Randalynn Vasel’s Ovarian Cancer Story

Randalynn Vasel has never shied away from a challenge.

The mom of two young children and a business strategist for Fortune 500 companies has been a life-long athlete who has participated in events the likes of 100-mile cycling events and climbing the famous Mount Kilimanjaro.

What she did not know is that the physical challenge that would test her the most would be a diagnosis of ovarian cancer, nor did she know how well the endurance and mental fortitude she had built through the years would serve her. She was diagnosed at just 36 years old.

Now, an almost seven-year survivor of ovarian cancer—a disease which is most commonly diagnosed between the ages of 55 and 64 and has no existing screening test—she shares with us the story of her accidental diagnosis, post-treatment impacts on life that are unique to millennials, the importance of genetic testing, and how advocating to educate and empower other young women about their gynecologic health has become her mission.

Randalynn Vasel is a business strategist for a Fortune 500 company who lives in St. Louis, Missouri, and is a single mom of two. By day, it’s all about business and by night, you will find her at either a dance studio or baseball field with her kids, or somewhere in between, as she says.

This year she will reach her seven year mark of survivorship from ovarian cancer. A lifelong athlete, each year she trains for at least one endurance challenge.

Life Before Cancer

Active lifestyle

Growing up Vasel lived in a rural area of the Midwest giving her and her active family access to exercising outdoors. She could play almost any sport competitively that she wanted to.

While she did not worry much about her health, she remembers always being super active and involved in sports.

Health mindset

Over the years, her mindset about health has evolved from being about appearance to overall wellness. In college, fitness was more about working out for the purpose of looking thin and fit. That thought process all changed as she moved into adulthood, became a parent, and even more so once she was diagnosed with cancer. Since then, she has realized the value of fitness is about overall wellness.

Lack of awareness

Despite clear knowledge of how to stay healthy with physical fitness, knowing about the symptoms and risk of ovarian cancer was not on her radar.

“I'm an educated human who went to college. I feel like I have a wealth of knowledge when it comes to basic life skills, but no one had ever told me, ‘Here’s the things that you should advocate for or should be worried about.’ No one said, ‘Here's what a cancer diagnosis looks like,“ Vasel said. “I never felt as naive or uneducated until I had a cancer diagnosis.”

“I didn't know that there wasn't a preventative screening test in place,” Vasel recalled. “I didn't know it could happen to somebody my age or the long-term impact.”

She thought she was doing all of the right things, getting her yearly exams at the gynecologist, and surely if there was something she needed to be watching for, they would tell her. Unfortunately, that is not always the case, as she points out.

“I was in my mid 30s, and this shouldn't have happened to me. Women are normally diagnosed with ovarian cancer in their mid to late 50s and even more in their 60s. So, it shouldn't have been on my radar.” Vasel said. “But to some degree it should have because it can still happen, right? Even though I make up about 6% of the diagnoses age bracket wise, it’s still a percentage, not zero.”

Vasel and her two young children in the months before her diagnosis.

Getting Diagnosed

The discovery of her ovarian cancer was in Vasel’s words “pure accident.”

She was super stressed at the time with her job, plus having very young children, and being a single for about 18 months at that point. So, it was easier for her symptoms to go unnoticed.

She experienced fatigue like she never felt before and lost about 20 pounds because she wasn’t eating.

“I thought that was because I was stressed out because I don't eat when I am stressed. However, one of the signs and symptoms for ovarian cancer is lack of appetite or inability to eat,” Vasel explained.

It was not until she went on a road trip with a friend around holiday time that her symptoms made her truly stop and take note.

“I remember being super tired and thinking it’s because my workout routine is stale. I need to change things up,” Vasel said. “When I got to Florida, the tumor that had formed had the tendons and everything kind of grown around it, so it wasn't causing any issues. However, when I started moving in different ways, it started to create UTI-like symptoms.”

On January 2, 2017, Vasel ended up in urgent care, where they did an x-ray, saw nothing, and prescribed her Cipro. Their recommendation: If in a day or two you aren’t better, see your primary care doctor. It did not take long before she was at the ER.

