While taking out the trash in October 2014, Free — a 68-year-old, semiretired healthcare consultant — had a hard fall and injured her hand and hip. Emergency room doctors told her that nothing was broken and she would be fine. They were less reassuring when she described the strange pull she felt in her abdomen when she fell and the persistent abdominal pain and bloating she’d been experiencing for months. Free also told them about other mysterious symptoms she’d been living with — frequent urination and urinary incontinence. In the months before that October trip to the ER she’d visited two different primary care doctors to get help for what she thought was probably a urinary tract infection. Both times she was told there was no infection and sent on her way. Then, the day before her fall, a doctor friend remarked on her lack of appetite and, listening to her describe other symptoms, asked if she had a family history of ovarian cancer. The question prompted Free to try to move up the vaginal ultrasound she had scheduled for weeks later. During the six hours Free spent at the ER after her fall undergoing tests and waiting for results, she began her own sleuthing. “I started looking at the symptoms for ovarian cancer on my iPad and saw that I had a number of them, which was very disturbing,” she says. The ER doctors eventually told her that an ultrasound and CT scan of her abdomen had identified a significant amount of ascites (fluid buildup) — a potential indicator of ovarian cancer. Free was later diagnosed with advanced ovarian cancer, stage 3B. Six years, three surgeries, and three rounds of chemotherapy later, the resident of Spring Valley, Ohio, wonders where she would be now if her fall hadn’t fast-tracked her diagnosis. RELATED: Ovarian Cancer: Myths vs. Facts
Listening for the Whisper of Ovarian Cancer
“People used to call ovarian cancer the silent killer,” says Beth Karlan, MD, professor of obstetrics and gynecology at UCLA’s David Geffen School of Medicine in Los Angeles. “I say ovarian cancer whispers and we need to train ourselves and physicians to listen carefully.” Issues with early detection help explain why ovarian cancer accounts for more deaths than any other female reproductive cancer. The American Cancer Society (ACS) estimates that about 21,750 women will receive a new diagnosis of ovarian cancer in 2020 and about 13,940 women will die. When detected and treated early, ovarian cancer has a very good prognosis: It’s estimated that more than 90 percent of patients live longer than five years after diagnosis. Unfortunately, only about 20 percent of ovarian cancers are found before they’ve spread, according to the ACS. Because the most common symptoms — abdominal pain, swelling, and gastrointestinal problems — can indicate a number of other maladies, doctors and patients often overlook the link to ovarian cancer until the disease is advanced. RELATED: Is It Ovarian Cancer or IBS? Finding ovarian cancer early can impact treatment and cure rate, but doing so is difficult. Currently, there are no reliable screening tests to detect early ovarian cancer in seemingly healthy individuals. Transvaginal ultrasound (TVUS) and the CA-125 blood test are the most frequently used diagnostic tools to confirm ovarian cancer in symptomatic patients, but they have drawbacks. TVUS, an ultrasound wand inserted into the vagina, can identify a mass but can’t determine if it is benign or malignant. The CA-125 blood test measures amounts of the CA-125 protein, high levels of which may indicate the presence of ovarian cancer. But it’s not useful as a screening test, since high levels of CA-125 can also mean other disorders, such as endometriosis and pelvic inflammatory disease. In addition, not everyone who has ovarian cancer has high CA-125 levels. In order to beat ovarian cancer, women need to be aware of early symptoms and bring up the possibility of the disease with doctors who may not have this illness on their radar. “I always say if [a symptom] is persistent and progressive, one day after another for one or two weeks even, tell your doctors you’re concerned. Ask, ‘Could this be ovarian cancer?’” says Dr. Karlan. RELATED: 6 Common Questions About Ovarian Cancer, Answered
Cancer, Not Kidney Stones
