Gold medal-winning gymnast Shannon Miller, who was diagnosed with ovarian cancer at age 34 and has now been cancer-free for 14 years, has continued to advocate for more awareness about ovarian cancer and more personalized treatment approaches. (Photo: Renee Parenteau)
Renee Parenteau
To say that Shannon Miller knows about tumbling in gymnastics would be an understatement. She’s the second most decorated American gymnast of all time— male or female—and was one of the “Magnificent Seven” U.S. women’s team that took the team gold at the 1996 Atlanta Olympics, where she won an individual gold medal on the balance beam as well. Her life took quite a different and unexpected tumble, though, in 2011 when she was diagnosed with ovarian cancer at age 34. Since then, she’s managed to get through some very tough times and back on the balance beam of life. Now cancer-free for 14 years, Miller recently spoke to me about some personal—and personalized—things that she’d like more people to know about ovarian cancer, its diagnosis and its treatment.
Since her diagnosis, Miller has been a fierce advocate for more awareness about ovarian cancer, how different people’s cancer journeys can be very different and the importance of more personalized rather than one-size-fits all care. This has included urging women to know their bodies and symptoms better, advocate for themselves to get the right care and communicate and work closely with their medical teams. She has continued to work with different organizations that are addressing ovarian cancer, including recently teaming up with biopharmaceutical company AbbVie to raise awareness about how biomarkers can help personalize care.
Shannon Miller Almost Skipped Her Routine OB-GYN Appointment
“My journey kind of started in late 2010 when I had already been working in the health and wellness community just helping women make their health a priority,” recalled Miller, who is now 48 years of age. “I was actually hosting a radio show at the time, interviewing physicians and nurses, and we were talking a little bit about cancer awareness in the Fall and getting to your regular doctor’s appointments, how early detection is so important.”
Ironically, though, Miller then almost didn’t go to one of her own regularly-scheduled routine OB-GYN appointments. “I was going to be out of town for work on that day,” she related. “So I had called the office up, admittedly, going to cancel or severely postpone that appointment.” But then Miller realized that she wouldn’t be listening to what someone—namely Miller herself—had been telling others to do. “I thought, I’m not walking the walk,” she explained. “So, I ended up taking the first appointment available that morning.”
It’s a good thing too, because that routine appointment didn’t turn out to be simply routine. “I went in and told my doctor, ‘Oh, I feel fine,’ just wanted to get myself checked up and get out,” Miler said. But on the pelvic exam, her doctor found a “baseball-sized cyst” on Miller’s left ovary.
Now, you probably don’t hear the word “cyst” every day unless you happen to be in the medical profession. A cyst—which sounds like “assist,” you know the kind of thing you do in basketball or as a wing-person at a party—refers to some kind of sac-like structure found in the body that may be filled with air, fluid or some other material. A cyst can be benign or malignant depending on what type of tissue is in the cyst. “At that point, I really didn’t even know what that meant, a cyst,” Miller recalled. “I was told that they can come and go, let’s watch it. I went through the wait and observe period. But my doctor was also very good about continuing to get any tests and scans available at the time.”
Miller Found The Period Of Waiting And Uncertainty To Be Particularly Tough
Shannon Miller is the second most decorated American gymnast of all time— male or female—and was one of the “Magnificent Seven” U.S. women’s team that took the team gold at the 1996 Atlanta Olympics, where she won individual gold on the balance beam as well. (Photo: Dave Black)
Dave Black
The cyst did persist, though. “My gynecologic oncologist had done an ultrasound and realized it was a mass,” Miller explained. “It was not the type of cyst that was going to just go away.” Since there is no routine non-surgical test for diagnosing ovarian cancer, the decision was made to take Miller to surgery to take out the mass and see what it was.
But such surgeries typically take at least some time to set up, prepare for and schedule. Miller had to wait for it, wait for it, wait for about a month before going to the operating room. She called this waiting period “one of the harder mental and emotional portions of the journey. It was a very isolating experience, so few answers and just feeling like you’re walking around like a zombie and a lot of very well-meaning loved ones are saying, ‘oh, it’ll be fine.’ And inside you’re thinking, ’But how do you know?’”
Miller Had A Rare Form Of Ovarian Cancer
Miller proceeded to surgery in January 2011 to have the mass and surrounding tissue removed. “I woke up from surgery to find out that it was a rare form of ovarian cancer,” Miller recalled. “But they had caught it early, and I then went through chemotherapy.” Even though finding out you have ovarian cancer isn’t exactly the greatest thing to hear, Miller did say, “It was almost a relief just to know what it was.”
