Q&A: Understanding one’s own body important in identifying vague ovarian cancer symptoms

Key takeaways:

• Catching ovarian cancer at the earliest, most treatable stage is preferable but difficult because symptoms are vague.
• Women should be knowledgeable about their own body to identify possible signs of cancer.

Because ovarian cancer is one of the more difficult cancers to diagnose, it is important for health care providers and women to understand how symptoms present, how to mitigate risk and how to prevent disease progression.

“These days when you have platforms like Meta, or Facebook, having algorithms that block content about normal female things like menstruation, pictures of vaginas, uteruses, ovaries and tubes become sexualized as opposed to being normal anatomy that everyone should know about, whether you’re male, female or just a human,” Melissa A. Simon, MD, MPH, vice chair for research in the department of obstetrics and gynecology and director of the Center for Health Equity Transformation at the Northwestern University Feinberg School of Medicine, told Healio. “Female anatomy should not be blocked content and sexualized, because that’s how you eliminate some of that knowledge that’s important for people who have female reproductive parts to know.”

Healio spoke with Simon about ovarian cancer prevalence in the U.S., difficulties in diagnosing, risk factors, signs to watch for, currently available treatments and the importance of women understanding their own bodies.

Healio: How prevalent is ovarian cancer in the U.S. and what are some risk factors?

Simon: About 19,000 women each year in the U.S. get diagnosed with ovarian cancer, and about 13,000 women will die [each year] from ovarian cancer in the U.S.

It has to do with the epidemiology driven by genetics and family history because some family syndromes, like Lynch syndrome, have a higher risk for ovarian cancer and other certain cancers throughout a genetic or family lineage, that’s most likely why those statistics are as they are. Risk factors for ovarian cancer are family history, age, obesity and not having ever been pregnant or having a child after age 35. Age also is an important risk factor. Ovarian cancer is most common between 50 and 79 years old, so while there are still younger women that get ovarian cancer, that age range puts you at higher risk. In terms of family history, having a history of ovarian cancer — like a family history of ovarian cancer, breast cancer, uterine cancer or colorectal cancer — places you at higher risk. In addition to white European women, we know that Ashkenazi Jewish women also have a higher risk for ovarian cancer.

Healio: What are some signs and symptoms of ovarian cancer?

Simon: Ovarian cancer is not something that we can screen for with a screening test. It’s not like cervical cancer where we have a Pap test, and it’s not like breast cancer where we have a mammogram to screen routinely. Ovarian cancer presents with very vague symptoms like bloating, nonspecific abdominal pain, bleeding after sexual intercourse, and an abdomen that’s growing. These symptoms are vague and could be on the list of symptoms for many different issues. It’s important to visit a primary care provider at least once a year to get checked out, not just for ovarian cancer but just for your health in general.

The other symptoms that are super vague in ovarian cancer are bowel or bladder changes, especially bowel. If there are changes in how often you have a bowel movement, constipation and then early satiety — meaning feeling full earlier than usual and you can’t eat as much as you usually can — all of those things are so vague. It’s very important to know your body well. If you have a family history of ovarian cancer to make sure you meet with a gynecologist, specifically, and even a genetics counselor so that you can make sure you don’t have one of those syndromes, such as Lynch syndrome or a family hereditary cancer syndrome, that puts you at even higher risk of ovarian cancer.

Healio: What are some measures women can take to prevent ovarian cancer development?

Simon: Well, we can’t say you should be pregnant, because that’s a very personal choice, but if you are done with childbearing, we know now that many ovarian cancers start not in the ovary but in the fallopian tubes, and so a bilateral salpingectomy, or a removal of both tubes, helps reduce your risk of ovarian cancer. It won’t eliminate the risk, but for somebody who has a family history of ovarian cancer, that would be one thing to do. Even if you don’t have a family history of ovarian cancer and have other risk factors for ovarian cancer — age, nulliparity, certain European ancestries — those factors put you at higher risk and salpingectomy can help reduce that risk. Those are from newer data, and that tends to be the trend now. If people are finished with their childbearing and want birth control, such as a tubal ligation, we strongly now recommend removal of the tubes as opposed to traditional tubal ligation where you only take a piece of the tube.

