At age 24, Philomath woman in fight against Stage 4 cancer

A 20-year-old college student in the midst of her junior year at the University of Oregon, Katarina Dominski had her sights set on qualifying for the Boston Marathon. A self-described gym rat, she had a passion for running but also pushed herself physically through swimming and cycling.

A little more than four years later and now living in a house on College Street in Philomath, Raina — a preferred, shortened version of her first name — is fighting for her life.

Raina has Stage 4 terminal cancer.

Her story is a complicated one involving an extremely rare form of cancer called synovial sarcoma. For two years, the pain emanating from the back of her left upper leg had been misdiagnosed as a calcification supposedly from a previous injury, an intramuscular hematoma, a hernia and a cyst.

When she did learn that she had cancer, Raina met the disease head-on with an aggressive treatment plan and was told at one point that she had a 90% chance of beating it. A few months later, she was told it was terminal.

“I cried in the doctor’s office because it was such a rush of emotion to go from being told that there’s a good chance that you’re cured … to two months later being told that ‘you’re terminal and there’s really no options for you,’” she said.

So why does Raina, who is now 24, want to go public with her story? Some might shy away from sharing such personal experiences but she sees an opportunity to urge people to always advocate for themselves in medical-related situations.

“But also more importantly, sharing awareness about this disease,” she said. “It’s not a common cancer and not very well known. I had no idea what sarcomas were when I was diagnosed.”

Synovial sarcoma is a rare soft-tissue cancerous tumor that occurs in one to three people per million each year. It typically starts in the arms or legs and tends to occur in teens and young adults.

“When all this happened, we always joked that I was like a shooting star because my birthday is once every four years on Feb. 29 and then I have a rare blood type, AB positive,” she said. “And now I have this rare cancer that only happens in one to three people in every million.”

‘Felt like my leg was on fire’

Raina lived in eight different states during childhood — born in North Carolina, the longest stretch in New York and out to Oregon by age 18. For college, she studied business and anthropology at the University of Oregon and earned a degree in 2022.

She had done all of the healthy things that people threw at her growing up — she ate the right foods, she exercised, she didn’t party in college, she drank alcohol maybe once every few months. In other words, she lived the type of lifestyle that should serve a person well in the coming decades of life.

“My dream was to run a marathon … I’ve always wanted to run in the Boston Marathon,” Raina said. “That’s what I was training for at the time.”

“At the time” is a reference to when the pain first surfaced. Raina was a month shy of her 21st birthday and in her junior year at UO.

“The pain started in January 2021 and the tumor was right here,” she said, pointing to an area along the back of her left thigh. “I was running on the treadmill at like 7 p.m. … I stopped running, I ate dinner, watched TV and went to bed.”

At around midnight, she woke up with intense pain that ran from halfway down her back to her ankle.

“It felt like my leg was on fire,” she said. “And there’s nothing you can do except take opioids, as I later found out, to take care of the pain. That night, I tried icing it, I tried elevating it with pillows, I tried taking Aleve, ibuprofen, Tylenol, nothing worked.”

She eventually passed out from fatigue.

“The next morning, the pain was completely gone like nothing had ever happened,” she said. “It was weird because I was fine. … There was no way to even pinpoint where it was coming from.”

The episode represented the beginning of a two-year ordeal to eventually be diagnosed with synovial sarcoma.

Pain goes away for 6 months

Although the pain was gone, Raina called the university’s health center. After answering a doctor’s questions and sharing what had happened, she was told there was no need for her to come in since the pain had gone away.

“It didn’t hurt for six more months,” she said. “At the time, I continued to go to the gym, I continued running on the track, continued training, continued swimming and I took up biking. I used to bike like 20 miles a day.”

In July 2021, it happened again.

“It was the same type of pain and it didn’t go away,” Raina said, mentioning that it continued for about 24 hours the second time around. “So I went into the ER and they took an MRI and the doctor came in and he’s like, ‘well, there’s a golf ball-sized calcification there and you might need surgery.’”

Raina said the doctor referred her to another facility but she never received a call. After a week had gone by, she called the center herself only to be told that they don’t take on those kinds of cases and suggested she go back to the emergency room to get a new referral from the doctor.

