How Maria Menounos’ brain tumor symptoms clued her in

Maria Menounos was convinced she was being a hypochondriac.

When the actress, author, TV host, journalist, former E! News anchor, and host of the SiriusXM radio show "Conversations with Maria Menounos" first began experiencing intense ear pain in early January, she dismissed it as an ear infection. "When it didn't get better after about a month, I went to the doctor," she recalls. After determining that her ears were fine, the doctor asked if she'd had any other symptoms.

Menounos began rattling off other strange things she'd noticed: headaches on set every day, dizziness when she stood up between news segments, and slurred speech. As she recounted her symptoms to the doctor, everything began to connect in her mind. "I said, 'I know you're going to think I'm crazy, but I feel like I have a brain tumor like my mom.'"

Tumor coincidence

Litsa Menounos, Maria's mother, had been diagnosed with glioblastoma multiforme (GBM), a malignant and difficult-to-treat form of brain cancer, at the end of August 2016, at age 61. Menounos was taking an active role in caring for her mother as she underwent radiation and chemotherapy.

Menounos waited for the doctor to laugh and dismiss her concerns—but he didn't. "He said, 'I don't want to alarm you, but I don't like what you're saying. Let's get an MRI to be safe,'" she remembers. But when Menounos returned to work and focused on drinking more water to stay hydrated, the symptoms seemed to go away. Like many caregivers and busy women, she put her own health on the back burner as she juggled looking after her mother and managing her thriving career. "I decided that I'd clearly been out of my mind, and I had my assistant postpone the MRI appointment," she says.

In March, another symptom cropped up: blurry vision. But Menounos didn't have time to think about it, because her mother's brain tumor had begun to grow again for the first time since she'd been diagnosed. "We were all focused on that," Menounos says.

Urgent MRI

At the end of April, Menounos' assistant reminded her that the MRI she'd postponed in February had been rescheduled for that Friday at 10:30 p.m. "I remember thinking, 'Who has an MRI on a Friday night?' But it's not like I had this big social life, so there was no way I could say I couldn't do it."

So on a late spring night in Los Angeles, Menounos and her fiancé, writer and producer Keven Undergaro, arrived at UCLA Medical Center for the MRI. The doctor's order had originally been for an MRI without contrast, a material sometimes used to make certain tissues appear more clearly on the scan. "But when the technician took me out of the machine after the first scan, he said, 'I'm so sorry. We have to do this again. The radiologist just reviewed the image and would like it with contrast.' And I thought, 'Oh boy, here we go.' I knew."

Meningioma revealed

A golf-ball-sized tumor called a meningioma was pressing down on Menounos' facial nerves. "When they gave me the official diagnosis, I actually started laughing," she says. "I was just like, I can't believe this could possibly be happening again in my household." Unlike her mother's tumor, the meningioma was slow-growing and almost certainly benign—but that didn't mean it wasn't dangerous. If it continued to grow, the tumor could cause worsening headaches, balance problems, speech impairments, and other potentially disabling symptoms.

For the next two months, as Menounos consulted with Keith L. Black, MD, chair of the department of neurosurgery at Cedars-Sinai Medical Center in Los Angeles—who was also caring for her mother—she kept her condition secret, not just from colleagues and friends but from her parents as well. Her symptoms continued—agonizing headaches, slurred speech, lightheadedness, and exhaustion—but she successfully hid them. "When you get a diagnosis like this, you usually rush to tell your parents. But I couldn't, because they were both in such rough condition," she says. "My mom wasn't doing very well then, and I just couldn't put that burden on her or my dad."

Sharing the news

Other than Undergaro and her best friend, Menounos told no one, and kept working at E! as she prepared for surgery. Finally, at the end of May, with the procedure scheduled for June 8—her 39th birthday—she told one of the network executives. "She said, 'Go! Go get prepared, get ready, rest up,'" Menounos recalls. "And it was only when I stopped working that I realized how much pain I was in. I had shushed my body for so long. Anytime I had a headache or any pain, I was just like, 'I don't have time for you, I'm busy.' That was my big lesson in all this: You really have to put your health first. As women, we're caregivers and we want to be everything to everyone, but then we're nothing to ourselves."

Menounos debated shielding her parents from the news. "We tried to figure out workarounds—like, maybe I could go in and have the surgery and then tell them I had to travel for work for a few weeks," she says. "But I didn't want to create an environment of lies."