More specifically, Miller had a germ cell tumor of her ovary. In this case, “germ” doesn’t refer to those icky things that you try to wash off your hands while singing “Happy Birthday.” No, germ cells here refer to the reproductive cells within your ovaries. A germ cell tumor of the ovaries is when the egg-producing cells begin growing in an abnormal way. While most ovarian germ cell tumors are benign (meaning that they are noncancerous), in rarer cases, they can be malignant and grow in an uncontrolled manner. Germ cell tumors comprise only about one to two percent of all ovarian tumors.
Miller’s Case Shows The Importance Of Early Diagnosis And Treatment
When Miller said “caught it early,” she meant that the ovarian cancer hadn’t yet spread more distantly. It had already reached stage II, meaning that the cancer had extended beyond her ovaries into nearby body parts in her pelvis. However, the cancer had not yet progressed past her pelvis into her more distant lymph nodes or organs elsewhere.
They say that timing is everything in life. Well, that’s especially true with diagnosing and treating cancer. The longer you wait to identify and treat cancer the greater the chances the tumor will spread beyond its initial location. And the further the cancer spreads in your body the harder it is to successfully treat.
The speed at which a cancer grows and spreads in turn does depend heavily on its initial location, cell type and grade. The higher the grade the more aggressive the cancer is. “I didn’t find out until the couple weeks later that it was a higher grade malignancy than they originally thought,” said Miller. “That’s when I found out that I’d need to go through this pretty aggressive chemotherapy.” She continued by saying, “We need to speak up. We need to advocate for ourselves because early detection really does matter.”
Miller In Retrospect Realized That She Had Been Experiencing Symptoms Of Ovarian Cancer
In addition to speaking up, you’ve got to listen, listen to what your body is telling you—or perhaps whispering to you. That can be tough with all the noise from work, home life, advertising and people on social media telling you to do stuff like eat dirt thrown at you each and every day. When Miller looked back after her diagnosis, it became apparent that even though she had initially told her doctor, “Oh, I feel fine,” that really wasn’t the case.
In retropsect, Miller realized, “I had three of the primary signs in symptoms of ovarian cancer that I had completely just chalked up to just body changes after having my son, who was only about a year old when the cysts was found.” For example, she remembered in retrospect, “There were a couple of days where I was doubled over with stomach pain.” She also had experienced other signs of ovarian cancer, like bloating and fatigue, which she had attributed to stress and dehydration at the time.
Then there was the weight loss. “I had lost about eight pounds within a month, but I thought I was losing baby weight,” Miller said. “So it didn’t mark itself as a red flag. It was just, oh, my body’s changing, you know, a year after having a child.” Unexplained changes in appetite or weight can be warning signs of ovarian cancer as well.
It’s common for people to write off such symptoms as simply being on the uneven parallel bars of life. It’s especially easy to do so if you are a high achiever like Miller and used to fighting through discomfort. You know, the whole no pain, no gain mentality.
Add into the mix the fact that Miller had, oh, just brought a completely new human being into the world, which isn’t the easiest thing to do. “After you have a baby, your body is going through all these different things and you’re not focused on yourself,” Miller emphasized. “You’re focused on this new baby.” Yeah, few people are going to tell you why the heck are you focused on your baby.
This experience has since taught Miller the write stuff, so to speak. “It’s really hard to say how long I was experiencing symptoms because I didn’t really log them,” said Miller. “I do now. If I’m having any issues, I write it down and I pay attention.” She continued with, “And if I am having an issue for more than two weeks, I’m going to go speak to my doctor.”
In some ways, all this has helped Miller do a back handspring to the future. “Something that sticks out for me is that as an athlete, my job was to know everything that was going on with my body, to pay attention to every signal,” she said. “And as just a woman not an elite athlete, I had completely forgotten to do that. I just wasn’t listening.”
Chemotherapy Hit Miller Hard But Reminded Her The Importance Of Her Team
Miller described chemotherapy, “as certainly the toughest thing I’ve ever had to do, mentally, physically and emotionally.” (Photo: Liliane Hakim)
Liliane Hakim
After surgery, the next step in treatment was chemotherapy, in this case BEP, an acronym for the three agents used in the regimen: bleomycin, etoposide and cisplatin. “BEP was as my doctor described it, the hit em hard, hit em fast version,” Miller recalled. “And I thought I was going to do great. I mean, here I was a retired athlete, I had the mental game, I was still physically active, healthy and I’ve got this.”
Oh, but chemotherapy really got her, as it does most people. That’s because chemotherapy in many cases involves administering toxic agents to the body, agents that can destroy cells, all kinds of cells. It’s just that these agents are more toxic to cells that are rapidly dividing like cancer cells. But along the way they can also harm many of your normal cells. That’s why it’s very important to choose the right chemotherapy regimen for a given patient in a way that maximizes the ratio of destroying cancer cells over side effects—again personalizing care and treatment.