Back at the ER, there was a six-hour wait to see the doctor. She was again told that she might need surgery with the pain likely caused by aggravating a previous injury.

Raina wanted answers and struggled to understand the logic, especially since she had never had a previous injury, only going to doctors in the past for routine things like childhood immunizations.

“It was really weird in 2021. There were several months when there was no pain at all and then all of a sudden it would just be like searing pain,” she said. “It was like I couldn’t walk and when it hurt, I had to be in bed. … pretty much just laying there was painful.”

But the pain would leave and she’d go back to her normal life, including the physical activities that she loved so much.

When the third bout of pain hit her, she avoided the ER and went to the UO doctor. This time, the doctor suspected cancer and ordered an immediate MRI. The results were compared to the MRI that had been done in July at the emergency room.

“For whatever reason, maybe they caught the smaller side of the tumor in December, but it came back saying that the tumor had shrunk,” Raina said. “And you know, cancer doesn’t shrink so I have no idea what happened with the imaging. It remains a mystery to this day.”

Attempt at relief with Ace bandage

Raina received a phone call about the tumor shrinking but was still referred to a top oncology surgeon in Portland.

At a January 2022 appointment, she said she was told with 99% certainty that the issue was intramuscular hematoma and was advised to avoid a biopsy. A month or two later, she was back at the UO doctor and was reminded of the Portland surgeon’s stellar background and to have confidence in the diagnosis.

Raina said she was told that she must’ve done this to herself through an injury related to her physical activity.

“That’s kind of where the mantra started that I did this to myself,” she said. “It was my fault that it wasn’t getting any better. He told me to wrap it with an Ace bandage when it hurts.”

Then she added, “I still have that Ace bandage. I kept it as a souvenir from those days.”

The Ace bandage didn’t help. During her last term of college, she signed up for a Zumba class. The pain returned and the UO doctor told her that she needed to avoid physical activities.

“He said ‘stop … just take a rest.’ And that’s what my friends told me to do, that’s what my boyfriend told me to do, that’s what my mom told me to do,” she said. “Everybody was harping on me that whatever this is, it was my fault. So I lived with that sort of guilt for almost a year.”

After earning her degree, she moved to Philomath in August 2022 — her mom lived here, her boyfriend got a job in the area and she ended up working at Heartland Humane Society. The flare-ups became a regular weekly occurrence, waking Raina up in the middle of the night with no pain during the daytime hours. She later found out as part of a Facebook group of sarcoma patients that their pain would almost always start at night.

“It was like somebody was stabbing me with a knife all the way down and icing didn’t help, wrapping didn’t help, over-the-counter meds didn’t help,” she said. “So I went to urgent care in Corvallis and they ordered an ultrasound.”

Raina said the ultrasound results came back with a diagnosis of a hernia.

‘Health-care system has failed you’

“The urgent care doctor, she was a woman, she sat me down and said the health-care system has failed you,” Raina recalled. “She said, ‘in my heart of hearts, I don’t believe that this is a hernia.’ And it came back and it said that it’s less likely that it’s a hematoma.”

The doctor gave Raina her card.

“She said, ‘you call me if anybody pushes you around again and refuses to do a biopsy on you because you need to get to the bottom of this,’” Raina said. “She said, ‘you need to advocate for yourself and make sure you get that biopsy — she was an urgent care doctor so she couldn’t do anything more for me except refer me to the general surgeon. … But she was the one that made me realize that hey, this isn’t just a calcification. It’s not a hernia. It’s not a hematoma. It’s something else.”

Raina gave up the physical activities that she loved so much. No more biking, swimming, running or riding horses.

“Everything about me just stopped,” she said.

The next visit to a doctor included another order for an MRI. The doctor had doubts, she said, because he could not feel a lump and she again was told it was likely benign. The third MRI showed that it had grown by about a centimeter “which as far as malignant tumors go isn’t really that aggressive.”

The doctor again tried to feel for it, she said, and wasn’t convinced that a biopsy would be needed, Raina said. But she finally convinced the doctor to order one.

In January 2023, the procedure was done and Raina was told it was a neoplasm, “which is a fancy way of saying we don’t know what this is and it may or may not be a malignant tumor of some sort.”