Three days before her surgery, she and Undergaro went to see her parents. "When we said, 'There's something we need to tell you,' their eyes lit up. Then we had to tell them I wasn't pregnant," she says. "It was awful. And then I had to go through everything with them and explain it to them almost like a teacher would: My tumor is not cancerous. It's just a foreign object in my brain that we need to remove."

Challenging recovery

Menounos was determined to face her recovery from the seven-hour surgery with a positive attitude. "Because of everything I had been through with my mom, as soon as I knew that this was benign, I felt like I could get through anything."

Despite a successful operation and her own determination, Menounos had trouble coping with the lingering side effects following her surgery. More than two months later, in mid-August, she was still experiencing nausea, dizziness, and double vision. "Week by week, I saw a marked difference, but there was a point where I was just like, 'Why am I not getting better?' I was frustrated and having a really hard time with it," she admits.

A visit from a friend who had been through a similar surgery helped her reframe her perspective. "She told me that it took her months to get back to where she was before. So I realized I had to give myself more time to rest and to properly heal," Menounos says. "For example, my jaw still isn't right. Chewing is really difficult, because the fifth facial nerve controls that, and that's where my tumor was. So I'm just going to have to be patient." She's still hosting her SiriusXM radio show, but she resists the urge to push herself too hard. For example, the only exercise she's doing at this point is walking.

Helping others

As of November, Menounos' mother was still doing well. "Mom's MRIs are stable and slightly better each month," Menounos says. She's continuing on the same treatment: monthly chemotherapy and Optune, a device that emits wave-like electric fields called tumor-treating fields (TTFields) that inhibit cancer cell replication and cause cancer cell death.

Inspired by her friend, Menounos has assigned herself the role of supporter for others who are on the same journey. She maintains an electronic folder of her mother's treatment protocols, as well as the complementary therapies they have pursued for both her own condition and her mom's.

"I feel like I have to deploy," she says. "The second someone says they are dealing with this, I send them a link to the folder and guide them as much as I can. If I have the ability to help them know what to expect, that's what I'm here for. That's part of my purpose now."

Meningioma 411

Meningiomas comprise about one-third of all primary brain tumors, according to the American Brain Tumor Association. Usually benign, meningiomas develop in the meninges, the layer of tissue that lines the brain and the spinal cord. Although these tumors almost never actually grow in the brain itself, they can compress brain tissue, nerves, and blood vessels, and are categorized as brain tumors.

Meningiomas typically grow very slowly and can be quite large before they are discovered. The most common symptoms are headaches and arm and leg weakness; other symptoms may include seizures, visual problems, and personality changes. Depending on the location and size of the meningioma, however, some patients have no symptoms at all.

Surgical treatment

Like actress, author, and TV host Maria Menounos, most people with sizeable meningiomas undergo surgery to remove the tumors. In some cases—for example, if the tumor is difficult to remove safely because of its location—radiation, generally delivered by a device called the Gamma Knife, may also be used to shrink the meningioma. And in other cases, doctors may choose to monitor the tumor carefully and not operate right away.

Coincident tumor

Less than a year before her own diagnosis, Menounos' mother had been diagnosed with glioblastoma multiforme (GBM), a malignant and difficult-to-treat brain cancer. When Menounos told her mother about her meningioma, she had to reassure her that their two diagnoses had nothing to do with each other—it was just an extraordinary coincidence. "When people have cancer, they often worry that they may have passed on the risk of cancer to their children," says neuro-oncologist Alyx B. Porter, MD, assistant professor of neurology at the Mayo Clinic in Phoenix. "When an adult child becomes ill so soon after the parent, it's natural to feel some level of worry or guilt. But for the most part, neither glioblastoma nor meningioma is a type of tumor that runs in families."

Glioblastoma guide

A glioblastoma is an aggressive malignant tumor that develops in the astrocytes—star-shaped cells that comprise the supportive tissue of the brain. Making up about 15.4 percent of all primary brain tumors (tumors that start in the brain), glioblastomas are the most common type of malignant brain tumor, according to the American Brain Tumor Association (ABTA).

Standard treatment begins with surgery. "The goal is to remove as much of the tumor as possible without damaging areas of the brain important for neurologic function," says Alyx B. Porter, MD, assistant professor of neurology at the Mayo Clinic in Phoenix. "This can be challenging, particularly with tumors located in the speech and language or motor centers."

