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Why I Kept My Cancer A Secret, And Why I Won't Anymore

Sally Deng

I've been keeping a secret. I've decided to tell it.

I have metastatic breast cancer, MBC, stage 4. That means the breast cancer has spread to my lungs, bones and brain. There is no cure. Eventually, it kills you.

Actually, I've had it for two years. Keeping it secret served me well. I didn't have to explain myself to friends and strangers while I was still in the hysterical stage. Because, faced with an incurable cancer diagnosis, I did what any normal person would do: I stopped sleeping. I stopped eating. I sobbed a lot. I was grieving for my own life.

But I had to tell someone, so I told 50 of my closest friends. Also, since I'm a correspondent for NPR, I told my three editors. They've kept my secret. That's not easy to do in a newsroom filled with gossips. I'm incredibly grateful. Meanwhile, I had a chance to get used to working in my new normal. Frankly, it was a lot like my old normal, only with more medical appointments.

By the way, I have no issue with people who want to keep their cancer diagnosis a secret to the end. If you have the misfortune to have cancer, you get to have it any way you want.

If you can. I've had a titanium rod implanted in my thigh to deal with a bone metastasis. That would not have been my choice. The weirdest thing has been recovery from brain radiation. It turns you into a bit of a zombie. But then you get better. Just really slowly. My fingers on my left hand are still numb. My balance has deserted me. I meander around like a drunken bug.

Here's why I'm sharing my secret

Ina Jaffe
Jennifer Cawley / NPR
Ina Jaffe

I've decided to tell my secret for two reasons. The first is that I realized that much of my initial despair was based on bad information. I was wrong about almost everything. So maybe my confession will shorten the Despair Phase for others.

The second reason is much more in my wheelhouse as a journalist: outrage. I'll get to that in a moment. But first, my mistakes.

I thought metastatic breast cancer was fairly rare. Nope. Up to 30% of women with early stage breast cancer progress to stage 4. I thought that you were more likely to get metastatic breast cancer if you'd been diagnosed with a more-advanced stage of breast cancer to begin with. Wrong again. It's not dependent on your stage at original diagnosis. I was stage 1B when I was first diagnosed in January 2012.

I thought it was my fault. Maybe I drank too much (I didn't). Or gained too much weight (I hadn't).

Those are among many factors that can influence whether you get breast cancer initially. But no one is sure what causes metastases. So again, wrong, wrong, wrong.

Unfortunately, I did have something mostly right. The five-year relative survival rate is about 1 in 4.

And it's worse for Black women. Due to the types of cancers that they get, African American women have the highest breast cancer mortality rate of any U.S. racial or ethnic group, at 26.8 per 100,000 annually.

All of these things were painful to realize because I'd been planning on becoming a really cool old lady. While covering aging for NPR, I'd met so many inspirational elders that I wanted to be one of them.

This diagnosis doesn't mean I won't be. There are outliers, as they're called. People who live 10 years or more with stage 4.Mark Burkard at the University of Wisconsin Carbone Cancer Center is studying them to see what they might have in common. So far, it's too early to draw conclusions.

Seven percent is no solution

Which brings us back to the primary reason for disclosing my secret: outrage. As I began to research metastatic breast cancer, I came across the stunning statistic that only 7% of funding for breast cancer research is devoted to metastatic disease. Did I mention that this is the kind that kills you?

This figure is from a multiyear study (2000 to 2013) from the Metastatic Breast Cancer Alliance. Shirley Mertz, the former president, says the alliance plans to repeat the study beginning this year. "There is anticipation that the percentage will have improved," says Mertz. "But we will not know by how much until the analysis is carefully completed."

So, at this point, you might be wondering how many people have metastatic breast cancer. We know how many people die of MBC. Approximately44,000 a year in the U.S. But we don't know for sure how many (mostly) women and (some) men are living with it now. A 2020 National Cancer Institute study estimates that 168,000 women in the U.S. are living with metastatic breast cancer.

Meanwhile, in case you were wondering, I feel fine. The only discomfort I have is the result of my treatments. I have no pain from the cancer itself. I know that's coming. I'm just not sure when.

In normal times, I would be taking all those bucket list trips. Obviously, these are not normal times. I've barely left my house except for walks around the neighborhood. Most people think of just writing this past year off and picking up again when everyone gets vaccinated, but that's not easily done when you have a shorter timeline. You know there's no way to ever make up for this year. Really, there's no way to make up for lost time for any year. Cancer patients and others with short timelines are just never allowed to forget that.

Or to stop wondering why only 7% of breast cancer research funding is dedicated to finding a cure for metastatic breast cancer.

Copyright 2021 NPR. To see more, visit https://www.npr.org.

Ina Jaffe is a veteran NPR correspondent covering the aging of America. Her stories on Morning Edition and All Things Considered have focused on older adults' involvement in politics and elections, dating and divorce, work and retirement, fashion and sports, as well as issues affecting long term care and end of life choices. In 2015, she was named one of the nation's top "Influencers in Aging" by PBS publication Next Avenue, which wrote "Jaffe has reinvented reporting on aging."