Why I kept my cancer secret, and why I no longer keep it secret

I have kept a secret. I decided to say that.

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

In fact, I have it for two years. Keeping it secret has helped me a lot. While still in the hysterical stage, I didn’t have to explain myself to my friends and strangers. Because in the face of a diagnosis of incurable cancer, I did what the average person would do. I stopped sleeping. I stopped eating. I sobbed a lot. I was sad about my life.

But I had to talk to someone, so I talked to 50 of my close friends. Also, I’m an NPR correspondent, so I talked to three editors. They have kept my secret. It’s not easy to do in a newsroom full of gossip. I appreciate it very much. During that time, I had the opportunity to get used to my new regular job. Frankly, it looked a lot like my old ordinary person, but had more medical appointments.

By the way, there is no problem for those who want to keep the cancer diagnosis secret until the end. If you have the misfortune of having cancer, you will have it the way you want.

if you can. Titanium rods are embedded in the thighs to combat bone metastases. That wouldn’t have been my choice. The strangest thing is the recovery from radiation in the brain. It turns you into a little zombie. But then you get better. Really slowly. The fingers of the left hand are still numb. My balance has abandoned me. I’m wandering like a drunken bug.

This is why I share my secret

I decided to tell my secret for two reasons. First, I realized that much of my first despair was based on bad information. I was wrong about almost everything. So my confession may shorten the despair phase of others.

The second reason is in my wheelhouse as a journalist. It’s anger. I’ll talk about that soon. But first, my mistake.

I thought metastatic breast cancer was quite rare. No. Up to 30% The proportion of women in the early stages of breast cancer progresses to four stages. If you are diagnosed with more advanced breast cancer in the first place, you are more likely to get metastatic breast cancer. Make a mistake again. It is the first diagnosis and does not depend on your stage. When I was first diagnosed in January 2012, I was in Stage 1B.

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

They are Among many factors It can affect whether you get breast cancer first. But no one knows what causes metastasis. Again, wrong, wrong, wrong.

Unfortunately, I had almost the right one.The· 5-year relative survival It’s about a quarter.

And that’s worse for black women. Depending on the type of cancer that develops, African-American women have the highest breast cancer mortality rates of any racial or ethnic group in the United States. 26.8 per 100,000 Every year.

I was planning to be a really cool grandmother, so it was a pain to achieve all of this. While talking about NPR aging, I met so many inspirational elders and wanted to be one of them.

This diagnosis does not mean that I will not. There are outliers as they are called. A person who lives in stage 4 for more than 10 years. Mark Bar Card The Carbone Cancer Center at the University of Wisconsin is studying them to see what they might have in common. So far, it’s too early to come to a conclusion.

7% is not a solution

It brings us back to the main reason for disclosing my secret: anger. When I started studying metastatic breast cancer, I came across some amazing statistics: Only 7% of the funds Breast cancer research is dedicated to metastatic disease. Did I say this is the kind that kills you?

This figure comes from a multi-year study (2000-2013) by the Metastatic Breast Cancer Alliance. Former president Shirley Meltz said the alliance will repeat the investigation starting this year. “We expect the percentage to improve,” says Mertz. “But I don’t know how much until the analysis is carefully completed.”

Therefore, at this point, you may be wondering how many people have metastatic breast cancer. We know how many people will die from MBC.about 44,000 a year In the United States, however, it is currently unknown how many (most) women and (some) men live together. In the 2020 National Cancer Institute study, 168,000 women in the United States I live with metastatic breast cancer.

Meanwhile, those who are interested are fine. The only discomfort I have is the result of my treatment. There is no pain in the cancer itself. I know it will come. I’m not sure when.

Usually I make all those bucket list trips. Obviously, these are not normal times. I rarely left home except for a walk in the neighborhood. Most people are thinking of taking a break this year and re-vaccination when everyone is vaccinated, but it’s not easy if the timeline is short. You know there is no way to make up for this year. Really, there is no way to make up for the lost time of any year. Cancer patients and others with short timelines can never forget it.

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

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