My Personal Story & Takeaways in Honor of Breast Cancer Awareness Month
10 Essential Steps to Advocate for Breast Health
I’ll cut right to the chase: over the summer, I had a breast cancer scare that shook me to my core. I took the time to undergo the necessary tests, and to process everything before going public, so it’s only fitting that I’m now sharing my very personal experience as we wrap up Breast Cancer Awareness month.
I’ll start with the good news: the lump that was spotted is small and *likely* benign, so I’m walking on a cloud of relief.
The bad news probably comes as no surprise: all of us are operating in a broken healthcare system that’s in need of a healthy dose of disruption. We deserve better. Our children deserve better. One of the hardest lessons I learned in this process is that women often receive medical guidance that is not in our best interest, and the “golden standards” of preventive breast health (no family history of breast cancer and clear mammograms) can fill us with a false sense of security (read on to find out more about this).
On top of that, when women are faced with breast cancer scares, we often go through it quietly and alone in the initial phases. For far too long, women have been shamed into silence, only talking about breast cancer when a diagnosis is grim. It doesn’t need to be this way! Sharing is caring, right?!
In a broader sense, why do we tend to hold back from sharing the lessons we glean from life’s biggest challenges? I believe the people you’re itching to share your struggles with are strong enough to handle whatever you have to say, and they’re eager for the chance to be there for you.
In that spirit, I’m on a mission to spread awareness about what I learned from my experience, including the steps every woman can take to be a fierce advocate for her own breast health. As a related follow-up, I’m also over on Seacoast Moms with a list of Holistic Services to Support your Breast Health.
In the meantime, here’s my story, and everything I’m doing to proactively ensure I’m here for all my daughter’s lifetime moments, big and small.
Knowledge is power and transparency saves lives!
For anyone who’s not familiar with podcaster and activist, Amanda Doyle, I highly recommend listening to this podcast episode. In it, she shares intimate details of her recent breast cancer diagnosis, and the life-saving information she learned along the way.
Amanda’s difficult decision to go public and share her personal news on her massive platform is the single greatest defining moment that helped me realize I should ask for additional diagnostic imaging. After a long, drawn-out process, I was eventually told that the testing I fought for is the very thing that will likely save my life one day. But first I was told that I didn’t qualify for it. Then once I received the referral, I was told that my insurance wouldn’t pay for it.
Then later, I was told that I am, in fact, in the 10% of the female population with the greatest risk of developing breast cancer in my lifetime. Lastly, I was told that I have a very small chance that breast cancer will ever be life threatening to me because I fought for myself and now qualify for regular, ongoing diagnostic imaging to monitor my breast health. I wish the latter point was true for the older generation of women in my family, and for SO many women still today.
The combination of mammograms, MRIs and ultrasounds that I’ll now receive on a rotational 6-month schedule for the rest of my life is the key that will prevent my risk from turning terminal. Sadly, most women aren’t told they should even ask for this key.
My platform isn’t nearly as wide or far reaching as the award-winning, chart-topping podcast, We Can Do Hard Things, where Amanda Doyle shared the information that has helped save my life, but if sharing my experience and takeaways through this process helps save just ONE life, it’s well worth it—who knows, that life very well could be yours. I encourage each person reading this to share this vital information with all the amazing women in your lives. You never know whose life you could help save in the process.
Top 10 Tips to Advocate for your Preventive Breast Health:
Dig deep for family medical history
Look out for ridiculous diagnoses like “cancer of the lady parts” that were used for women up until far too recently. Until I started asking more questions this year, I had no idea that my great-grandmother went to the hospital for treatment of unspecified “women’s issues” and never made it home because the doctors didn’t catch her diagnosis soon enough. We actually still don’t know what her exact diagnosis was. One of the only other women I know on that side of my family also died quickly from aggressive breast cancer in her 50s. I have limited access to family medical history of the females in most of my extended family, but the 2 cases I do know of were enough to get my doctor’s attention when coupled with the risk factors due to my breast density (more on this next).
If you have a complete family medical history, and there’s no record of breast cancer, that’s great—but just because you don’t have a family history of breast cancer does not mean you are at a lower risk.“In fact, most women diagnosed with breast cancer do not have the cancer in their family.”