“All of the normal signs and symptoms that you would have had outside of bloating, all escalated. It went from a UTI—well not really because I probably started with not being able to eat or feeling full quickly—to extreme pelvic pain to the point that I would only be able to take about five or six steps,” Vasel said. “It felt like I was in labor, and I couldn't even have my son who was three at the time, on my lap. I'm thin so because he was brushing up against where the tumor would have been, I felt that.”

At the ER, CT scans found two masses, one which would end up being malignant and the other which was not. They were bilaterally on both ovaries.

Genetic testing

Only about 15% of women receive a diagnosis of ovarian cancer at stage 1 or stage 2—the earliest and most easily treatable. The rest, Vasel astutely points out, are diagnosed at stage 3 or 4 because the cancer mimics itself as so many other things.

Three weeks after learning of her diagnosis she got her staging from pathology. She had a diagnosis of ovarian cancer stage 1 c and a very focused group of endometrial cancer.

“I was very lucky. Most women usually take about six months to get an ovarian cancer diagnosis, which is why most are diagnosed at a later stage.”

It was not genetic. However, she did end up having a strong family history of cancer that would come into play after finishing treatment.

“My Dad ended up getting sick with two back-to-back cancers. One was prostate cancer, and so the pieces started to make sense because his mother had breast cancer,” Vasel said. “Probably had the patterns played out in the right way I would have been a little bit more of aware of what to look for but not necessarily.”

While only 5-10% of cancers are the result of mutations, she emphasizes not only how super important it is to talk about your family history with your doctor, but also to find your what your family history of cancer is in the first place.

“Your family history does not just come from your mom. You have two parents,” Vasel said. “I always say make sure you talk about your dad and your mom. It all matters Brothers, sisters, aunts, uncles too,” Vasel said.

Vasel and her dad at the St. Louis Ovarian Cancer Awareness annual gala, She was the speaker for the night (the survivor story).

When her dad had prostate cancer they learned that he had a genetic mutation that Vasel and her maternal grandmother also shared. It is not tied to cancer but because they all had hormone-related types of cancer (ovarian, prostate + endometrial, and breast), she decided to have a prophylactic bilateral mastectomy in 2018 after his diagnosis.

It was hard for him. He actually sat in the room with her afterwards and said, ‘This is because of me.’ But Vasel quickly flipped the switch on that viewpoint saying to him:

“Yeah, because we have the knowledge you empowered me. I got to make the choices that I wanted to versus being diagnosed potentially later and having to undergo chemo radiation, and surgeries.”

Initial impressions on the diagnosis

When she was first diagnosed, she went straight to fight mode wanting to “get this out of me and get treatment started.” She had two very young children, ages 3 and 7.

It was hard to understand how someone like her could receive this diagnosis. “I was in my mid 30s. I was young. I was fit, and I thought I was healthy,” Vasel said.

She always tells the story of how her insurance provider called her for the first time to have this nurse navigator walk her through everything about coverage and one of the first questions she asked her was: “Rate yourself on a scale of one to five with five being super healthy and zero being not healthy at all.”

Vasel asked her: “Is this with or without cancer? Because if you're asking me without cancer then I am a four or a five. I am healthy; I don't have any problems. But I said if you're asking me like with cancer, I am zero. I am like fighting for my life here.”

Treatment Journey

The recommended treatment was an invasive surgery and chemotherapy—both equally daunting.

“They were able to remove what they thought at the time was a Dermoid cyst, which has a 1% chance of being malignant, and sure enough I would find out a week later it was malignant,” Vasel said. “I knew that the membrane on the tumor had ruptured, but what I didn't know was if it had spread because that would not be your normal path to finding out you had ovarian cancer.”

With ovarian cancer there's only one very proven frontline chemotherapy treatment: Carboplatin and Taxol every three weeks, Vasel explained. What differs based on the patient is the dosage and frequency.

“Because I was younger, early stage, really healthy, I was able to get the largest concentration at one time every three weeks,” Vasel said. “So, it really knocks you down, but you can turn down the dose.”

