My Belly Button Saved My Life Says 44-Year-Old With Ovarian Cancer Diagnosed From A Small Nodule

“I had a small growth, the size and color of a pencil eraser, in my navel,” she wrote. “When the dermatologist removed it, he thought it was something harmless. The biopsy said otherwise.”

A blood test revealed elevated levels of a protein called CA[Cancer Antigen]-125 in her system, which can sometimes indicate the presence of a tumor. Then, a CT scan found tumors “the size of small citrus fruit” in each of her ovaries, and a third tumor “the size of a larger citrus fruit” in her abdomen. Her cancer had spread up through my umbilicus and out of her belly button which was why she had the growth.

Dr. Leslie Boyd, the head of gynecologic oncology at NYU Perlmutter Cancer Center, told SurvivorNet that her navel growth was called a “Sister Mary Joseph nodule” which was named after a legendary nurse who cared for women with ovarian cancer at the Mayo Clinic.

“Before the days of CT scans, this was an indication to the team that the disease had spread widely,” Dr. Boyd said. “It is not specific to ovarian cancer, other intra-abdominal cancers, including GI cancers, can be the underlying cause.”

Needless to say, Neumayer is grateful for the growth.

“If my cancer hadn't found its way out of my body through my navel, it probably would not have been discovered until after it disrupted other essential organs like my liver, kidneys or lungs,” she wrote. “It could have been a death sentence.”

Her treatment began with three rounds of chemotherapy only to find out that her rare subtype low-grade serous ovarian cancer generally did not, and usually does not, respond to this treatment.

So, in June 2020, she underwent surgery to remove her ovaries, fallopian tubes, uterus, omentum (fatty tissue that supports the intestines), cervix and even 10 inches of colon since the tumors had pierced her colon.

“She removed all the cancer she could see, and my blood work following surgery showed lowered levels of CA-125 as well as another tumor marker called human epididymis protein 4 (HE4),” she wrote. “Follow-up CT scans have shown no evidence of residual disease.”

And while Neumayer is glad to be rid of the cancer, she knows her cancer journey is not necessarily over. Eighty percent of women with ovarian cancer enter into remission, but 70 to 80 percent of those women during the next five years may have a recurrence, according to Dr. Beth Karlan, a gynecologic oncologist at UCLA Medical Center.

“I am likely to have a recurrence eventually. Even with the removal of all those organs, the cancer can come back elsewhere,” Neumayer wrote. “But I don't feel any closer to dying than I was a year ago. If it comes back, by the time it comes back, I hope ovarian cancer research will have led to treatment for all future expressions of my cancer."

Understanding Ovarian Cancer

Ovarian cancer is when the ovaries which produce the sex hormone, estrogen, as well as eggs become cancerous. Women have two ovaries, one on either side of the uterus.

The fallopian tube, which brings the egg from the ovary to the uterus for fertilization, is actually where many ovarian cancers begin. First, a few cancerous cells develop on the fallopian tubes, then these cells stick to the ovaries as the fallopian tubes brush over the ovary. From there, the cancerous cells grow to form a tumor.

Your risk for ovarian cancer may be increased if you have gone through menopause, have a gene mutation like BRCA1 or BRCA2, are obese or overweight, had your first pregnancy after age 35 or never carried a pregnancy to full-term, have a family history of cancer or used hormone replacement therapy. You should talk with your doctor about your potential risk for the disease.

Symptoms of Ovarian Cancer

Looking back, Kari Neumayer says there were signs of her cancer she might’ve missed.

“More than a year after my diagnosis, after several months being cancer-free, I recalled intermittent sharp chest pains in recent years,” she wrote. “My internet research at the time convinced me it was heartburn… Waiting it out at home was preferable to sitting in an emergency room for hours, and I never thought to mention it to anyone.”

She even had back pain that could have been caused by her cancer.

“In hindsight, I did have excruciating back pain six months before I was diagnosed,” she wrote. “I thought I'd strained my back lifting my 85-pound elderly dog.”

Neumayer will never truly know if these were symptoms of her cancer, but it’s important to think about all the potential signs of the disease. Ovarian cancer is known as the cancer that whispers because symptoms are vague and sometimes similar to regular menstrual cycle fluctuations. Dr. Beth Karlan says that ovarian cancer can be difficult to recognize with its subtle symptoms.

Ovarian Cancer: The Cancer That Whispers

"Ovarian cancer does not have any specific symptoms," Karlan said in an earlier interview with SurvivorNet. "It's often referred to as the cancer that whispers in that it has symptoms that are really very vague… and nothing that may bring your attention directly to the ovaries."

But Dr. Karlan still wants women to keep an eye out for a variety of possible symptoms.

"The symptoms include things like feeling full earlier than you usually would when your appetite is strong… Feeling bloated," she added. "Some changes in your bowel habits. Some pain in the pelvis. These are symptoms women may have every month. These are not very specific. But what we've found from multiple studies, it's this constellation of symptoms."

RELATED: Annual Ovarian Cancer Screenings Do Not Save Lives, Study Suggests; Women Should Listen for Signs of the 'Cancer that Whispers'

According to Dr. Ramez Eskander, a board-certified gynecologic oncologist and assistant professor at UC San Diego School of Medicine, Kari Neumayer’s cancer journey highlights the fact that ovarian cancer “can present in a heterogenous manner.” In other words, this cancer can cause varying clinical symptoms and physical exam findings.

“Sometimes, the presenting symptom can be an enlarged lymph node at the base of the umbilicus, although in [Neumayer’s] case, it appeared to be a skin lesion,” he said. “Ultimately, the need remains for women to remain vigilant and aware, communicating any new or unusual symptoms to their physicians for appropriate evaluation.”

Dr. Stephanie Wethington, director of the gynecologic oncology survivorship program at Johns Hopkins Medicine, previously told SurvivorNet that prevention for ovarian cancer is what we should focus on.

"We must remember that prevention is key and advocate for all women to discuss their family history and individual risk factors with their doctors and ask whether there are risk reducing options available to them," Dr. Wethington wrote.

Our advice to readers: See your doctor if you feel like something is off. Given that ovarian cancer can have no symptoms or a myriad of symptoms that you might easily brush off as nothing, it's important to always seek medical attention when your gut is telling you something might be wrong. That doesn't mean we should assume the worst every time we feel bloated or have a change in appetite, but it does mean that we should always try to listen to the signs our body is giving us.

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