man, my period this month is pretty horrible” never realizing that I was in fact complaining about the same, seemingly chronic pain. It’s easy to say now that I should’ve known better, however without the authoritative tones of my mom and stepdad, Rick, on the other end of the 4 am international phone call, I still would probably not have gone to the doctor, hospital, medical professional, or anyone who could help.”
Nicole’s early diagnosis wasn’t typical. Ovarian cancer is a tricky beast that may only present with mild, vague symptoms in the beginning. Its symptoms are often dismissed by women as period-related and may not be recognized, even by healthcare providers, as warning signs of ovarian cancer. Some symptoms to report to a physician include constipation, abdominal bloating, feeling full quickly at mealtime, pelvic discomfort, weight loss, or urinary urgency or frequency.
A Tight Window of Time
Chemotherapy can push women into early menopause and can damage ovaries either permanently or temporarily. Nicole explains the urgent timeframe, “My oncologist in the U.S. said I needed to start chemo right away. I was given one month to freeze my eggs before chemo. That’s it. I had one shot.”
Nicole’s insurance deemed egg harvesting and storage ‘experimental,’ meaning she would be financially liable for any such procedures. “The costs were enormous. Livestrong made the process quick and effortless.”
Nicole recalls the oncology nurse asking, “Have you heard of Livestrong Fertility?” The nurse generously contacted Livestrong on Nicole’s behalf. “Livestrong reached out to me the same day or the next day. I filled out an application and provided financial information. My caseworker, Gabriella, reviewed my information the same day. My medication was 100% covered.” Nicole was advised to contact Gabriella as soon as her next period started. “That would be go time,” she explains.
One week later, Nicole made the call. It was “go time.” She recalls, “My caseworker was amazing, and my medication swiftly came gift-wrapped to my door the same day, 6 to 7 hours later. It was still daylight. I have waited longer for Amazon packages!”
Nicole remembers the medications were all lined up in the box, ready for use. She explains, “If someone can take even one stress off your plate, one thing I didn’t have to chase or organize. They did it all for me!”
January 17th, 2019
“Woohoo I got my cycle. The cycle means things kick into gear very fast. My mom and I had the pleasure of driving through the dark fog this morning to make my FOURTH ultrasound at 8:15 am in Nashville. Thankfully the doctor has said that the hemorrhagic cyst has either burst, been replaced, or has morphed into a smaller simple cyst that is not estrogen driven, so operation fertilization preservation starts.”
Nicole recalls, “In the hospital, you rush to wait. But Gabriella kept checking in to see if I needed additional quantities. She was very quick to answer the phone, usually on the second ring. I have nothing but amazing things to say about Livestrong’s customer service!”
January 25th, 2019
“This evening I finished day 7 of my fertility drugs. Little bruises are starting to form on my stomach from the constant stabbing which have begun to match my “good vein” for blood withdrawals in my arm (in preparation for chemo). To be honest, it’s the first time I’ve felt truly hormonal since these injections have begun…
Honestly, either I’m making this entirely too hard on myself, or looking after your own health is a full-time job.”
Nicole’s eggs were harvested on a Thursday, a chemo port was inserted on Friday, and she started chemotherapy on Monday. She recalls, “Livestrong Fertility gave me one less thing to worry about. A burden was lifted.”
“I couldn’t find the time or energy to confront the more long-term results of cancer, such as the ability to have children, credit scores, debt, and even death. On top of that, I think looking back I had been focusing on the physical exhaustion and the things that were stressing me out a lot, so it speaks volumes that during those hard times that Livestrong wasn’t stressing me out at all. They took care of getting my medication to me so I didn’t have to,” she continued.
“I am engaged, and I still find comfort that my eggs from when I was 25 still remain preserved and ready to go when we decide to start a family.”
Nicole is now in remission, stating, “I’m not yet at the important 5-year mark, but the cancer probably would have recurred if it was going to. I still get a little nervous, though.”
January 30, 2023 marked four years since Nicole’s eggs were preserved.
“I could go into premature menopause, so I have no guarantee of fertility. I would be worried if I had not frozen my eggs. Eggs make it possible to live normally without having to rush. And the quality of the eggs taken at age 25 is better than at 29.”
“Coming from a big family, I knew I would want kids. Not a crazy-large family but two or three kids in the future. I [now] have the reassurance of the eggs. My sister and stepsister recently had babies. Everyone asks when my fiancé and I will use the eggs like they are future family members!” she chuckles.
She describes navigating the healthcare system as a full-time job — the paperwork, appointments, having everything on file, all complicated by being diagnosed in a different country. Nicole reflects, “It was Livestrong taking a big piece off my plate — lifting the burden emotionally and financially.”
The Beautiful Butterfly
Reflecting on where she is today, Nicole says, “I have a full head of hair. I feel back at the beginning. I’m less worried and anxious and in a really awesome place now.”
A quote resonated with Nicole when starting her cancer journey.
“We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty.” — Maya Angelou
“I looked at all of the surgeries, egg freezing, hospital visits, days in chemo, etc. as the changes I had to go through, and I think that really helped!” she reflects.
Nicole holds a degree in Medicine, Health, and Society and has recently completed classwork on medical writing for the consumer. She recalls having access to large amounts of information online during her diagnosis and treatment but needing to weed through it deciding what to pay attention to. With a new cancer diagnosis, she explains, “You don’t want to be the one who Googles, but it’s like a foreign language. You try to collect as much information as possible, but it is not tailored to the average person. Cancer information is a whole other field. There are hundreds of types of chemo, each that affects you differently. Cancer treatment looks very different for everyone.”
Today Nicole’s focus is on writing Germie, a women’s healthcare platform developed from lessons learned while navigating her own cancer diagnosis. She recalls, “I was faced with what resources should I look into, and who are trusted. I was handed an impersonal pamphlet.” Germie aims to help “make your future easier to navigate.”
Her ovarian cancer diagnosis also led her to a community of women figuring out their diagnoses and treatment options, something Nicole refers to as “the cancer club.” Nicole is active on an Instagram support group for women with cancer. She reaches out to others recently diagnosed, “A few have asked about eggs. I tell them please check out Livestrong; they were the absolute best.”
Nicole often reflects on a memory at the forefront of her thoughts:
“This is It was the first time I went outside the flat/my apartment after my first surgery. At this point, I knew I had cancer, and they weren’t sure how bad it was.; Preliminary findings didn’t look so good. I had been told that I also needed to come to terms with the fact that I may never be able to have kids. My mom and I got to lunch; the waitress seated us beside a huge table of moms with their babies. I knew I wasn’t ready to have a baby then, but the idea of never being able to have one really scared me, too. I sat there for the whole lunch hearing the mothers chatting with their children giggling in the background thinking, ‘What if I never get to experience this?’ So, I think that was the big moment that I thought, I don’t care how hard the egg-freezing process is because I want to be able to give myself the opportunity. When you are told that you can’t have kids, you start to see babies everywhere. I am now optimistic and hopeful.”
About Livestrong Fertility
Livestrong Fertility is dedicated to providing reproductive information, resources and financial support to survivors whose cancer and its treatment present risks to fertility. Learn more and apply here.