Woman Who Received a '36 Month Expiration Date' Cancer Diagnosis 14 Years Ago Now Focuses on Plans for the Future

Nearly 14 years ago Stephanie Seban was faced with a harrowing question: “Do you want to live?”

Then 32, Saban had been diagnosed a year prior with stage four breast cancer and her newly appointed oncologist at a New York City hospital presented her with a “grim prognosis."

Almost a year prior, Seban, now 45, developed a “very abnormal and abstract” lump in the center of her chest; though initially diagnosed as 2B, after surgery to remove the lump, she was told the cancer had spread and 22 lymph nodes were removed — more than half of them infected with cancer. A PET scan later determined that the cancer had metastasized to her bones and her diagnosis was changed to stage 4, ER+ and HER2+.

“You hear ‘cancer' and you think it's going to be just, maybe, a small part of your life,” Seban tells PEOPLE over a recent phone call from her home in New York. “Not to say that anyone who's had an earlier stage cancer, their life goes back to ‘normal' — but this has been front and center for me for 14 years.”

She initially started treatment near her mom in Atlanta, but after some time not seeing results, Seban decided to go to New York and see an oncologist at a highly recommended hospital.

The doctor told her that just "one in five people" with her diagnosis “lived to see five years” and gave her what Seban describes as a “36 month expiration date.”

“I felt like my back was against the wall, so I did the chemo,” she remembers. “And on my next scan it showed that the cancer regressed.”

From there, she took a break from chemo, continuing a HER2+-specific regimen until the drugs seemed to "stop working."

“I was kind of just smooth sailing until I wasn't,” she says. “At one point [the doctor] just told me that there was nothing left that she could do for me. I didn't understand, like, 'What does this mean? Am I supposed to just roll over?’ I've always been very stubborn and I'm grateful for that — I was just like, Well, there's no way in hell I'm just going to go home and give up without trying.”

Frustrated by the lack of answers, she began looking into alternative therapies, she says: "When you're in the position of having stage four cancer and traditional medicine is failing you, why wouldn't I try?”

She found a Chinese herbalist in Queens, New York who referred her to a doctor at another New York City hospital who she now credits with saving her life. He recommended Seban get re-biopisied because “sometimes cancer can change," and even did the surgery himself.

Related: Breast Cancer Awareness: Empowering Stories and All the Facts

"He cut me open right there and biopsied my breast, and emailed me a week later and said, ‘I've done the proper formalities of contacting your oncologist to let her know, but you're not HER2+ and this explains why you haven't been responding to these drugs,’ she remembers him explaining.

It was then discovered that her pathology had been misread from the start.

“I was misdiagnosed for the first four and a half years of having stage four breast cancer and was taking all of the wrong drugs,” she said. “The fact that I had made it this long on the wrong drugs was a miracle in and of itself — I was very sick."

As it turned out, Seban was actually HER2- and once she started an updated regimen to treat the new diagnosis, “lo and behold, I got better.”

Following her initial diagnosis in 2011, Seban left her career as an English teacher to become an advocate for others living with the disease, especially young women facing a stage four diagnosis. In 2017, she and her longtime best friend Amanda Anik started their own clothing and jewelry line called Thrive Gang out of a desire to make “cool, meaningful gifts that don't make you feel like a walking billboard for cancer — like a cancer patient."

She also started a blog that later turned into sharing her experiences on social media, giving talks, attending conferences and even helping to create Savage x Fenty’s breast cancer awareness campaign for five years in a row.

“I really wanted to share my story, not only having stage four breast cancer at a young age, but of truly being your own best advocate,” she says. “Because if I weren't my own best advocate, I would've lost my life when they told me there was nothing left that they could do for me.”

But with her platform also comes a feeling of pressure and expectations to be her followers’ “north star" — which became challenging when she found out that the cancer had spread to her liver and stomach two years ago.

“I almost lost my life in October, November of this past year,” she says. “I just got really sick to the point where I was getting my stomach drained. I lost mobility, I was walking with a cane, I was getting blood transfusions...I think it was the first time that I saw my physicians scared, and the people around me.”

During that time she took a step back from social media as she managed the onslaught of new symptoms — both because she felt so ill, and because she was hesitant to share her reality with her followers.

“I do feel like at least in the world of stage four breast cancer, that a lot of women look up to me because I had to fight so many odds,” she explains. “It's like, ‘What are you doing and how can I also have this longevity?’ I almost felt like I was afraid to share what had happened to me because I didn't want to let people down.”

She later realized that it was just as important to share the bad days as the good ones.

“My friends were just like, ‘Are you kidding me? You just overcame damn near death. You should be proud to share that, and that it's still inspiring,' " she says. "So, it took me a second to realize that even sharing my darkest times still inspires other people."

In recent weeks, Seban says “the ship turned and I'm now headed in a much better direction” after starting a new course of medication and treatment. She’s now “looking forward to” a variety of plans coming up this year including celebrating her father’s 80th birthday, vacationing with friends, starting a non-profit, continuing to host retreats for other women facing cancer and enjoying time in the home she recently purchased in Long Island, New York — a "crucial" part of her well-being.

“I feel like me buying a home was showing my faith,” she says. “I believe I'm going to be here to live in this beautiful home.”

“Being able to look forward to these things gives me purpose,” she continues. “I'm excited about my future, to be honest. I'd be lying if I said I don't have those moments where the doom and gloom kicks in and I'm like, ‘What if?’ But I've made it almost 14 years. I don't say that bragging by any means; I obviously know the realities of this disease. But I've made it this far, and I plan on having more beautiful life ahead of me.”

Read the original article on People