Finds out she has cancer in online portal

Slides of the tumor were sent to Cleveland Clinic. A diagnosis of synovial sarcoma came back.

Raina said she found out that she had cancer at 10 p.m. one night while checking the online portal that provides access to her medical records.

“I got the email notification and maybe I shouldn’t have opened it but I did and it was synovial sarcoma,” she said.

Raina did an online search to find out more. It was only one day after her mom’s birthday so she kept the news to herself.

“I didn’t want to text her that her daughter had cancer,” she said. “I pretty much didn’t get any sleep that night.”

The next day, she went to her mom’s house and shared the news. They cried together.

“I had thought that my dog had cancer because he had a growth on his skin,” she added. “He actually had a biopsy the same week that I did. But he didn’t have cancer, I did. So I felt kind of a whole rush of emotions at that point because the general surgeon had told me that it was a cyst.”

Raina had been told four different things — a calcification from a previous injury, an intramuscular hematoma, a hernia and a cyst.

“I feel like nobody listened to me when I told them how much pain it was causing,” she said. “I feel like everybody knew that I was so active and kind of wrote me off as this young college girl that didn’t really understand.”

Still, the very rare type of cancer was obviously a challenge for the doctors.

Said Raina, “A lot of doctors go their whole careers without even hearing of it.”

After finding out about the cancer, a frustrating period followed with the medical institutions that were involved along with the insurance company and pursuing a second opinion. She estimated that she averaged 10 calls a day.

“That was the most frustrating time of my life because I knew that I had cancer and this thing in my leg was a tumor,” she said.

Beginning chemo and radiation treatments

It took until March 1, 2023, to secure a consultation with a surgeon in Portland — the same one that she had met with 14 months earlier. The plan was to begin radiation treatment to shrink the tumor and then perform surgery to remove it.

A few days later, Raina met with an oncologist to discuss beginning chemotherapy, which was optional. She was told that even without going through chemo, there was a 79% chance that she would be alive in 10 years. However, with chemo, that percentage would increase by 10% to 15%.

“So I ended up doing chemo … I decided to hit it the hardest that I could,” Raina said.

Three rounds of one of the more challenging types of chemo followed. And she also went through eight rounds of radiation treatment.

“My primary tumor was really responsive to the chemo and the radiation prior to surgery,” Raina said. “It shrunk from 5 centimeters to about 1 centimeter. That was really promising because not all tumors are that responsive.”

Raina’s first surgery occurred last year on June 8. The surgeon was unable to get all of the tumor.

“That was kind of sad for me because it’s always better to get the tumor out, all of it, on the first try because when you leave a little bit of sarcoma tissue in there, it can have the possibility of it like spraying your bloodstream with all of the cancer cells — and then it spreads that way.”

Over the next two weeks, a hematoma developed at the surgery site.

“They drain the hematoma … there was like a pump and everything, it was awful,” she said. “I carried it around for like three weeks. They made another incision lower down closer to my knee and had the drain come out and it was pumping all the time. It was really loud; it was hard to sleep with.”

The drainage procedure was necessary to avoid the development of a second hematoma after the second surgery, she said.

“They ended up getting all of the tumor out,” Raina said. “It was 90% dead, according to the necropsy that they did after my surgeries. So that was really positive because you want the tumor to die.”

Cancer cells spread to her lungs

Two more rounds of chemo followed after surgery to try to kill any remaining cancer cells.

Not long after following a test of her heart, a 2-centimeter blood clot was discovered wrapped around her port’s catheter. So, she went on a blood thinner and the chemo stopped.

“I was supposed to do six rounds of chemo but I ended up not doing that last round because my oncologist told me ‘I feel like the universe is telling us to stop and there’s a 90% chance you’re cured,’” Raina said. “So you can just go home and celebrate.”

That was in September.

“I was put in that wait-and-see mode,” Raina said. “You’re done with treatment and ‘now we’re going to do scans on you once every four months and see what happens.’”

However, after the treatment and before the beginning of a waiting period, a scan was done on the leg.

