Understand Endometriosis & Ovarian Cancer Risk
- A new study published in the Journal of the American Medical Association (JAMA) suggests women struggling with endometriosis, like singer-songwriter Halsey, are four times more likely to be diagnosed with ovarian cancer.
- Endometriosis occurs when tissue similar to the tissue that normally lines the inside of the uterus, known as the endometrium, grows on the outside of the uterus. It often brings debilitating pain and can often be difficult to diagnose.
- Although endometriosis isn’t curable, its symptoms can be managed for a better quality of life. Treatment may include surgery, hormone treatments, or pain medications.
- Ovarian cancer is sometimes referred to as “the cancer that whispers,” because the symptoms, though not completely silent, can be very subtle. When detected early, ovarian cancer can have a better than 90% cure rate. But symptoms of the disease – like cramping, abdominal bloating or lower back pain are easy to ignore – meaning only 20% of cases are caught early.
Singer Halsey, who accounts for one of the millions of women living with endometriosis across the globe, has been candid about her struggle with endometriosis (an often painful condition in which tissue similar to the tissue that normally lines the inside of your uterus grows outside your uterus), since 2016. Although endometriosis isn’t curable, its symptoms are able to be managed for a better quality of life, and treatment may consist of surgery, hormone treatments, or pain medications.
Read MoreThe study also found that women with endometriosis were about 7.5 times more likely to get type 1 ovarian cancer and 2.7 times more likely to get a potentially more aggressive form of the disease, type two ovarian cancer.
The National Cancer Institute (NCI) notes that the lifetime risk of a women developing ovarian cancer in their lifetime is approximately 1.1 percent, as per data from 2018–2021, not including 2020. Therefore, the new study’s findings on the increased cancer risk shouldn’t spark worry among women living with endometriosis.
Speaking to CNN, Karen Schliep, a senior author of the new study and associate professor at the University of Utah School of Medicine, said, “It should be noted that, because of the rarity of ovarian cancer, the association with endometriosis only increased the number of cancer cases by 10 to 20 per 10,000 women.
“We would not recommend, at this point, any change in clinical care or policy. The best way of preventing ovarian cancer is still the recommendation of exercise, not smoking and limiting alcohol.”
Taking Control of Your Ovarian Cancer Risk
Additionally, Dr. Michael McHale, an ob/gyn at the University of California, wrote around in an editorial piece accompanying the new research, “Moreover, these data support the importance of counseling women with deep infiltrating and/or ovarian endometriosis regarding the increased risk for ovarian cancer.
“Although the absolute number of ovarian cancers is limited, the increased risk is significant.”
Dr. Tatnai Burnett, a minimally invasive gynecology surgery specialist at Mayo Clinic in Minnesota, also spoke with CNN, telling the news outlet, “The risk is, overall, still on the lower side of cancer risks.
“Currently, even with the known risk levels, we haven’t recommended any universal screening for patients with endometriosis, and I don’t see that necessarily changing. We already do follow women with endometriomas or cystic endometriosis with ultrasound, to rule out the development of malignancy. So, I don’t see this changing our recommendations at this point.”
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Halsey’s Battle With Endometriosis
Singer Halsey, a mom of one, previously opened up about her struggle with endometriosis on social media back in 2016. Two years later, she said at an event, as per People, “I can’t pretend anymore that just because I’m a pop artist and I’m touring that everything’s perfect and everything’s all good and my skin’s always great and I’m fit and my outfits are always perfect.
“Sometimes I’m bloated, I’m on an I.V., I’m sick, I’m on medicine, and I’m backstage, terrified that I’m going to bleed through my clothes in the middle of my show. That’s the reality of it,” she explained at the Endometriosis Foundation of America’s ninth annual Blossom Ball.
Many women, like Halsey, are living with endometriosis as it affects approximately 2 to 10% of American women ranging in age between 25 and 44, according to Johns Hopkins Medicine.
“Reproductive things is not really something people want to talk about, it’s kind of considered a taboo thing. Growing up, I know for me, periods were always these hidden thing,” Halsey added. “You’re sneaking to the bathroom in high school with your tampon tucked up your sleeve. God forbid someone saw it. And because of that, people aren’t really open about the pain, they’re worried people are going to belittle them.
“[I’m] trying to normalize the conversation and say, ‘It’s okay to talk about reproductive illness, this doesn’t make you weak, this makes you strong and you should be proud and vocal,” the singer explained further. “And the more you talk about it, the more likely you’re going to help one of your friends who might not know that they have it because they may be afraid of speaking about it, too.”
Back in 2017, after undergoing surgery, Halsey commented on how “mentally exhausting and physically painful” the condition is.
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What is Endometriosis?
Confusion may exist about whether endometriosis is linked to cancer, but there’s no research that connects the two together. Although endometriosis may present symptoms similar to endometrial cancer, it is “not cancer,” OB/GYN and oncologist at Cedars-Sinai Medical Center Dr. Bobbie Rimel previously told SurvivorNet.