Being diagnosed with Stage 2B ovarian cancer was a long time coming for 49-year-old Charlotte Kelly. Starting at age 13, when she had her first period, she’d experienced extreme pain and heavy bleeding during her menstrual cycle, developing endometriosis and fibroids. In her twenties and thirties, she tried different hormone treatments and underwent an endometrial ablation, a procedure that removes a layer of tissue from the uterus in order to stop or reduce heavy menstrual bleeding. In 2008, when she was 37, she had a hysterectomy. Even though her ovaries remained, she believed her gynecological troubles were finally over. “Boy, was I wrong!” says the Phoenix, Arizona resident. By late 2016, she’d visited primary care doctors, urologists, gastroenterologists, and ERs seeking an explanation for her searing abdominal pain, bloating, frequent urination, and urinary incontinence. RELATED: Seriously Bloated: Warning Signs You Shouldn’t Ignore Kelly was repeatedly misdiagnosed with everything from kidney stones to diverticulitis. She was told to change her diet. A urologist thought her crooked urethra might be the problem, so he inserted a metal rod to straighten it — “a very painful and completely useless procedure,” she recalls. When she arrived at the ER in March 2017 for probably the fourth time in as many months, she was desperate to know the cause of the pain that had plagued her for the better part of a year. That’s when a CT scan with a special contrast dye illuminated the large, cancerous tumor growing on her left ovary. Prepping for ovarian cancer surgery usually requires days, if not weeks, of testing and planning, but Kelly’s doctors wasted no time removing the tumor. “I was scheduled for surgery within a day, and since the tumor had hemorrhaged, the surgeon said I was extremely lucky as the internal bleeding would have likely killed me if it had gone on another day,” she says. Kelly’s cancer has come back twice and she’s undergone a battery of treatments to keep it at bay. For her, the recurrence has been worse than the initial diagnosis in many ways. “We all hope to be a part of the one-and-done club, but as the statistics show, it doesn’t work out that way for most of us,” she says. “I vividly recall one doctor saying ovarian cancer is like a field of dandelions: ‘You can mow it down with chemo but the dandelions are gonna spring back up sooner or later.’” RELATED: Complications of Ovarian Cancer: How Does It Affect Your Body in the Short and Long Term? “The doctor was feeling my stomach before the internal exam and the look on her face changed,” recalls Muro, 44. “She stopped and said ‘Get dressed. I’ll meet you down the hall.’ She’d felt this mass in my stomach and she ordered an ultrasound right away.” The ultrasound showed what Muro describes as a big black cloud concealing her ovaries. She was in complete shock. “My only symptom was weight gain. I thought it was maybe a little too much late night pizza. In retrospect, I do recall getting full pretty quickly and sex being uncomfortable.” Within a week of her diagnosis with a germ cell ovarian tumor, a rare kind that is usually benign, Muro was signing papers for surgery to remove the mass and evaluate its spread; she would also undergo a hysterectomy, if necessary. She turned out to be both lucky and unlucky. Only one ovary and fallopian tube had to be removed, sparing her fertility. But, unlike the vast majority of germ cell ovarian tumors, hers was malignant and required four rounds of chemotherapy. That chemo proved quite effective in eradicating the disease. But even when Muro reached the five-year survival mark, she didn’t really believe she was cured. “You should feel good about your five-year anniversary because you’re in remission, but I lived in fear,” she says. “Being a cancer survivor, you try to downplay your fortune because ‘Don’t jinx it’ is always in the back of your mind. I didn’t feel cured until I had a baby.” RELATED: Is There Sex After Ovarian Cancer? With just one ovary, Muro doubted she would ever be able to conceive, but she was wrong. She married in 2012 and had her son, Raven, three years later at 38. She celebrates September 22, the day of the surgery that saved her life, as a second birthday. “Everybody needs a hopeful story and it took me a really long time to see that that was me,” she says. “Now, I’m the cancer girl! I remind friends to make an appointment [with their gynecologist] and have taken friends to follow-ups and first appointments. Early detection saved my life. Surviving ovarian cancer is absolutely my number one greatest achievement.”