Melony Olgin suffered from sharp pains near her left groin in November 2020. The Goodyear resident went to urgent care and her primary care physician only to be subjected to a variety of tests and diagnoses.
“I just assumed it was a cyst or something associated with my menstrual cycle,” she said.
“But it continued after it would end. One day, the pains were just so bad that I went into an urgent care. The doctor did a physical exam and it felt like a swollen lymph node. She sent me for an ultrasound.”
Olgin was diagnosed with a hematoma, hernia and routine stomach pains.
Frustrated, Olgin became her own advocate. Several months later, she found a Cancer Treatment Centers of America specialist who discovered a mass that was causing her pain.
“I decided to send my images to CTCA, and there was a surgical oncologist willing to look at my scans,” she said. “She said, ‘Thankfully, I think this is a desmoid tumor.’ I wasn’t diagnosed until after another MRI and biopsy in January.”
Desmoid tumors, also called aggressive fibromatosis or desmoid-type fibromatosis, which are rare and often debilitating and disfiguring soft-tissue tumors, have no FDA-approved treatment option. September is Desmoid Tumor Awareness Month.
Nearly 30% to 40% of desmoid tumors are initially misdiagnosed, partly due to a lack of awareness. Many patients, the majority of whom are women, present symptoms such as severe pain caused by compressed nerves or muscles, internal bleeding, difficulty using affected parts of the body and, in rare cases, death.
According to the National Cancer Institute, desmoid tumors are most common in people between the ages of 15 and 60 years. For every 1 million people worldwide, two to four persons are diagnosed with a desmoid tumor per year.
Unfortunately, treatment options are imperfect, such as surgical resection, which has a high recurrence rate, or chemotherapy, which can compromise a person’s quality of life.
“My blessing in all of this is it’s not something that can spread to other organs. I really feel blessed in that regard,” she said.
Since January, Olgin has been through oral chemotherapy treatments, but all failed. She’s preparing to start intravenous chemotherapy.
“They’re technically benign,” she said. “It’s so deceptive. It doesn’t really highlight the fact that these tumors are painful. I’m virtually going through all the same treatments as someone with cancer.”
Olgin grew up in Peoria and attended Sunrise Mountain High School. She said she was “really healthy.”
“I always get my physicals every year, and my bloodwork always comes back as normal,” she said. “I knew something was off, though, as far as the pain. It was just something new, and I knew it was out of the ordinary.”
Olgin said the desmoid tumor has taken an emotional toll on her and her family. It was terrifying when she was diagnosed with it. Numerous options were “thrown at her.”
The physical toll has been equally as tough. Olgin lost her energy, which cut her activity level.
“You’re just hoping and praying you’re making the best decisions for yourself,” she said. “It’s a little hard. I’ve struggled with self-image. I’ve gained a lot of weight.
“I kept thinking, ‘Why am I putting on so much weight?’ I’ve since learned it’s from the estrogen feeding into the tumor.”
She attempts to go for 15-minute walks but soon thereafter has to call it quits.
“Dealing with those things and being a mom, it’s hard keeping up with those responsibilities,” Olgin said.
That’s especially true with debilitating side effects from treatments. At Cancer Treatment Centers of America, Olgin tried tamoxifen with sulindac for about six months. It caused cysts on her ovaries.
The next course of action was Gleevec, another chemotherapy drug that’s used to treat leukemia.
“I felt really sick the first two weeks,” she said. “My body did adjust but, unfortunately, it didn’t do anything. The tumor was still growing.”
While she awaits IV chemotherapy, Olgin is taking it one day at a time.
“I’ve been doing OK,” she said quietly. “I’m still taking it day by day, treatment by treatment — one step at a time. The best thing is just keeping a positive attitude.”