~Roni Caryn Rabin, The New York Times, reporting the American Cancer Society’s Breast Cancer Facts & FiguresGet your annual mammogram and find out your breast density
Get your first mammogram at age 40, and earlier if you know of increased risk factors like family history. At your first mammogram, find out what level of density your breasts are. Find out more about the 4 levels of breast density and why it matters:
Dense breast tissue: What it means to have dense breasts - Mayo Clinic
As the kids are saying, TLDR (too long didn’t read), so I’ll summarize:
Dense breasts make it difficult to detect cancer until it’s too late. On top of that, dense breasts also increase the risk of breast cancer. It’s no wonder women are often undiagnosed until later stages of cancer!
I’ve had an annual mammogram for the last 3 years since I turned 40, and they’ve all come back clear. This year, because of what Amanda shared, I took a closer look at the standard mammogram report. Only one line was highlighted: that everything appeared “normal”, and I should simply schedule my next mammogram in a year. But as I read further down, I saw that my breasts are classified as “extremely dense.” I’m sure this info was in the last 2 letters I received and because I didn’t know it was anything to be concerned about, I just followed their recommendation. I operated under the false assumption that the medical professionals would tell me if there was something more I should do for my preventive healthcare.Take the FREE online risk assessment:
Tyrer-Cuzick Risk Calculator for Breast Cancer Risk Assessment | MagView
This is particularly important to take if you’re in one of the two highest breast density categories. My personal calculate risk percentage that I learned from this test is what my PCP used to declare the additional imaging was medically necessary, and to push for genetic testing.Advocate for genetic testing
If you don’t have a complete family history available to you, start asking your doctor about the BRCA test. It’s the only way many women will ever know their genetic history as it relates to female-specific diseases such as breast and ovarian cancer. Expect lots of pushback on this if you don’t already have family history since:“…expert groups recommend that testing be focused on those who have a higher likelihood of carrying a harmful BRCA1 or BRCA2variant, such as those who have a family history of certain cancers” (BRCA Gene Mutations: Cancer Risk and Genetic Testing Fact Sheet).
HELLOOOOOO, “expert groups”! We don’t know what we don’t know. So help us know!
Despite my breast density plus the 2 known family cases, and a peer-to-peer call from my PCP to my insurance explaining why it’s medically necessary, my insurance company decided I don’t qualify for tests like the BRCA to determine my specific genetic risk factors.
Apparently if generations before us weren’t given accurate medical information, our own ability to receive access to proper preventive treatment often comes down to our ability to pay out of pocket. Hmmmm, this doesn’t seem right! This test should not be accessible only to those who can afford to pay out of pocket, or those who are privileged enough to have a full and accurate family history. We all deserve to know about our predisposed risk factors.
I’m not stopping at my first “no” and I hope you won’t either if you encounter the same kind of pushback I’m getting. My PCP gave me a referral to a genetic counselor, so my next step is to schedule an appointment, and then hopefully go back to my insurance for another attempt to approve the additional test.Request additional imaging like an MRI and/or ultrasound
If you have extremely dense breasts like me, ask your PCP to approve an MRI. The system needs to change so that any woman like me in the top 10% risk category would automatically qualify for an MRI. Otherwise, if I had waited for my annual mammogram to someday detect an area of concern, it likely would have progressed to the point that it would require a much more aggressive treatment plan. I can’t say this enough: the mammogram is important, but it isn’t enough if you have dense breasts!
The lump in my breast was very visible in the MRI, which qualified me for an expedited follow-up ultrasound to get a closer look at it. It wasn’t easy to get approved for this additional imaging, but it was well worth the effort.
In fact, both age and race play a huge role in the likelihood of women getting a lifesaving early diagnosis, and the trick is knowing when to push for advanced diagnostic imaging:
a. The impact on younger women:
The research has shown an increase of breast cancer in women under 50, yet it takes longer for younger women to get approved for the necessary tests.
“Getting a diagnosis often takes longer in younger women, leading to delays in treatment and more advanced disease.” (Roni Caryn Rabin, The New York Times)
b. The impact on women of color:
Like most cultural barriers, women of color unfortunately need to fight harder for themselves than any other demographic due to the irrefutable racial disparities in breast health and survival rates. Rebecca L. Siegel, epidemiologist at the American Cancer Society and senior author of the report shares:“Breast cancer continues to be the leading cause of cancer deaths among Black women, who have a 38 percent higher death rate than white women…The bottom line is, we need to improve access to high-quality screening and high-quality treatment for all women of color, especially to Black and Native American women…” (Roni Caryn Rabin, The New York Times)
Share your story with others!
