Ovarian cancer may be a disease that strikes more often in a woman’s 50s and 60s, but experts say it’s important to be aware of the symptoms in your 20s and 30s so you will be tipped off when something’s wrong. (GIF: Getty Images/Priscilla De Castro for Yahoo Health)
In the 40 years since the “War on Cancer” began, the number of deaths from ovarian cancer has dropped very little. While five-year survival rates for breast cancer stand at almost 90 percent, the odds of surviving ovarian cancer five years after diagnosis are just half that, roughly 45 percent. We’re still lacking an early-detection test for the deadliest of all gynecologic cancers, which seems to progress rapidly and carry only vague symptoms.
However, many women who are diagnosed with ovarian cancer are not blindsided by it. For months sometimes, they remember feeling “off.” But in the hustle and bustle of life, it’s easier to ignore symptoms that seem shadowy and evasive, until they become firm and concrete.
“I was probably sick for two years, but I brushed it off — and that’s what bothers me most,” says survivor Jenn Sommermann, now 50, who was diagnosed in 2007 at age 41. “They’ve long said ovarian cancer is the silent killer. Now, we’re saying it’s the cancer that whispers.”
Although the hallmark symptoms of the cancer can be vague, research has shown there are four key early symptoms of ovarian cancer: bloating, urinary changes, difficulty eating or feeling full quickly, and pelvic or abdominal pain. While symptoms are not identical for each person because cancers grow differently in everyone, experts say, the biggest tip-off with these is that they don’t go away. Even though most women who develop the disease will be over age 50 (the average age of diagnosis is 61), it’s important to understand your own bodily norms even when you’re in your 20s and 30s — like the length and duration of symptoms, the way you bloat, when in your cycle you feel most tired — so you can know when something changes.
Here, women who have had ovarian cancer share what the signs felt like, before they ever knew they had it.
Bloating
At first, Sommermann didn’t think much of her bloating — even though she’d gone through early menopause, the discomfort was still common. “Even afterward, you still cycle,” she explains. But one morning, Sommermann remembers noticing the look of her stomach while lying on her back in bed. “I told my husband, ‘My belly doesn’t even lay flat anymore. It’s still popped out,’” she says. “I just thought, This is not my body. That’s when I started pressing on my stomach and felt a mass.”
Fast-forward 72 hours, and Sommermann had been diagnosed with stage 3 ovarian cancer and undergone a full hysterectomy. Although she assumed the eggplant-size tumor that doctors found was on the left side, where she’d initially felt something awry, the mass was actually on the right. “All the organs had been pushed to the left side to make room for the tumor,” she explains.
Mary Schwarzenberger, 62, felt bloating and other symptoms slowly take shape this past winter. She initially dismissed them. “I’m not the type to run to the doctor, because I’ve always been very healthy,” she says. “To me, it just felt like bloating — but I probably should have known. I was doing ab work and sit-ups at the time like a maniac, and it wasn’t going away. I just attributed it to getting older.”
Difficulty eating or feeling full quickly
At the same time, Schwarzenberger had little want for food — even though, all her life, she’d been a good eater. “Normally, I’d eat a ton,” she explains. “But over the course of the winter before I was diagnosed, I’d eat and get full really quickly. This was somewhat strange, because it was winter, where I tend to be less active and eat more comfort foods.”
During those few months, as Schwarzenberger was feeling full and losing her characteristic appetite, she also dropped 20 pounds with very little effort. “I should have known sooner, since I was taking the weight right off,” she explains.
Urinary frequency or urgency
On April 2, Schwarzenberger saw her general practitioner for urinary symptoms. Initially thinking frequency and urgency issues were a byproduct of the aging process, she eventually thought she might have a urinary-tract infection.
Upon examination, her GP felt an enlarged ovary. “He arranged to get me in at the hospital immediately to have an ultrasound,” Schwarzenberger says. That enlarged ovary was a sign of stage 1B ovarian cancer. On April 15, she had a hysterectomy at Fox Chase Cancer Center in Philadelphia.
Sommermann says she noticed something odd just days before her diagnosis: She started waking up in the middle of the night to urinate regularly, where she’d previously rarely felt the urge to go at all. “At the time, I’d thought maybe I was drinking too much before bed,” she says. “I’d been trying to hydrate more often, so I thought maybe I needed to stop drinking water around 7 p.m. instead of later on.” The reality: The growing tumor was pressing against her bladder.