Treatment challenges

Even for the most physically fit people like Vasel, the physical challenges of chemo felt insurmountable at times and were a lot to endure.

The side effects she experienced included:

Nausea
Ridiculous levels of fatigue
Losing all of her hair
Difficulty walking and moving her limbs compared to before chemo
Pain in her hands and feet

“I was not a good chemo patient,” she recalled. “I was very sick from the second that they turned on the drip.”

Support system

During this very challenging time, she had strong support from her parents, immediate family, and close friends.

As for her children, she made sure to sit there dad down with them when telling them and made sure everyone was aligned on how they would talk about her diagnosis.

“Resources for the young adult cancer community were super scarce, at least on the ovarian cancer side of things, but it’s probably across the board,” Vasel said. Through social media, she was able to meet younger people going through treatment, and they would meet up online as groups to share stories.

“I was the youngest person at treatment by far and so there wasn't even anyone in there that I could connect with. All the old ladies were lovely. However, they would tell you they did not love to see me like,” Vasel said. “They did not think I should’ve been sitting in that chair.”

Life After Treatment

To her and most cancer survivors, treatment was the easiest part of the journey.

“Now, it's really ridiculous to say that because you're getting pumped with all these toxic drugs, literally, but the doctors were telling me what to do, when I needed to be there, and what we were going to do. You told me I was going to have scans on this day. My blood work was on that day. But once you get that all clear, I think that's where it becomes a little bit challenging,” Vasel said.

She went from living from appointment to appointment seeing her doctor every three weeks to every three months.

Vasel also had some lingering side effects that she had to get used to. Having a full hysterectomy put her straight into menopause, which is more drastic than your body gradually losing your hormones. It wreaked havoc on her cardiovascular system and her bones.

“Unfortunately, even though I am very active, and hike, cycle, and do weightlifting, cardio is super challenging, and I am in osteopenia in all of my lower spine, femur, wrist and hips—some major joints. So, I worry about my heart and skeletal system that's holding me in place.”

Dating after cancer

Another unique part of her journey is having to get back into the dating world because she is pretty active online with her advocacy work. If someone googled her, he would find out right away that she had, had cancer before she had the opportunity to disclose her cancer history in person.

“Those are kinds of anxieties that you have to come to terms with and work through,” Vasel said.

An amazing moment! Vasel after mastering the climb of the famous Mount Kilimanjaro. After a lot of training, she climbed to the top with a team from the National Ovarian Cancer Coalition.

Turning Challenge into Motivation

Since becoming an ovarian cancer survivor, Vasel transformed her adversity into advocacy. She shares her story and raises funds for awareness and treatment around cancer in general.

She sits on the board for St. Louis Ovarian Cancer Awareness, which serves the Missouri, Kansas, and Illinois area. She is very involved with the National Ovarian Cancer Coalition (NOCC), which has great nationwide programs. They offer patient-needs funds, meals, and information for caregivers among many other things. NOCC is who she climbed Mount Kilimanjaro with.

This year, she will be pedaling for two organizations. First, Pedal the Cause in St. Louis, where they raise about $5 million annually that goes directly towards cancer research. She will also be working with NOCC and doing El Toro in Tucson.

Her challenge this year for fun is to do the 100-mile Tour du Mont Blanc in Switzerland, Italy, and France in July.

Lessons Learned

Reflecting back, it is hard to believe what is now common knowledge to her is still misunderstood by many others.

Two common misconceptions about ovarian cancer she finds:

People think pap smears screen for ovarian cancer, which they do not. Actually, there is no screening test.
It only happens to older women.

Vasel highly encourages women to tell their OB-GYN what's going on and update them on your family history, so that they can use that information to better take care of you. She empowers women to ask questions about their gynecological health when they go for their annual exam.

What is my pap smear screening for?

What types of gynecological cancers do I need to be aware of or concerned about?
What are the signs and symptoms of those gynecological cancers?

“I think the more we can know, the more we can share stories, and the more we can spread the signs and symptoms, the better. Right now, that's the best way for awareness.”

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Randalynn Vasel: My Ovarian Cancer Story