Why Self-Advocacy is Empowering
Being diagnosed with triple negative breast cancer at the age of 28 was not in my plan. Cancer always felt like someone else’s story; a horrible thing that other people went through, but one that would likely never touch me.
So when I found my lump in December of 2019, I felt fear and I felt confusion. I was showering on a Monday morning after a blissful weekend away on Vancouver Island, getting ready to start the work week. I had music playing, and as I went to run my hand over my breast to start my routine self breast exam, I felt it. A marble sized, distinctly hard lump on the outside of my right breast.
I was new to Vancouver having just moved here in April of 2019 and like most of my friends, I didn’t have a family doctor. Within an hour of finding the lump, I was at the urgent care clinic waiting for the doctor. She walked in, and seeing my panicked look, said something along the lines of, “Oh, are you scared? You have no reason to be scared! Don’t cry.”
She had never met me, knew nothing of my medical or family history, and had yet to physically examine me.
Once she felt it, she again told me I had nothing to worry about, “You’re too young, and it’s not like you have any family history of breast cancer.”
I spoke up, “I actually do. My maternal aunt had breast cancer 10 years ago.”
“Oh, well, in that case I guess I’ll send you for an ultrasound to ease your concerns.”
Walking home from my appointment, I felt embarrassed that I had made a big deal out of my lump. The doctor’s attitude made me feel as though I was being dramatic, that I was silly for worrying, and that I was taking up precious medical resources just because I needed to be reassured that my lump was nothing.
It wasn’t until I went back two months later, the lump having tripled in size, that she finally took me seriously. All of a sudden, it was something to worry about and she wished I had come in sooner. I quickly had an ultrasound a few days later showing likely malignancy, and when my doctor gave me those results she also made it clear a biopsy was essential.
After being rejected by one hospital who had stopped all diagnostic testing due to COVID-19, I finally got lucky and had an appointment at the local breast clinic for both a mammogram and biopsy. This started the long line of appointments that I would have to attend alone due to the pandemic. As I was getting up off the table following the procedure, the doctor who performed my biopsy told me that because of my age, she was 99% sure it was benign and that I shouldn’t worry too much. So when I got my diagnosis a week later I was scared, confused, and again, alone.
While triple negative breast cancer is aggressive, I was incredibly lucky that my cancer was still early stage. I was able to start treatment two weeks after diagnosis, and now, nine months later I have finished chemo, surgery, radiation, and am now on oral chemo as a preventative measure. I had a fantastic response to chemo, and my lymph nodes came back negative.
I am largely at peace with this chapter of my life, but I do wonder sometimes about what my experience would have been like if I had been taken seriously when I first found my lump. If that doctor had sent me for the appropriate tests right away, if she had had knowledge of triple negative breast cancer – that it is more common in young women. I think sometimes, if I had had a doctor with more knowledge, I might have had to do less treatment. I might have had time to freeze my eggs, and not be faced with the stark reality of potential infertility.
Unfortunately, my story is not at all unique. Women are rarely believed by their doctors when it comes to pain and symptoms they are experiencing. This is even more the case for BIPOC women. Black women have significantly worse outcomes with breast cancer than white women because our healthcare system does not believe them when they say something is wrong.
Since my diagnosis, I’ve had friends and strangers reach out to me with their own stories of being dismissed by their doctors. Some are my age, others are younger, many have had babies recently. The common thread is that they’ve all been told not to worry and to just monitor their various lumps.
With a pandemic raging, it’s easy to take that advice at face value. What I wish I had known when I first found my lump is that even in a pandemic, I am worthy of taking up space in our medical system. I am deserving of having an answer about my health. I am allowed to request more information, to see another doctor. That if I’m told no, there is always another avenue to try. Self-advocacy, for me, always used to feel self-indulgent. Now, it feels empowering and necessary.
Self-advocacy is also hard and is very much steeped in privilege. It requires access to information, money, transportation, community support, and the time and resources to step away from work or childcare to make time for yourself. It’s not enough to just tell women to advocate for themselves because that misses half the picture. It also requires changes in the education of primary care physicians. It requires a more patient-centric approach to healthcare. It requires education so people know what questions to ask, what’s available to them, and even things as simple as how the referral system works for specialists and diagnostics. There are encouraging signals that awareness of these issues is building, and I’m thankful for organizations that are doing the work to take real action.
My advice for anyone reading this who may be avoiding routine screening, or getting that new lump checked out, or sitting in fear about a new pain or twinge after cancer treatment, is to take the first step and pick up the phone. It may take a lot of energy, multiple calls, frustrating answers, but at the end of the day, you are worthy of getting the answers you need and you are worthy of taking up space. – Lily Rogers
Breast cancer doesn’t wait, even during a global pandemic. Neither should you. If you notice something contact your healthcare provider, get checked. Head here to find out more.
