"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," Nick says. "And, yeah, it was pretty nerve-wracking."
Nick landed in that anxious scenario in 2016, when he was 26. Busy working, spending time with his girlfriend, and exploring a newfound passion for photography and videography, Nick's health wasn't in the forefront of his mind. Then one day, he felt a painless lump in his left forearm.
When he had it evaluated, a doctor told Nick that the lump was either a ganglion cyst or a lipoma — both noncancerous growths. But Nick noticed the lump growing and went to see another doctor who recommended a biopsy. The results revealed a very different diagnosis. The lump was a cancerous tumor called an epithelioid sarcoma — a rare, slow-growing type of soft tissue cancer. Nick's tumor already had progressed to 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. So after Nick's diagnosis, Dr. Okuno and the rest of his care team quickly developed a plan of action.
A world-renowned expert in sarcoma, Dr. Okuno is the medical chair of Oncology for Mayo Clinic Health System in Northwest Wisconsin. He also sees patients at Mayo Clinic in Rochester. In addition to Dr. Okuno, Nick's care team included a host of specialists — oncologists, radiation oncologists and surgeons — as well as other professionals who could help Nick navigate his cancer journey.
"We have the cancer guide, the social worker who can help with financial issues and emotional issues. We have the chaplain. We have a nutritionist. We are very lucky to have all of those services right here in Eau Claire," says Kaye Holt, a nurse practitioner in Oncology.
Nick had six rounds of chemotherapy and 25 radiation therapy treatments in Eau Claire. After that, he went to Mayo Clinic in Rochester, where Peter Rose, M.D., an orthopedic oncologist, performed surgery to remove the tumor.
"If I don't talk and other people don't talk, we really get nowhere."Nick Saleum
Nick was grateful to be able to receive most of his treatments close to his home. But the experience was grueling as he endured side effects from his treatment. "Everything just didn't taste good," Nick says. "I thought it just tasted like eating cardboard for the most part."
As he went through cancer treatment, Nick learned more about sarcoma. He began sharing his personal journey through online videos. Since then, Nick 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," he says.
With therapy and regular monitoring, Nick's recovery went well. But in November 2018, Nick felt a painful lump in his bicep. An MRI, then a biopsy, confirmed that the sarcoma had come back.
In January, Nick underwent a second surgery with Dr. Rose in Rochester to remove the new tumor. He also had radiation therapy before the surgery, as well as intraoperative radiation therapy — a plan coordinated by Sarah James, M.D., a Mayo Clinic Health System radiation oncologist in Eau Claire, in conjunction with her colleagues in Rochester.
The treatment Nick received for epithelioid sarcoma was a significant step forward from the care provided to patients with this disease in the past, according to Dr. James. "Historically, these tumors were treated with amputation up front," she says. "Limb-sparing 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."
"The Mayo Clinic team — they've been great to me. I can't think of anyone else who could take up all this, so I'm in the right hands."Nick Saleum
Nick knows that the likelihood of recurrence with his type of sarcoma is high, but that hasn't dampened his spirits. His care team says Nick never looks back, and his energy is focused on using his situation to helping others.
"His passion for media and sharing his patient experience is 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."
Today, Nick's working hard to regain strength in his hand with ongoing occupational therapy sessions in hopes of one day getting back behind the camera lens. He also has follow-up appointments with his Mayo team every three to four months to monitor his condition. And he continues to be passionate about advocating for himself and others living with epithelioid sarcoma.
"The Mayo Clinic team — they've been great to me. I can't think of anyone else who could take up all this, so I'm in the right hands," Nick says. "I've got the upper hand at the moment. Going through all this has made me a better person, a stronger person."
Note: A version of this story previously was published in Hometown Health.