Tailored treatment

After surgery, the tumor tissue is analyzed to identify genetic signatures that might suggest individualized treatments or experimental therapies. "We know that people with certain types of genetic mutations respond differently to different therapies," says Lynne P. Taylor, MD, FAAN, co-director of the Alvord Brain Tumor Center at the University of Washington in Seattle, and co-author with Dr. Porter of Navigating Life with a Brain Tumor. "Genetic screening for these mutations may help doctors choose the best course of treatment. For example, patients with an inactivated MGMT gene (known as MGMT promoter methylation) are predicted to have an improved response to therapy. The medical team should screen for molecular markers like this."

Ongoing therapy

"Patients newly diagnosed with GBM undergo a six-week course of temozolomide (Temodar) along with radiation," says Patrick Wen, MD, FAAN, professor of neurology at Harvard Medical School and the director of the Center for Neuro-Oncology at Dana-Farber/Brigham and Women's Cancer Center. "The treatment then continues in conjunction with six months of temozolomide."

"We now know that giving temozolomide during radiation and for at least six months after radiation improves overall survival," says Dr. Porter. Median survival for people who undergo this course of treatment—known as the Stupp protocol after Roger Stupp, a Swiss oncologist and chief of neuro-oncology at Northwestern University Feinberg School of Medicine in Chicago—is about 14.6 months, and 26.5 percent of patients may survive for two years. However, the phase 3 study that established the Stupp protocol as standard of care also found that almost 10 percent of patients with glioblastoma may live five years or longer, Dr. Wen notes.

Hopeful prognosis

"This is not a curable disease," says neuro-oncologist Lisa DeAngelis, MD, FAAN, chair of the department of neurology at Memorial Sloan Kettering Cancer Center in New York. "But those of us who do this all the time have patients who have survived many years, sometimes just with standard-of-care treatment, not anything experimental."

Promising device

One of the newest treatments for glioblastoma is a device called Optune, which Litsa Menounos, mother of actress, author, TV host, and journalist Maria Menounos, uses. Approved by the US Food and Drug Administration in October 2015, Optune delivers wave-like electric fields called tumor-treating fields (TTFields) that inhibit cancer cell replication and cause cancer cell death. Adhesive patches that transmit the TTFields are attached to the scalp, and patients carry a backpack that holds the Optune device and battery.

Final results of a phase 3 trial presented by Dr. Stupp at the Annual Meeting of the 2017 American Association for Cancer Research showed that patients who wore the Optune device for at least 18 hours a day while also receiving temozolomide had a 37 percent reduced risk of death compared to those on the standard therapy alone. The five-year survival rate for Optune patients was 13 percent.

Should the device be worn longer? That's still an unknown, says Dr. Porter. "Everybody handles the length of time differently. Some providers are recommending that it be worn for at least a year, while others are recommending it be used indefinitely. It really is part of the up-front standard of care now, but knowing when to stop it is a challenge."

Device downsides

For the Optune patches to adhere properly, the scalp must be shaved and reshaved regularly. "Once the hair starts to grow, it lifts the cap with the patches off the scalp, so you need to have your entire scalp shaved once a week," says Dr. DeAngelis. "The new version of the device approved in 2016 is smaller and lighter, but it's still not a little thing you can clip to your belt. You can potentially put a baseball cap or wig or headscarf over the electrodes, but they're still connected through wires to the battery pack, extending down from your head into the battery pack."

That can be a deterrent for some people. "Some of my patients have told me they feel like their disease becomes a scarlet letter with this noticeable device applied to their scalp," says Dr. Porter. "They live with the disease every day; they don't want to see it in the mirror as well." The cap can also cause skin irritation, so many patients need a break after six months. But Dr. DeAngelis and Dr. Porter have also had patients who have worn Optune for two years straight. (Dr. DeAngelis and Dr. Porter were not involved in clinical trials for Optune, and neither receives payment from the manufacturer.)

Clinical trial opportunities

Dr. DeAngelis also encourages patients with glioblastoma to seek out clinical trials. "We need better treatments, and many active and open clinical trials are available right now. The data suggest that people tend to do better overall if they participate in a clinical trial," she says. "Clinical trials are not just a last resort."