In her mid 20s, Julie McMullen was diagnosed with endometriosis. But other than the annoyance of heavy periods and occasional ovarian cysts, she didn’t think much of it.
Increasingly, however, cysts on her ovaries would occasionally fill with blood and burst, sending her to the emergency room in extreme pain.
In August of 2006, after yet another burst cyst, McMullen had her then-fiance drive her to Sewickley Valley Hospital. A doctor there expressed concern about her persistent emergency room visits and ordered more tests.
When she woke up, “that’s when they told me I had ovarian cancer,” said McMullen, of Sewickley Heights. “I was 27.”
New research published this summer ties a diagnosis of endometriosis to an increased risk of developing ovarian cancer.
Endometriosis is a chronic condition in which cells similar to those in the lining of the uterus grow outside the uterus, sometimes causing pelvic pain, heavy or painful periods or infertility. The study, published in JAMA, found that women with endometriosis were also 4.2 times more likely to develop ovarian cancer and women with ovarian endometriosis and/or deep-infiltrating endometriosis were 9.7 times more likely to develop ovarian cancer than women with no endometriosis.
“Many of us have been concerned about this for a period of time,” said Thomas Krivak, director of the Ovarian Cancer Center of Excellence at Allegheny Health Network. “There’s more research coming out to say endometriosis can predispose women toward ovarian cancer and put them at a higher risk later in life.”
Ovarian cancer is still a rare cancer, said Krivak, noting that the baseline risk of developing ovarian cancer is about 1.2% by age 70. And so even a risk at four times the general population is a relatively low risk, he said.
But increased awareness of the link between endometriosis and ovarian cancer can change the risk calculus when it comes to treating individual patients.
“The studies give us additional information to talk with our patients about what to do,” he said. “I wouldn’t say that it gives anything definitive, like we have to do this at a certain age, but it brings some good information so that patients can make decisions.”
A hypothetical patient with endometriosis who is 47 with three children might be tipped more toward removing her ovaries, for example, to decrease her future risk of developing ovarian cancer.
A known link to endometriosis may also lead doctors to take early symptoms of ovarian cancer, such as bloating, pelvic pain or “feeling full,” more seriously.
“Women know their bodies and doctors need to pay attention to that,” said Krivak.
For McMullen, now 45, her biopsied cyst resulted in an early detection of her ovarian cancer. She went through six rounds of chemotherapy and had surgery performed by Krivak, who was able to save one of her ovaries.
McMullen, who had a 6-year-old daughter, got married to her then-fiance, Michael McMullen, less than a year after she was diagnosed. She wore a wig at her wedding, because her hair had fallen out during chemotherapy treatments. “It was hard but at the same time, we knew how lucky we were that we caught it early,” she said.
She and her husband were able to have two children using in vitro fertilization and her one remaining ovary. After her childbearing years were over, she had a hysterectomy to further reduce the risk of the cancer reoccurring.
She feels like the new research into the link between endometriosis and ovarian cancer could help women who were in a similar position to hers 18 years ago.
“That they are finding this link is huge because early detection is key,” she said. “I can’t imagine, even just a year later, my outcome could have been totally different.”
In its early stages, ovarian cancer sometimes has no symptoms, or has symptoms that are mistaken for routine abdominal discomfort. Because it is often fairly advanced when it is discovered, the overall five-year survival rate for ovarian cancer is only about 50%, according to the National Cancer Institute.
The McMullens own 10 restaurants in the Pittsburgh area and in the years since Julie was diagnosed, they have raised millions for ovarian cancer research — much of it through fundraisers at their restaurants.
McMullen hopes that, eventually, the money toward research can make a difference in saving lives.
“I have a number of friends who, you know, didn’t make it — it was either too far along or they didn’t show any symptoms,” she said. “Hopefully the things we are doing will help more women so that my case is more the norm than the exception.”
First Published: October 20, 2024, 6:30 p.m.
Updated: October 21, 2024, 4:39 a.m.