“Endometriosis is the term for whenever those endometrial cells, those lining of the uterus cells, are outside of their normal place, which is inside the uterus,” Dr. Rimel explained, again adding that it is a benign condition, which means non-cancerous.
Dr. Bobbie Rimel explains the difference between endometrial cancer and endometriosis.
“Endometrial cancer is actually when cells of the lining of the uterus become cancerous and begin to invade the uterus wall,” Dr. Rimel continued. “[The cancer cells] may spread to the fallopian tubes, to the ovaries or the lining of the pelvis or elsewhere in the body.”
According to Johns Hopkins Medicine, endometriosis usually occurs on or near reproductive organs in the pelvis or abdomen, can be found in other areas such as the fallopian tubes, ligaments around the uterus (uterosacral ligaments), lining of the pelvic cavity, ovaries, outside surface of the uterus, space between the uterus and the rectum or bladder.
In rare circumstances, it can also grow on and around the bladder, cervix, intestines, rectum, stomach (abdomen), and vagina or vulva.
According to the World Health Organization (WHO), “Endometriosis often causes severe pain in the pelvis, especially during menstrual periods. Some people also have pain during sex or when using the bathroom. Some people have trouble getting pregnant.
“Some people with endometriosis don’t have any symptoms. For those who do, a common symptom is pain in the lower part of the belly (pelvis). Pain may be most noticeable during a period, during or after sex, when urinating or defecating.”
Some people may also experience the following symptoms:
- Chronic pelvic pain
- Heavy bleeding during periods or between periods
- Trouble getting pregnant
- Bloating or nausea
- Fatigue
- Depression or anxiety
Understanding Ovarian Cancer & How To Lower Risk
Ovarian cancer is sometimes referred to as “the cancer that whispers,” because the symptoms, though not completely silent, can be very subtle.
When detected early, ovarian cancer can have a better than 90% cure rate. But symptoms of the disease – like cramping, abdominal bloating or lower back pain are easy to ignore – meaning only 20% of cases are caught early.
“We don’t have a good screening method, but if you have symptoms, it’s very important that you go to your physician because there might be an opportunity that we can detect it when it’s still early stage,” Dr. Jose Alejandro Rauh-Hain, a gynecologic oncologist at MD Anderson Cancer Center, told SurvivorNet in a prior interview.
Ovarian cancer symptoms can include bloating, abdominal pain, and changes in bowel habits. Some patients mention a feeling of fullness, which reduces their appetite. “It’s very important the patients are not afraid to ask questions to their physicians,” Dr. Rauh-Hain says, “because the sooner we can diagnose the cancer, the better the prognosis.”
Some preventive measures that may decrease ovarian cancer risk in women include:
- Taking birth control pills, specifically, an oral birth control pill that contains both estrogen and progesterone.
- Having children before age 35
- Not using high-dose or long-term hormone replacement therapy after menopause
- Practicing healthy lifestyle habits, such as eating a well-balanced diet, doing moderate daily exercise, and getting enough quality sleep at night
Surgical Steps to Prevent Ovarian Cancer
Women who have a genetic predisposition to this disease, such as a family history or mutations in the BRCA1 and BRCA2 genes, may want to take more radical steps to protect their long-term health. One such step might include having prophylactic surgery–surgery before you show any signs of disease, to prevent ovarian cancer.
The American College of Obstetricians and Gynecologists (ACOG) and the Society of Gynecologic Oncology (SGO) recommend that women with a BRCA1 mutation have surgery to remove their ovaries and fallopian tubes (called salpingo-oophorectomy) once they’re done having children, or at age 35 to 40. Those who carry a BRCA2 mutation should have this surgery by age 40 to 45.
Removing the fallopian tubes along with the ovaries is important. “Something we have learned over the past five or 10 years is that many, if not all, ovarian cancers start in the fallopian tubes and then develop and spread to the ovaries by the time we find them,” says Dr. Karen Zempolich, gynecologic oncologist at St. Mark’s Hospital in Salt Lake City.
In women at risk who choose to have a tubal ligation (also known as getting their tubes tied) to prevent future pregnancies, Dr. Zempolich suggests instead taking out the fallopian tubes completely, to prevent tubal cancers as well as a possible early onset of ovarian cancer later on.
Discussing Your Ovarian Cancer Risk
If you’re concerned about your chances of developing ovarian cancer one day, the best place to start is with your primary care physician or OB/GYN. As part of the decision-making process, your doctor should have your full personal and family health history, so that together you can find the best preventive method for you.
Your doctor will assess your risk, and if necessary, refer you to a genetic counselor for further testing. You may need screening with a CA-125 blood test and transvaginal ultrasound if you are at greater risk for ovarian cancer. If you have a genetic mutation, the genetic counselor and your doctor can walk you through some of the more permanent preventive measures, such as surgery to remove the fallopian tubes, uterus, and/or ovaries.
Whatever steps you do decide to take should be made after carefully weighing your risk of getting ovarian cancer against the side effects of the method used to prevent it.
Contributing: SurvivorNet Staff
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