“It came back clean, nothing to worry about, like some scar tissue from the surgeries, but that was normal,” she said. “And then the CT scan of my lungs came back and it showed several lung nodules — all pretty tiny, all below 1 centimeter but there were a lot of them.”

Raina was told not to worry since the nodules were so small and there was a good chance that they were benign. Later on, her regular oncologist showed concern that metastasis had occurred but they were too tiny to biopsy.

In the moment, Raina found herself with no options.

“It was just really devastating … it was more wait-and-see but now I knew that there was probably maybe something wrong,” she said. “At the very beginning of treatment, I was told by my oncologist that once this type of cancer metastasizes to your lungs, once it gets a good hold of your lungs, it’s no longer curable. It’s treatable, but in other words, you’re terminal.”

More scans followed in November in Portland. In all, there were about 20 lung nodules and one that measured 1.1 centimeters.

Raina pushed for a course of action and was told about an oral chemo pill and a type of monthly infusion chemo. With the holidays coming up, Raina was advised to hold off starting a new treatment because medically, it would be fine to wait instead of ending up in the hospital over Christmas.

“I was like, ‘no way, I don’t want to wait,’” she said.

Cancer centers in Boston, Houston

Raina’s dad purchased insurance out of pocket for her and she went to the Dana-Farber Cancer Institute in Boston.

“I met with an oncologist there who really did an amazing job explaining everything to me,” Raina said.

The oncologist recommended a specific dosage of the oral chemo, called Votrient, and to forget the infusions. It’s among the medications that she’s currently taking and there are side effects that she has to work through.

“The oral chemo is what’s turning my hair white … like everything is white — my eyebrows, my eyelashes, my hair,” she said.

In January of this year, Raina went to the MD Anderson Cancer Center in Houston — a facility with a reputation as one of the top in the country. An oncologist there increased the Votrient dosage to the maximum allowed.

“She said there’s a less than 5% chance you can be cured,” Raina said. “She’s really great and she’s my main oncologist now.”

Raina has not been given any timeline for how much time she may have left.

“I haven’t really asked because I don’t really want to know,” she said.

After the Votrient’s effectiveness runs its course, Raina said the plan is for her to go back on a more tolerable form of chemo.

“The regimen that my oncologist at MD Anderson gave me gives me a better chance to live longer,” she said. “I mean, of course you always have to consider quality of life, which I will probably consider at some point down the line, but for right now, I want to see what we can do.”

Raina shared how her battle with cancer has changed her life.

“I definitely prioritize myself a lot more,” she said. “I just take life as it is day-by-day. I don’t make any plans.”

In March, Raina and her boyfriend went on a road trip. But no plans. They stopped when they wanted and could always just pop up the rooftop tent that her boyfriend had on the back of his truck.

“I go hiking when I want to and I walk the dog every day,” Raina said, referring to her Belgian malinois named Mia. “I hang out with my mom a lot more.”

Raina has naturally straight hair but it is now curly as an after-effect of the chemotherapy.

“After chemo, it comes back curly because your healthy hair cells are damaged,” she said. “I think it happens with about 80% of cancer patients — it’s just called chemo curls.”

She likes the look.

“When I was a kid, I always wanted curly hair,” she said. “ I don’t want to cut it because then it will be straight again and I’ve been enjoying my curls. So I think I’m just going to dye it because I’m getting really tired of the white hair. … maybe pink or purple or something.”

Trying to live ‘as long as I can’

Raina doesn’t know what lies ahead exactly.

“It’s hard for me when I think about how this affects my family, you know, or what are the chances that I’ll see my 30th birthday or even next year because this cancer is unpredictable,” Raina said. “It can be under control and stable and then the treatment stops working and the nodules just grow at an aggressive rate.”

Raina has a GoFundMe page to help with travel and medical expenses not covered by insurance. She goes to Houston every two months for scans and regular checkups — the next one is coming up in June.

Raina said she feels that MD Anderson gives her a fighting chance.

“Traveling to MD Anderson to seek treatment at the top cancer center in the country is my best chance at living as long as I can,” Raina said. “However, unfortunately, my insurance just does not cover that much out-of-state treatment and I have about $7,000 in medical bills thus far in just three visits to MD Anderson and the one visit I did with Dana-Farber in Boston.”