Ovarian cancer has been called the silent killer because women usually have no idea they have it.

Dr. Kellie Schneider

Novant Health gynecologic oncologist Dr. Kellie Schneider characterizes it more as being “very quiet.”

“The problem is the symptoms that are associated with ovarian cancer are a lot of the symptoms that women have anyway,” Schneider said, pointing to pelvic pain, feeling full quicker than usual after eating, and changes in bowel or bladder habits. “There are so many other things that can cause those symptoms.”

Schneider said 75% of women with ovarian cancer are in stage 3 or 4 (meaning more advanced) when they're diagnosed. But she said there are subtle symptoms that she sees that can help with earlier detection. Schneider, who cares for patients at Novant Health Cancer Institute - Elizabeth, shares some signs of what to look for, what’s changing with treatments and when it makes sense to surgically remove ovaries to prevent cancer.

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How common is ovarian cancer?

It isn’t as prevalent as some might think. Only one in 72 women will get ovarian cancer, compared to one in eight that get breast cancer and one in 12 that get endometrial cancer.

Have the outcomes of those with ovarian cancer improved at all in recent years?

For a long time, we were a little bit below 50% of people being alive at five years. Today it’s closer to the upper 50s. Some of that is there's newer maintenance regimens, medications called parp inhibitors, that for certain groups of patients can really prolong their remission. … And a new treatment came out last year called Elahere that's helpful for certain patients that have a certain marker. With that, we're seeing people live longer.

For women who are high risk for breast cancer, mastectomies might be done for prevention. Do you ever recommend women have their ovaries surgically removed as a mode of prevention?

We used to tell people if you have a first-degree relative (parent or sibling) that had it, you should get your ovaries out. What we realized is that, really, only 15% of the time is ovarian cancer going to be genetically inherited.

In 2013, the Supreme Court passed a ruling that, in effect, led to genetic testing being much more affordable and much more comprehensive. So they're not just testing for BRCA1 and BRCA2, they test now for 30 different known genetic mutations that can cause ovarian cancer.

So who should get genetic testing and when?

Anybody at any age who has a first- or second-degree family member with ovarian cancer. First degree is somebody who is in your generation or one generation away from you, so sister mother, daughter. Second generation would be one generation back, so grandmother. And if you were tested before 2013, then you should be retested. If you are positive for one of those, the majority of the time we do still recommend surgery. Really that is the only thing that's been shown to change survival from ovarian cancer: to take out the ovaries and the fallopian tubes.

Why the fallopian tubes?

As we started doing more surgeries for people that do have the genetic risk, we have found pre-cancers on the fallopian tubes, on the edges. The fimbriae are the part that grab the egg from the ovary. We're thinking probably a large part of what we've always thought were ovarian cancers were actually fallopian tube cancers.

Really every woman, if she having any pelvic surgery and she knows that she's done having children, should have her fallopian tubes taken out. They shouldn't necessarily have surgery just to do that because there are the risks of surgery, but if surgery is planned anyway, the tubes should definitely come out.

Why keep ovaries at all after childbearing years. What do they do?

There was a study that came out called the Nurses Health Study that showed that if we take the ovaries out of every woman that is less than 65, we increase her risk of dying from heart disease and developing osteoporosis.

We've looked at that a little bit harder and for those up to age 55, we do see a difference in how people do with their ovaries out. The old thinking – that once you go through menopause ovaries don’t help you anymore – is wrong.

They really do continue to release some estrogen that continues to help keep your heart and your bones healthy. And statistically a woman is a lot more likely to have issues with heart disease or osteoporosis than she is going to have with ovarian cancer. So we tell people if you don't have a genetic mutation, there really isn't a reason to take your ovaries out.

Are there symptoms people should pay extra close attention to besides pelvic pain, feeling full and bowel and bladder changes?

The most common thing I hear from patients is frequent urination. They’ll say they have what they thought were urinary tract infections, because of the frequency or some pain with urinating, and then they didn't test positive. Sometimes, they did (test positive for UTI). The bladder is really thin-walled, and it’s pretty easy for it to get irritated by something happening in the pelvis.

Are there any big myths you see with ovarian cancer you would like to clear up?

A big myth that we have a lot is “I got my Pap test.” I don't think people completely understand what goes on in the GYN office and what those tests are for. The Pap test specifically looks for cervical cancers. It does not screen for ovarian or endometrial.

What is the usual course of treatment once someone has been diagnosed with ovarian cancer?

If it’s early stage, we always do surgery first and then generally chemo. If it’s advanced stage, we do some chemotherapy first because it does robustly respond to chemo. The standard for most stage 3 and 4 patients is we do some chemo first, then surgery and then chemo again.

How well does it respond?

I have people who think that being told they have ovarian cancer is almost in line with being told you have pancreatic cancer. It's not. For most people, it responds well to chemotherapy. Of patients that are stage 3 or 4 when we diagnose them, we will get at least 75 to 80% of them into remission. …. (That) it does come back is the hardest thing, and that's what we're trying to work on now. But we're pretty good at getting it in remission.

What else would you like people to know?

It’s nothing to do with ovarian but with endometrial. I wish people would know any bleeding after menopause is not normal. It's amazing how many people will come in with endometrial cancer that started bleeding 10 years after menopause. And they’ll say, “I thought I started my period again.”

How life-threatening is endometrial cancer?

The good thing with most endometrial cancers is they are, for the most part, pretty slow-growing. And most of them present with bleeding very early on, so they give us the sign. The vast majority of them are caught at stage 1 because of that bleeding.