Don’t be afraid to talk about what you’re going through. There’s absolutely nothing to be ashamed of. I told my closest friends what was going on, praying that I’d go back to them and say it’s nothing to worry about. If I’m losing sleep worrying about something, it helps to know I have a supportive network sending me loving vibes.
I also told a couple of my church leaders since I had to miss a few committee meetings due to my last minute medical appointments. Plus, I asked for prayers; I knew the prayers from my church community wouldn’t change the outcome of anything, but they would help with my own ability to peacefully process whatever news I might receive.
What I didn’t know at the time was that one of the women I shared this news with happens to be a radiation technologist who administers breast MRIs! She called me immediately and the helpful medical information she shared, coupled with her own personal experience, assuaged my anxiety and helped me understand more about what was going on while I waited for answers. I wouldn’t have had this support system if I’d stayed quiet about what I was going through.
We’ve been silenced and siloed for far too long, and the only way to disrupt this broken healthcare system is to band together and advocate for ourselves—fiercely and unabashedly. You don’t need to protect anyone from worrying “prematurely.” If you’re worried about something, let others into your world. Let them lift you up when you need it; we often need it most in those messy in-between times when we have no answers.
In the empty void of anxiously waiting lies the chance for our loved ones to buoy us up. Consider it an act of kindness to give the people who care about you the chance to show up for you. You don’t need to wait for some gut-wrenching diagnosis to have permission to ask for support.Prioritize your friendships—the research shows this could be your greatest health predictor!
Related to step #6, make time (note the keyword here is “make” because we’ll never “find” extra time in our busy lives) to continue cultivating your closest friendships.
According to the Nurses’ Health Study (the largest and longest-running study on health and wellness conducted by Harvard Medical School), it’s perhaps the most effective (and enjoyable!) ways to stay healthy!“Women who maintain friendships are healthier over their lifetime and less likely to die of specific diseases like cancer.”
~Former CNN Anchor, Brooke Baldwin (read more about the power of friendship in her book Huddle: How Women Unlock Their Collective Power.Explore holistic health options
Take control over your preventive health and wellness. In addition to the diagnostic imaging for early detection, there’s so much more you can do to decrease your risk. For more on this, my follow-up article on Seacoast Moms covers a variety of holistic services and resources ranging from nutrition, diagnostic lab testing, acupuncture, aromatherapy, reiki, genetic counseling, and more. Explore the options wherever you’re located and don’t listen to anyone who tries to discredit holistic health as “woo-woo.”
The aforementioned longitudinal health and wellness study shows evidence that women who exercise regularly, eat more fruits and vegetables, decrease consumption of processed foods and alcohol, and avoid smoking are at a lower risk of breast cancer, particularly the aggressive types. Read more here, as well as these additional resources:
Breast Cancer Research in the Nurses’ Health Studies: Exposures Across the Life Course | AJPH | Vol. 106 Issue 9 (aphapublications.org)Vote, vote, vote!
Vote for the people and policies with tangible plans to preserve insurance coverage for people with preexisting conditions. Vote for the politicians who care about protecting and advocating for women’s preventive health. Be a critical thinker, a fact-checker, and decide for yourself who will get your votes at the ballot box.Above all else, trust yourself!
One of my best friends happened to be with me in the car when I got the call from my PCP informing me that the MRI detected a lump. As I sat there processing the news, she said to me in awe:
“You knew. Without knowing, you already knew.”
She was right. The reason I pushed so hard for additional imaging is that deep inside, I knew they’d find something (thanks for being there for me, Meaghan; it’s no coincidence you were by my side when I got that call).
So often our fears are brushed aside by the medical professionals who are stretched too thin to spend the kind of time it takes to really listen to their patients. The most important step you can take for your overall health and wellbeing is to listen to what your body is telling you, trust your intuition, and never, ever back down from asking for what you need. Get second opinions, and make a big fuss—you deserve it.
As my favorite poet, Mary Oliver reminds us, sometimes the best thing we can do for ourselves is to ignore the voices (even the expert medical ones—and even MINE) telling us what to do/not do, and instead, to trust the voice calling to us from within:
I may not be a medical professional, but I vow to do whatever I can to prioritize preventive care for myself and everyone out there. Testing should be accessible to everyone with a high risk, not just those who can afford it.
So here's to being an informed rule-breaker, to understanding our risk factors, to not always following the generic recommendations, and to proactively pursuing every option available to keep you healthy and ALIVE!
Sharing your story like this will help so many <3