A Letter Apologizing for My Pre-Breast Cancer Diagnosis Thinking

To Those Who Were Diagnosed with Breast Cancer Prior to May 2014,

I, Rebecca S., need to apologize to you. I am incredibly sorry. I was naïve. I was young. I was ignorant. I was pink-washed by our “survivor” culture mentality.

As a teenage leukemia graduate (I’m using the word graduate and not survivor intentionally because new research says my own breast cancer may have been a treatment result from my previous cancer, so calling myself a leukemia survivor seems fraudulent), I should have known better. I was 32 years old and never had a close relationship with anybody who had breast cancer before. I never could have possibly dreamt in my worst possible nightmares that just six days before my 33rd birthday, I would be the first person in my world to receive this diagnosis and join your ranks.

Every October, I watched the morning talk shows while getting ready for work. I flipped through the magazines while in line at the grocery store. I saw the photoshopped images, promotional materials and advertisements promoting walks and runs for “the cure” while going about my day. I listened to celebrities share stories about their own experiences with breast cancer, chemotherapy, radiation and surgery.

I tuned them all out. I ignored all of you, and I am sorry.

All I saw were pretty women who looked healthy, talking positively about their “journeys.” It seemed like breast cancer was no big deal — an easily beatable obstacle that could be overcome with the right amount of perkiness.

I remember being in my bedroom in October 2013 thinking to myself, “What is the deal with these women? They all seem fine. Why can’t they just move on? I survived my own cancer diagnosis 19 years earlier and I didn’t feel the need to be a featured story in a major media outlet.”

Little did I know, while I was thinking those horrific thoughts, breast cancer was brewing and growing in my own body (specifically my left breast, lymph nodes, lungs and sternum), and my bubble was about to be burst wide open.

In late April 2014, while putting on a bra, I felt a lump on my left breast where the underwire hit. It was almost as if it popped up overnight. One day it was not there, and the next day boom… a palpable, unmovable mass. Based on my prior cancer experience, I knew enough to not wait and see but to get it looked at right away.

I am very grateful that I followed my instincts. Within a matter of weeks, I met with my gynecologist, who felt it and sent me for a mammogram a few days later. I ended up having a biopsy the same day.

After a long weekend of waiting for the confirmation (that I knew was coming), I got it at work on Monday morning on May 5, 2014. The call that verified my suspicions that the biopsy was going to be malignant for breast cancer came through while I was planning a Mexican food lunch outing with co-workers in honor of Cinco de Mayo.

My first thought was, “OK, I had chemo for two years from ages 14-16 and went into remission right away. Clearly my body responds well to chemotherapy drugs. If I did it then and for that long, I can certainly gear up and do it again. No problem. I’ll be fine! Plus, my breasts are saggy. Maybe, they can even throw in a lift and make them perky!”

I went into straight business mode and scheduled my first appointment to meet my new oncologist — who would literally become my life-saver and best friend. After our initial consult she staged me as 3B, but decided (thankfully) to throw in a “just in case” PET scan to be sure.

Needless to say, we were all thrown off guard to find out I was in the 10 percent of patients who were metastatic stage 4 de novo and even among the fewer percentage of breast cancer patients who were diagnosed younger than 35 years of age.

I have actually tried to figure out the odds of me having the exact diagnosis I have, and it is beyond impossible. I am a cancer overachiever, especially since I have both triple positive and triple negative cancers at the same time. And now, while I have been stable from the neck down for over a year, I have been dealing with brain metastasis for a year-and-a-half.

I think the odds of my unusual breast cancer diagnosis are less than 0.05 percent. I am an anomaly. If something is against all known statistics, research, patient experiences and facts, I am bound to be in the low percentage of people who will break the bell curve and stump the doctors. My oncologist and I jokingly call it “The RScheinkman Syndrome.”

What can I say — l’ve always liked to keep people on their toes!

Three years have now passed since I have been initiated into the breast cancer community and was welcomed with open, comforting arms from men and women from all over the world. I am taking this opportunity to thank each and every one of you. I am also unburdening myself of the guilt I have retained before I truly understood the impact and effect any stage of breast cancer diagnosis has.

I know now a mastectomy does not equal a free breast job or lift. That walks or runs for “the cure” do not always equal money raised for research. And that even completing treatment for breast cancer does not mean you will ever really be done and “over it.” It all too frequently comes back with a vengeance.

I get why people want to be featured in the media (in fact, I personally have and continue to do, as well) to share their stories and experiences. It is to educate people — like pre-breast cancer me — to get them to understand, wake up, listen and pay attention.

That is why, in part, I feel so passionately about speaking candidly about my life living with metastatic breast cancer. It’s why I’m furthering education, understanding, advocacy and the need for breast cancer research, especially amongst my peers.

I want to attempt to speak on behalf of those of us facing this cancer, as a way to relieve my own personal lingering guilt. I am one of the few people in my circle who has been personally impacted by this disease. It is important for my friends and their friends, and others in their 20s and 30s, to see the truth behind the pink and not to be as blinded as I was.

We are told only women 40 and older need mammograms and that breast cancer is not something we need to worry about yet. But just from looking around our collective cancer center waiting rooms, that isn’t true. I am among way too many of the younger faces in the crowd.

Once again, I am sorry for my pre-diagnosis thinking. I hope my tireless fundraising, advocacy work, writing and contributions to the metastatic breast cancer community more than makes it up to all of you.

Thank you,
Rebecca

This post was originally published on The Underbelly.

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