Dealing with Desmoid Tumors

As a young mother, Hayli Acosta was diagnosed with desmoid tumors—which are not cancerous, but are often treated similarly. She underwent chemotherapy and cryoablation, a process that uses extreme cold to destroy tissue, at Huntsman Cancer Institute. Hayli's journey with this debilitating condition caused confusion with her insurance company along the way. Now, she is back to living a normal life.

On a day like any other in 2016, Hayli Acosta lifted her laundry basket. However, on this occasion, she felt a shooting pain.

I felt a lump.

“It was immediate in my arm pit area,” Hayli says. “I checked the other side and nothing. I thought I was just swollen and getting sick. I did not want to think about it. Two weeks later, the lump had doubled in size.”

Hayli knew this was something that could not be ignored anymore. After a couple of doctor’s visits, one physician suggested she get imaging at Huntsman Cancer Institute (HCI).

“I went to HCI that day and they wanted to do a biopsy right there. They thought it was stage I or stage II breast cancer.”

Despite fearing the worst after losing a younger sister to cancer, Hayli tried to focus on staying positive for her mother and young boys.

Hayli and her husband before starting chemotherapy

“When I got my test results back, they told me ‘Good news, it is not breast cancer. Bad news, it is a tumor.’ The doctors said I had to start chemotherapy immediately. I was out of it. It was crazy. I think I laughed in disbelief just to keep from crying.”

Desmoid tumors are not cancerous, but are often treated similarly through chemotherapy and radiation. They grow from connective tissue in the body that links bones, ligaments, and muscles together, and holds organs in place. Since connective tissue is found everywhere in the body, a desmoid tumor can occur anywhere.

“I had never heard of desmoid tumors before my diagnosis and quickly learned many doctors had not either. There is not a lot of literature out there. I am in a group with people ranging from 10 to 60 years old who have had desmoids in their intestines, stomach, esophagus, and other areas that make it difficult to remove with surgery. They are not responding to their chemo treatments and some have even passed away.”

After a year of chemotherapy and drug treatment, nothing seemed to be working for Hayli.

L to R: Start of chemotherapy; a few weeks into chemo; one month into chemo; couple months into chemo

It was just so frustrating.

“We hoped the tumors would stabilize or decrease in size, but they kept growing. That is when Dr. Cizman stepped in. He said to get off the medication and see if I responded to the next best bet, cryoablation.”

“Cryoablation usually comes after other treatments are exhausted,” says Ziga Cizman, MD, MPH, associate professor in Interventional Radiology at the University of Utah (U of U) and Huntsman Cancer Institute (HCI) provider. “You do systemic treatment, radiation, surgery, and then move on to this step. It comes into the process if the pain does not subside and depending on the location of the tumor.”

Cryoablation is a treatment to kill abnormal cells with extreme cold. The freezing and thawing process is repeated several times in three-to-five hour sessions.

“I have had three sessions so far,” Hayli adds. “The cryoablation freezes your nerves for two or three weeks so the swelling and pain are gone, but your nerves are asleep. Before treatment, my nerves were on fire with pain, so the relief is great.”

Hayli after round two of cryoablation

While Hayli was dealing with her serious health issue, she ran into another difficulty when it came to health insurance.

“The insurance company would not cover me. They said my tumor was not harmful since it was benign, but I was in pain. It is a tumor and it destroys nerves, tissue, muscles, and organs. I was not sleeping. I did not want to do anything. My physical and mental well-being were both at all-time lows. I just wanted to survive the day and go to bed.”

With the help of her health care team and after countless appeals, insurance finally covered her sessions.

“We had to explain to the insurance company that even though this was not a malignant tumor, it affected her greatly,” Cizman adds. “The insurance companies want everything to fit neatly into their criteria, but that is not always the case. It took a year for insurance to approve her care.”

Hayli with her twins; working at U of U Hospital during chemo treatments

A nurse herself for almost five years and a U of U medical worker for 12, Hayli said this entire process has made her feel more empathy for people suffering with pain.

“I can connect with them,” Hayli relates. “I say ‘I have had pain, I have been unable to sleep, I have suffered mentally’. It makes you appreciative of the blessings you have had, but also become more of an advocate. I know that without my doctors advocating for me, there’s no way I would be where I am now.”

It humbles you.

Now pain free and active again, Hayli feels like the person she was before her tumors. She can keep up with her four boys, whether it be running around the house, hiking, or bike riding.

Hayli, her husband, and four boys