A voice for epithelioid sarcoma: Cancer survivor shares story to help others

“Scanxiety” is how Nick Saleum, a 29-year-old Eau Claire, Wisconsin, resident, describes waiting for his cancer diagnosis.

“You’ve got the scan on Friday, and then you’re waiting the weekend until Monday comes along. And, yeah, it was pretty nerve-wracking,” Nick says.

In 2016, Nick was 26. He was busy working, spending time with his girlfriend and discovering a newfound passion for photography and videography. Then one day he felt a painless lump in his left forearm. One doctor misdiagnosed the lump as a gangling cyst or lipoma, but Nick noticed the lump growing and went to see another doctor. A biopsy revealed a rare, cancerous tumor: epithelioid sarcoma. He was already stage 3.

“Sarcomas are rare,” says Scott Okuno, M.D., Nick’s oncologist at Mayo Clinic Health System in Eau Claire. “More likely than not, you don’t have a sarcoma if you have a lump. However, there are certain signs that we always recommend that you get checked out. If you have an enlarging lump that is deep — not superficial, but deep — and larger than the size of a golf ball, you should be evaluated.”

Left untreated, a sarcoma can spread through the soft tissues of the body.

A TEAM EFFORT

Dr. Okuno is the medical chair of oncology for Mayo Clinic Health System in northwest Wisconsin and also practices at Mayo Clinic’s Rochester, Minnesota, campus. He also is a world-renowned expert in sarcoma and just one member of Nick’s coordinated care team, which includes oncologists, radiation oncologists, surgeons and many more, according to Kaye Holt, a nurse practitioner in Oncology at Mayo Clinic Health System in Eau Claire.

“We have the cancer guide, the social worker who can help with those financial issues and emotional issues,” Kaye says. “We have the chaplain. We have a nutritionist, so we are very lucky to have all of those services right here in Eau Claire.”

Following the initial diagnosis, Nick underwent six rounds of chemotherapy and 25 radiation treatments in Eau Claire. After that, he went back to Rochester, where an orthopedic oncologist performed surgery to remove the tumor.

While the experience was grueling, Nick’s arm was spared from amputation, and he was grateful to receive the majority of his treatments close to his home.

“Everything just didn’t taste good,” Nick says of the side effects of his treatments. “I thought it just tasted like eating cardboard for the most part.” Nick says that even water tasted bad.

During this time, Nick learned more about his sarcoma and began sharing his personal journey through online videos. He has become an advocate — creating awareness, pushing for research funding, asking doctors lots of questions and helping others through a Facebook group. He even donated his tumor for epithelioid sarcoma research.“If I don’t talk and other people don’t talk, we really get nowhere,” Nick says.

FACING A RECURRENCE

With therapy and regular monitoring, Nick’s recovery was going well, but in November 2018, Nick felt a painful lump in his bicep. An MRI, then a biopsy, confirmed a recurrence of the sarcoma.

In January, Nick underwent a second surgery with Dr. Rose in Rochester. During this surgery, the tumor was removed and his limb was again spared from amputation. He also underwent preoperative and interoperative radiation — a plan coordinated by Sarah James, M.D., a Mayo Clinic Health System radiation oncologist in Eau Claire, and her colleagues in Rochester.

“Historically, these tumors were treated with amputation up front,” Dr. James says. “Limb sparing is what is standard now. Certainly, in the setting of recurrence, the limb sparing could only be done because we have experts here at Mayo to do that.”

Nick knows recurrence with his type of sarcoma is high and that he eventually may lose his arm. But make no mistake, there is no quit in Nick. His cancer team says he never looks back — only forward. He’s working hard to regain strength in his hand and hopes to one day get back behind the lens.

“His passion for media and with sharing his patient experience is just quite good and quite refreshing to see,” Dr. James says. “My wish for Nick is for him to have a long, happy life, cancer-free from now on.”

“The Mayo Clinic team, they’ve been great to me,” Nick says. “I can’t think of anyone else who could take up all this, so I’m in the right hands. I’m still here for the most part, and I’ve got the upper hand at the moment. Going through all this has made me a better person, a stronger person.”

Nick will undergo regular monitoring with his Mayo team every three to four months. He continues with occupational therapy sessions for his hand, along with advocating for himself and others living with epithelioid sarcoma.