Other than that, a lot of the things that put you at risk for cancer in general, such as poor diet or lifestyle, environmental exposures and being obese or overweight, are things that you can [modify] to help mitigate some of the risk of ovarian cancer specifically, but most any cancer as well.

Healio: What are some treatments available for ovarian cancer?

Simon: Treatment depends on the stage of cancer. Going to a gynecologic oncologist is important. In some areas, specifically in the U.S., in some areas of the country there are no gynecologic oncologists, in which case, general surgeons and medical oncologists work together. Gynecologic oncologists are specifically trained to care for women with gynecologic cancers, which include uterine, cervical, fallopian tube and ovarian. It is important to go and get staged. Staging includes certain scans, CAT scans, sometimes MRI, and includes surgery and debulking, which means taking out as much of the tumor as possible depending on the stage of the cancer. Then there are treatments such as chemotherapy and, in some cases, chemotherapy comes before surgery. There are different protocols for different types of ovarian cancer and different stages of ovarian cancer.

Healio: Are there any new treatments being studied to improve outcomes?

Simon: Clinical trials are underway. There are more and more clinical trials right now to study different types of treatment for ovarian cancer, and so if you have ovarian cancer, it’s important to talk to your doctor about the different trials that are available for your specific type of cancer, because each of these trials are specified for a certain type of ovarian cancer and a certain stage. There are things like immunotherapy options, where there are monoclonal antibodies to help deliver targeted therapies for ovarian cancer, and those are some of the more promising treatments.

But surgery, in general, is the main treatment for ovarian cancer and the goal is to get as much of the tumor burden out of the abdomen as possible. Earlier stage ovarian cancer patients, depending again on the type of cancer, but earlier stage, like stage I ovarian cancer, can undergo minimally invasive surgery, like laparoscopic surgery or robotic surgery, as opposed to the traditional, very large, open abdominal incision to clear the tumor.

But it really does depend on the type and the stage, and that’s the issue, right? The issue is that ovarian cancer is hard to screen for because the complaints and symptoms are so vague. So, if you have a cancer that’s hard to screen for because of these vague symptoms that could mean anything — like if you have bloating, a lot of things cause bloating — that means that it’s going to be hard to catch ovarian cancer in its earliest, most treatable stages. The survival rates of stage I ovarian cancer are very high, whereas stage IV ovarian cancer, the most advanced stage with metastases, is very hard to treat and has a high mortality rate. So, that’s really the crux of this, is the importance of understanding your body, knowing your genetics and your family history. I know a lot of people these days do not know their family, or the actual biological parents with whom they were raised. They may be adopted, they may have family members that have been deceased, so they don’t know their full genetic history. If you know that at least one person in your family had ovarian cancer, going to a genetics counselor is important, but that discussion needs to first be had with your gynecologist to understand that risk and to be referred to a genetics counselor.

Healio: Is there anything else you’d like to add?

Simon: Everybody should understand their body, what’s in their body, how it works — not to the extent of a health care practitioner, but know about menstruation, about why we do Pap tests, where the cervix is, how a baby is formed in a woman’s body or a body that has a female reproductive system, how cancer starts, etc. Understanding that helps one to better understand why there are such vague symptoms for ovarian cancer. Even just with breast cancer, being familiar with your breasts, understanding that a doctor isn’t necessarily going to diagnose breast cancer with one breast exam every year, but you, knowing your own breasts, if you feel something that’s different on a monthly basis, you feel something’s different than it was last month, then by all means come into the doctor, come into a clinician who can help figure it out. So, it is important to be proactive about your health and understand what your body has in it.

It all comes down to knowing your body, being as healthy as you can with respect to what foods you eat, exercising, staying within a normal body mass index — which is easier said than done — and if you know you have other risks for ovarian cancer like family history then absolutely understanding that you need to discuss this with your primary care physician and then get referred or your gynecologist and then get referred to the other more specific subspecialties like genetics counseling and gynecologic oncology, which I highly encourage you to do. And it is important to understand that if you are finished with reproductive childbearing, a bilateral salpingectomy is a way to mitigate some of that risk for ovarian cancer.

For more information:

Melissa A. Simon, MD, MPH, can be reached at msimon2@northwestern.edu.