“By the end of the first week, I couldn’t keep down food, couldn’t keep down water,” Miller said. “I was back in the hospital and it was the first moment I realized that the one goal that my doctor gave me was to get through treatment without stopping and I wasn’t sure I could do it.” Miller described chemotherapy, “as certainly the toughest thing I’ve ever had to do, mentally, physically and emotionally.”
Being floored by chemotherapy did remind her about something she had known while she was on the gymnastics floor. “It was at that point that I realized I was not working with my team.” Miller said. “I had kind of left that on the gymnastics floor and had in my mind that I didn’t want to complain, didn’t want to be a burden and so kind of suffered in silence.” But one day a nurse told Miller that she really had to relay her challenges to the treatment team so that the team could help. “That really changed the game for me,” Miller said. “It kind of clicked that, OK, I have a team, and I’ve got to utilize that team, I’ve got to be a part of that team and I’ve got to work with the team.”
The Experience Taught Miller The Importance Of Giving Yourself Some Grace
The chemotherapy course itself lasted nine weeks with her finishing on May 2, 2011. “I thought I would start feeling pretty good afterwards,” said Miller. But the fatigue and nausea continued for at least another year. This wasn’t simply the I’m-tired-of-scrolling-through-social-media kind of fatigue or even the oh-I’ve-trained-hard-for-the-Olympics type of fatigue. No, as Miller related, “Each of my limbs felt like it weighed a thousand pounds, and some days I wasn’t sure how I was going to stand up and brush my teeth. That was a complete 180 from everything I had ever known from gymnastics.”
Even today, years later, Miller still experiences after effects from the chemotherapy. “The neuropathy of my hands, it’s still there but it’s a lot better,” Miller mentioned. “The chemo brain, it’s one of those things that we talk about, but it can be real. Doing those memory games has been super helpful for me.”
In addition to the potential aftereffects of treatment, all cancer survivors have to deal with other concerns such as the continuing fear of recurrence. Although statistics can offer some reassurance—or the opposite if odds don’t seem in your favor—ultimately, your journey is your journey. You can never be sure about what may happen until it, you know, actually happens. Each person’s journey is personal and should be, you got it, personalized.
Miller was well-known for grace under pressure on the gymnastics floors. But this experience has taught her to give herself another type of grace. “I think the biggest thing is to, as a patient, give yourself some grace,” she urged. “Know that each day, it’s just going to get a little bit better, and some days are going to be better than others.”
That may not be obvious to those around you when you are recovering from cancer and cancer treatment. Miller offers the following advice to patients regarding their caregivers and loved ones: “A lot of times when you ring the bell and the treatment is over, people kind of have this big sigh of relief and then expect you to go back to 100% of everything. That’s not the way it works.” She added, “Again, work with your team to make sure they know where you are in your journey and then know that it’s okay to take some time.”
Miller Has Been Raising Awareness About Ovarian Cancer And More Personalized Treatment Approaches
Miller has been trying to raise more awareness about ovarian cancer such as serving as the keynote speaker at the Ovarian Cancer National Alliance’s 14th Annual Conference, collaborating with organizations like Bright Pink and CureDiva and speaking about ovarian cancer on various TV shows such as the following FOX23 News Tulsa appearance:
As you can see, she mentioned on the news segment her collaboration with AbbVie on their “Biomarker Boost” campaign, which aims to raise awareness about how different biomarkers can help with cancer prevention, treatment and management. Biomarkers are substances such as proteins or genetic material that can be found in different parts of your body and can be detected via samples of your body tissues or fluids such as blood and urine. The presence or absence of different biomarkers can tell you more about your risk of getting ovarian cancer and if you do develop ovarian cancer what treatments may be more or less effective. Doctors have already identified an alphabet soup of different biomarkers that can be useful for the management of ovarian cancer such as the BRCA1/2 genes (breast cancer gene 1 or 2), FRα (folate receptor alpha), HER2 (human epidermal growth factor receptor 2), HRD (homologous recombination deficiency), MMR (mismatch repair) and MSI (microsatellite instability).
Checking such biomarkers can help cancer prevention and treatment strategies become more—and here’s that “p” word again—personalized. After all, why should such things be like a slanket, where one size fits all. Different people and different cancers will respond to different treatments in different ways under different circumstances. Like clothing, what works for one person may not work for someone else.
After tumbling through one of the most successful gymnastics careers ever, Miller has certainly gone through the rough and tumble of a cancer diagnosis and treatment. But she’s since landed on her feet, armed with wisdom and knowledge that she wants to hand to others so that they can get a leg up on ovarian cancer prevention and treatment.