Woman who ‘received’ an ’36 month of expiration’ cancer diagnosis 14 years ago is now focusing on plans for the future

Almost 14 years ago, Stephanie Seban was confronted with a moving question: “Do you want life?”

When 32 was diagnosed a year earlier with stage four breast cancer and her newly appointed oncologist in a hospital in New York City presented her a “grim prognosis”.

Almost a year earlier, Seban, now 45, developed a “very abnormal and abstract” lump in the middle of her chest; Although initially diagnosed as 2B, after the operation to remove the clog, it was told that the cancer had spread and 22 lymph nodes were removed – more than half infected with cancer. A PET scan later determined that the cancer had spread to her bones and her diagnosis was changed to stage 4, er+ and her2+.

“You hear ‘cancer’ and you think it will just be a small part of your life,” Seban tells people about a recent phone call from her house in New York. “Not to say that someone who has had an earlier phase cancer goes back to ‘normal’ – but this is 14 years for me for me.”

She initially started the treatment near her mother in Atlanta, but after not seeing for a while, Seban decided to go to New York and see an oncologist in a highly recommended hospital.

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

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

From there she took a break of chemo and continued a HER2+-specific regime until the medicines seemed to “stop working”.

“I was a bit smooth sailing until I wasn’t,” she says. “At some point [the doctor] I just told myself that there was nothing left for me to do for me. I did not understand, such as: ‘What does this mean? Do I just have to roll over? ‘I have always been very stubborn and I am grateful for that – I was just like, well, there is no way to go in hell that I just go home and give up without trying. “

Frustrated by the lack of answers, she started looking at alternative therapies, she says: “If you are in the position to have phase four cancer and traditional medicine you fail, why should I not try it?”

She found a Chinese herbalist in Queens, New York who refers her to a doctor in another New York City Hospital that she now credits by saving her life. He advised Seban to be processed again because “sometimes cancer can change”, and even did the operation itself.

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“He cut me open there and biopered my breast, and a week later sent an e -mail and said:” I did the right formalities to contact your oncologist to let her know, but you are not Her2+ and this explains why you have not responded to these drugs, “she remembers him explains.

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

“I was incorrectly diagnosed for the first four and a half years to have stage four breast cancer and used all the wrong medicines,” she said. “The fact that I had taken the wrong medication for so long was a miracle in itself – I was very sick.”

As it turned out, Seban was actually Her2- and once she started an updated regime to treat the new diagnosis, “I see, I got better.”

After her first diagnosis in 2011, Seban left her career as a English teacher to become an advocate for others who live with the disease, especially young women who are confronted with a stage four diagnosis. In 2017 she and her old best friend Amanda Anik started their own clothing and jewelry line called Thrive Gang from a desire to “make cool, meaningful gifts that don’t give you a hiking board for cancer – as a cancer patient.”

She also started a blog that later became her experiences on social media, to give conversations, to attend conferences and even help them create Savage X Fenty’s Breast Cancer Awareness campaign for five years in a row.

“I really wanted to share my story, not only at a young age phase four breast cancer, but if you really are your own best lawyer,” she says. “Because if I wasn’t my own best lawyer, I would have lost my life when they told me that there was nothing left for me to do for me.”

But with her platform there is also a feeling of pressure and expectations to be the “North Star” of her followers – which became a challenge when she discovered that the cancer had spread to her liver and stomach two years ago.

“I almost lost my life in October November of last year,” she says. “I just got really sick to the point where I exhausted my stomach. I lost mobility, I ran with a stick, I got blood transfusions … I think it was the first time I saw my doctors scared and the people around me. “

During that time she took a step back from social media when she managed the attack of new symptoms – both because she felt so sick, and because she hesitated to share her reality with her followers.

“I feel that at least in the world of stage four breast cancer, many women look at me because I had to fight so many opportunities,” she explains. “It’s like:” What are you doing and how can I have this lifespan? ” I almost felt that I was afraid of sharing what happened to me because I didn’t want to abandon people. “

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

‘My friends were just:’ Are you joking? You have just overcome damn death. You should be proud to share that, and that it is still inspiring, “she says. “So it took me a second to realize that sharing my darkest times still inspires other people.”

In recent weeks Seban says: “The ship turned around and I am now going in a much better direction” after starting a new medication and treatment course. She is now ‘looking forward to’ a variety of plans that are coming up this year, including celebrating her father’s 80th birthday, on vacation with friends, starting a non-profit, continuing to organize retreats for other women who are confronted with cancer and enjoy time in the house she recently bought in Long Island, New York, New York.

“I feel that I would buy a house, showed my faith,” she says. “I believe I will be here to live in this beautiful house.”

“Being able to look out at these things gives me a goal,” she continues. “I am enthusiastic about my future to be honest. I would lie if I said that I don’t have those moments when the downfall and gloom come into effect and I have something like: “What if?” But I made it for almost 14 years. I say that in no way bragging; I clearly know the reality of this disease. But I got it that far and I plan to have a better life for me. “

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