By Mara Klecker

Bev Johnson figured the abnormal bleeding she was experiencing was a side effect of her IUD losing efficacy. After all, her annual exam in September hadn’t revealed anything abnormal. A couple of months later, she went to remove a tampon and felt a mass in her vagina.

“It just didn’t feel right,” Bev said. As an OBGYN physician’s assistant, she knew enough to be concerned. She quickly got an appointment with a gynecologist who, like her colleagues, thought the mass may be a prolapsing fibroid. But Bev had no history of fibroids and trusted her gut feeling so she pushed for a biopsy. She rearranged her own patients’ appointments that day so that she could don a patient gown herself.

A week after the biopsy, Bev got a phone call. The doctor on the other line said Bev had something that the doctor had never seen in her 18 years of practice: vaginal mucosal melanoma. Mucosal melanoma accounts for about 1.4% of all melanoma. About 50% of mucosal melanomas begin in the head and neck, and most of the remaining 50% begin in the anus or rectal region and the female genitals. Not only is it rare, but it tends to develop later in life with a median age of diagnosis of 70.

Bev was just 47 when her diagnosis came.

“I was the youngest they’d ever seen,” she said.

Bev is grateful she caught it early before it metastasized, but once she started reading about the diagnosis, she said it “scared the bejeezus out of me.”

“I thought ‘This does not look good and I’m probably going to die,’” she said.

But the shock turned into resolve, Bev said. She started calling old colleagues of hers and asking for a specialist who could help.

“I just kept saying ‘We’ve got to find someone with experience with this,” she said. By December, she was directed to MD Anderson Cancer Center in Texas. At that point, she decided to tell her three children, ages 7, 15 and 16, about her diagnosis.

“They asked me if I was going to die,” she said. “That’s one of the hardest things you have to talk about with your kids.” She reassured them that the cancer was found early and that she was going to get the “very best care.”

Bev opted to try immunotherapy and radiation to shrink the tumor to a point where it could be removed by surgery without disrupting her bladder function. She hopes to avoid a pelvic exenteration, meaning the removal of pelvic organs.

The treatments have worked to reduce the size of the mass, though they came with their own painful side effects. The radiation left Bev with the worst rash she’s ever seen and caused pimples, papules and blisters on her vagina.

“I cried every day for about a week,” she said. But because she was on immunotherapy, she couldn’t take steroids so she treated the rash with Benadryl and topical creams. “It was a solid two weeks of insufferable pain but it got better and to have the mass reduced – it was all worth it,” she said.

Bev’s tumor is still not resectable and she’s due for more scans in August.

For now, she remains focused on becoming a survivor, advocating for herself and others with the disease, and serving her patients as best she can.

“This experience has really taught me to be more thorough and to listen to a patient’s history,” she said. “Now I’m on the other side of this.”

There’s a saying in medicine that if you hear hoofbeats, it may sound like a horse but it could still be a zebra. The takeaway is to never instantly rule out an explanation or possible diagnosis simply because it’s rare.

“My message now is that I want my patients and all patients to really listen, to be in tune with their body and always advocate for themselves,” she said. “Sometimes you have to trust your body and tell your doctor that something is wrong.”

That’s one of the messages she shares with other members of a Facebook group called Mucosal Melanoma Warriors. The group hosts a Zoom with 12-20 people every Saturday morning. Members tune in from all over the world to discuss where they are in their treatments as well as their own feelings and experiences.

“We really try to provide that empathy and camaraderie,” Bev said. “I attribute a lot of my sanity to that group.”

One of the topics that often comes up is how hard it is to explain the diagnosis to others, who associate the word “melanoma” with a mole on the skin. She is also pushing women to understand the importance of gynecological exams even after they are done having children since most gynecological cancers are found after age 40.

“It’s so important to get this information out there,” Bev said. “Cancer is cancer and pain is pain. I just want people to be aware of mucosal melanoma and have patients know there are some answers and support.”

 

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