A Rare Cancer That’s Killing Young Women (And No One Knows How to Cure)

The phone call came on October 11, 2019, a date now burned into my mind. “Hi Taryn, unfortunately, the biopsy showed you have a rare cancer.” How rare and how aggressive were unknown to me at the time. My tumor was only 2cm, but we would not know staging until after a radical hysterectomy. What followed was an onslaught of appointments with various oncologists — one for surgery, one for chemotherapy and one for radiation — and various tests. My PET, CT and MRI all showed only local disease. Everyone had high hopes. We had caught it early. My pap smear a year prior was normal. Everything would be okay.

A few days later they took my cervix, my uterus, one-third of my vagina, my ovaries, my fallopian tubes, and surrounding tissue. Buh-bye future children. I spent four days in the hospital with a catheter in my urethra and an epidural in my back. It hurt to cough, to eat, to sneeze and to go to the bathroom. But I was alive.

Full pathology came back a week after surgery. Not what we wanted. My cancer had spread to one of the 15 lymph nodes they had taken out. That 5mm of cancer shot me up to Stage 3C. I received a final diagnosis of high-grade small cell neuroendocrine mixed with adenoma-carcinoma of the cervix.

My odds of survival … 7%.

It’s a statistical fact that most women who have my cancer will die. Even at Stage 1 the odds of survival barely hit 30%. The odds of recurrence (i.e. when the cancer comes back within five years) sits at 80%. But some people do survive. As my oncologist said, “The cure rate is not zero.”

I think about that every day. The cure rate is not zero. How do I become a part of the 7%? The lucky few who dodge the bullet and live to see the rest of their lives. Is it my diet? My resilience? My will to live? My treatment? Or is it much more random? For instance, were those women always going to live because the DNA of their cancer simply behaved differently? Do they have molecular structures we’re currently unaware of? Am I in the genetic bucket of survivors or those who perished? I’m like Schrodinger's Cat, both alive and dead.

If you ask doctors, they don’t know the answers to any of these questions. In fact, what they do know about this cancer can be summed up in three sentences.

It’s rare. It’s aggressive. It’s likely to come back.

It turns out less than 200 women per year are diagnosed with small-cell neuroendocrine cancer of the cervix. Normally, NETs (neuroendocrine tumors) show up on the lungs or the GI tract. Bernie Sanders’ daughter-in-law just tragically died of neuroendocrine cancer (in general). So did Aretha Franklin and Steve Jobs (of the pancreas)*. They don’t know why small cell sometimes hits women in the cervix. Not only that, the women are usually young.

The median age for small cell neuroendocrine of the cervix is around 40 — plenty of women are in their 20s and 30s. They’re getting married and are worried about freezing their eggs before treatment. Their Facebook pages are full of #StayStrong hashtags, “Fight Like a Girl” memes and prayers. Age plays no role in prognosis. Treatment consists of surgery, followed by 5+ rounds of combo chemotherapy and radiation. Median survival time is around 22 months, despite aggressive treatments. I think about that every day too. 22 months. Pretty soon the hashtags turn to #RememberingTK and #RIP.

In other words, there is no known cure. No treatment that seems to actually work for people and there’s no research or money to save us. Since the cancer is rare, women with small-cell neuroendocrine had to form their own Facebook group, rely on grassroots advocacy, raise their own money and gain support from MD Anderson, a comprehensive cancer institute, in Texas which now hosts a tumor registry in hopes of creating clinical trials. Without those women taking efforts into their own hands (like so many women before them), we might not even know what we know now. For them, I am thankful.

For me, this diagnosis has been a rollercoaster of emotions. Some days I’m confident and other days I imagine friends speaking at my funeral or my husband marrying five years after my death. You know enough time to mourn, but enough time to move on and be happy. Like one of those sad romantic comedies where we learn the male lead lost his young wife to cancer. “Awww,” we say as we dismiss the young, invisible, “woman” who died. It’s the beginning of his love story and the traumatic end of hers. I think about my mom and everything she’s been through. I can’t die on her.

I do know one thing, I am a survivor by nature and hopefully an outlier. I hope that my body can carry me through six months of treatment and prevent further recurrence. I hope that by sheer force of will, a little luck, and one of the top cancer teams in the country (c’mon I still need science of course) that I will be one of the 7%. I see myself growing old with my husband, watching my 5-year-old niece graduate from college, adopting a child of my own one day, and finally moving to the South of France as we planned.

I can see it and I hope the universe can too.

UPDATE (2022): I’m still alive! I finished treatment in 2020 and have had several clear PET / CT scans since then. Oct will be 3 years cancer-free :)

👉I have a GoFundMe to help pay for my intensive cancer treatment (surgery, chemo and radiation), but no pressure. Anything is appreciated ❤️🙏. https://www.gofundme.com/f/help-taryn-beat-cancer

PS if you or a doctor you know have any knowledge or resources related to high-grade small-cell neuroendocrine cancer please let me know.

*There are major differences between high-grade and low-grade neuroendocrine cancer.