“Star Trek ”Actress Kitty Swink Had a 4% Survival Rate After Pancreatic Cancer — It's Been 20 Years (Exclusive)

"My job now is to give others hope," the actress and activist said

In 2004, Star Trek actress Kitty Swink noticed that she was losing a lot of weight.

"I'm a naturally skinny person, so I didn't think much of it," she tells PEOPLE. "I also had back pain all the time, but I figured I was just stressed out."

Swink, who mostly does stage performances and is married to Star Trek: Deep Space Nine actor Armin Shimerman, had battled breast cancer when she was 38, so at Shimerman's insistence, she went to the doctor for some bloodwork.

The day following her appointment, she says her urine had turned brown, and she got an urgent call from the doctor saying her kidneys and liver were shutting down.

"By the time I got to the emergency room, I was turning yellow with jaundice," she says. A CT scan and a biopsy followed, and then the shocking news: at 49, she had pancreatic cancer.

Related: Maria Menounos Reveals She Survived Pancreatic Cancer — with a Baby on the Way (Exclusive)

"Seventeen days later, I came out of Cedars-Sinai with half my stomach, half my pancreas, my gallbladder gone, two feet of my intestines removed out, 28 lymph nodes removed and a 4% chance of surviving five years."

The prognosis was bleak, but Swink says she still felt hopeful. "I looked at my husband and said, 'I'm going to live.' I don't know why I thought I was going to live, but I thought, 'I have things to do.' "

Now, 20 years later, Swink remains pancreatic cancer-free, and is looking forward to turning 70 next year. She's also embraced her new mission, which is to raise awareness and funds for PanCan.org.

"On April 27th, we have our annual PurpleStride Walk," she says. "It's our biggest fundraiser. Trek Against Pancreatic Cancer is my team and I do it every year."

Also on her team are Star Trek actors Jonathan Frakes, who lost his brother to the disease 20 years ago, and John Billingsley, who lost his mother to pancreatic cancer.

Swink says the organization isn't just about fundraising for research. It's also educating the public about pancreatic cancer, which has long been considered one of the most difficult cancers to detect — and one of the most deadly.

"I know things have gotten better because when I was diagnosed, I had a 4% chance. Ten years ago, it was only a 6% chance of making it five years, and now it's 13. It's gone up a percent every year, which is a lot, but not clearly enough," Swink says.

"One of the things we're doing is trying to teach doctors what to look for," she says. "And one of the great things you can do if you're worried or have been diagnosed is you can call PanCan patient services and they can help you find a physician who actually knows what to look for."

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Related: FDA Approves New Treatment for Metastatic Pancreatic Cancer

Swink also wants individuals to be aware of possible symptoms.

"If people have this in their family, we have to have them be aware," she says. "We also have a campaign to help people understand that if you become diabetic in your 50s for no reason at all, you're thirsty all the time, that could be a factor. Do you have lower back pain? Are you losing weight inexplicably?"

She adds that part of her role as survivor is to talk to other patients every single day.

"People just give other people my phone number and I always take the call," she says. "Here's the things I tell them. 'Call PanCan right away, so you can know you're with the right doctor.' They're also really helpful because there's now targeted treatments and a lot of trials. It's not just a death sentence."

Swink knows she's lucky that she's made it this far past her initial diagnosis.

"I tried to live by the mantra that 'I'm going to live every day that I'm alive.' So I did," she says.

"I went back to the gym. I walked my dogs every day. I went to the theater. As long as my white blood cell count would allow it, I would do it. I think it makes you want to fight to be alive when you're engaged in the world."

She adds, "Here I am, 20 years later. I know that I am so, so lucky."

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