Pelvic or abdominal pain
The tumor wasn’t only causing problems for Sommermann’s bladder, but also for her entire digestive system. She was experiencing upset stomach and indigestion late at night, which she couldn’t seem to shake. “I was on the little purple pill,” she says, referring to NEXIUM, used for acid reflux. But it wasn’t helping.
Schwarzenberger also says she was beginning to have digestive issues, as well, experiencing frequent stomachaches — another symptom of life in your 60s, she was still convinced.
Individually, each sign of ovarian cancer may not seem earth-shattering. But when added up, the subtleties spell trouble — and can take their toll. Sommermann says she felt intense fatigue before diagnosis, another symptom some women report experiencing, along with back pain, pain with sexual intercourse, constipation, and menstrual abnormalities. “I couldn’t sleep the tiredness away,” she says. “I’d sleep for 12 hours on the weekend, and wake up thinking, ‘I still need more rest.’”
Luckily, Sommermann took action the moment she felt that bulge in her stomach, even though she was rather young and otherwise healthy. She had recently taken up triathlons, which she credits with helping to save her life. “I had become really aware of my own body,” she explains. “That’s what drove me to press for a diagnosis.”
The telltale sign
For most, ovarian cancer is not silent. Above all else, perhaps the telltale sign of the disease is simply that gut feeling that something is wrong inside your body. “With all the symptoms happening in succession, deep down, I just knew,” Schwarzenberger says. “I attributed it to getting older at the time, but that little voice inside me always knew.”
You have to know your body’s norms. Sommermann says if your body begins to deviate from those baselines and doesn’t change back, you need to tell your doctor as soon as possible. “Every woman knows what’s normal for her own body,” she says. “For instance, you know how much your weight fluctuates in a month, how much you gain or lose with your cycle.” If it dips or soars two months in a row, she says, something may be up. Don’t wait until you’re sure there’s a major problem to ask for tests.”
Sommermann was treated by Stephanie Blank, MD, a gynecologic oncologist at NYU Langone Medical Center’s Perlmutter Cancer Center, while Schwarzenberger was treated by Stephen C. Rubin, MD, chief of the Division of Gynecologic Oncology at Fox Chase Cancer Center.
Both docs stress the need to stay on top of symptoms. “Ovarian cancer is a fast-growing disease,” Rubin tells Yahoo Health. “Someone who gets checked and appears to be normal four to six months earlier can come in again and have advanced-stage cancer.”
Here’s how to be vigilant, and what to do if diagnosed.
- Ask for a transvaginal ultrasound. Getting a regular check from your gynecologist isn’t enough. “A Pap smear has nothing to do with ovarian cancer,” Blank tells Yahoo Health. “A Pap smear checks for cervical cancer.” While a doc might be able to feel a mass or enlargement on exam, a transvaginal ultrasound is your best bet — a test you can ask for if you suspect something is up. Depending on which doctor you’re seeing, Blank says a primary-care physician may be less familiar with this form of imaging.
- Know your risk. If you have risk factors for ovarian cancer, like a family history or mutation of the BRCA1 or BRCA2 gene, it’s wise to be even more aware of signs and symptoms. Although there are no formal recommendations about ovarian cancer screening, high-risk women can ask their doctors about a blood test that measures levels of CA-125, a protein secreted by ovarian cancer cells. Since this number is elevated in 80 percent of ovarian cancer cases, it might be a good idea to know your baseline at a young age.
- Get a gynecologic oncologist. If you are diagnosed with ovarian cancer, find a specialist to handle your care if possible. Although some regions don’t have many, a gynecologic oncologist is your best bet. “Research does show survival rates increase when patients have a gynecologic oncologist,” Blank says. “It’s more comprehensive care, the doctor has years more training, and it really is a tight-knit, long-term relationship.”
- Listen to your gut. Doctors and patients can’t stress this enough: Don’t bat away symptoms because you’re busy and they seem manageable. If a change in your body persists, or you develop a quirk that is unusual for your body, see a gynecologist right away. “You have to live,” Blank says. “You can’t run to the doctor every time you have a symptom like bloating, or you’d be there all the time — this is about a shift that lasts over time. If a woman is telling her concerns to a doctor and not getting the response she wants, she should talk to another doctor. You have to be your own advocate.”
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