What seven months of breast cancer taught me about screening, risk and advocating for myself, and what I want you to do with what I’ve learned.
Here we are in October. Breast Cancer Awareness Month. Needless to say, this one hits different.
(For anyone who missed it, I was diagnosed with breast cancer in March. You can catch up on my story here.)
There are a lot of things I’ve thought about differently since getting breast cancer. But one of the things I keep coming back to is how much I didn’t know until I needed to know it.
About breast cancer. About my own risk. About screening and access to care. About how incredibly hard it must be to navigate a diagnosis without the resources and support I’ve been lucky enough to have. About how research is funded. And honestly, about my health in general.
So this month, I’ve found myself thinking about what I can do with everything I’ve learned, and how I make it useful instead of just adding more pink to everyone’s feed.
After some reflection, I realized I want to share the things I wish I had known, and more importantly, what you can actually do with that information.
Because awareness is important. But we all know breast cancer exists.
Awareness alone isn’t enough. It’s what we do with it that matters.
I’m not a doctor. I’m just someone who has learned an enormous amount in seven months, still finds plenty of it confusing, and now knows a whole lot more
about the questions I wish I’d been asking all along.
I can’t go back and give the pre-cancer version of myself this list.
So I’m giving it to you.
I hope you’ll take it seriously.
Breast cancer isn’t something only older women need to think about.
One of the things that surprised me most after sharing my story was how many women 40 and older reached out to say they still hadn’t had their first mammogram.
I think part of the problem is that we still tend to think of breast cancer as something that happens when you’re older.
And statistically, it mostly does. Age remains one of the biggest risk factors for breast cancer.
But breast cancer diagnoses among women under 45 increased about 11% between 2012 and 2022. That’s a pretty startling increase.
And since being diagnosed myself, I cannot believe how many women I’ve talked to who were diagnosed young. Or how many women I already knew who had had breast cancer, and I just didn’t know it.
Breast cancer is the leading cause of cancer death among women ages 20 to 49 in the U.S. And women diagnosed before 40 are nearly 40% more likely to die from their breast cancer than women diagnosed after 40.
Ugh. I was diagnosed at 40. Where does that leave me?
This doesn’t mean everyone needs to run out and get a mammogram. And it certainly doesn’t mean younger women need to be afraid.
It means we shouldn’t assume breast cancer is something we don’t need to think about until we’re older.
And here’s something else I didn’t really think about before breast cancer: men can get it too.
It’s rare. About 1 in every 100 breast cancers diagnosed in the United States is found in a man. But men can inherit BRCA mutations just like women can. And they can pass those mutations on to their children.
So men, if breast cancer runs in your family, especially if people were diagnosed young, find out whether anyone had genetic testing and whether a mutation was identified. It matters for you, and it may matter for your kids.
WHAT YOU CAN DO: Don’t assume breast cancer is something you don’t need to think about because you’re young, healthy or male. Know that it can affect you, and know enough about your own history to ask questions.
The point isn’t to be afraid. It’s to pay attention.
Be the quarterback of your own healthcare.
One of the biggest lessons has been learning to be a much more active participant in my own healthcare.
I still can’t believe how many doctors and specialists I’ve seen in the last seven months. And I realized pretty quickly that I was the only person who was in every room.
I spoke to several extremely qualified doctors and sometimes got different medically reasonable recommendations.
Part of that is because different specialists are looking at the same problem through their own lens. As one of my doctors put it, “We don’t read each other’s journals.”
But here’s what surprised me even more: doctors within the same specialty can have different opinions too. Mine did.
I got multiple opinions. I asked a million questions. And sometimes I went back and asked more because I wanted to understand why the answers were different.
Even though I was always respectful, part of me worried that asking so many questions would make me seem difficult. That I was questioning their expertise. Or, even worse, that I was being a bitch.
In hindsight? Well, if they thought that, so be it.
That’s probably not an attitude the pre-cancer version of me would have been comfortable with. I think I would have worried that questioning a doctor meant I didn’t trust them. And really, what did I know?
But I’ve learned that being a “good patient” doesn’t mean being a quiet patient.
You can respect your doctors and still ask questions. You can trust their expertise and still want to understand your options. Getting a second medical opinion doesn’t mean you don’t trust the first doctor.
And if respectfully advocating for yourself makes someone think you’re difficult? They probably aren’t the right person to have on your healthcare team.
Trust your doctors. I absolutely do.
But remember that nobody has more invested in your health than you.
WHAT YOU CAN DO: Write your questions down before an important appointment. Bring someone when you need to. Take notes. Ask the question. Ask it again if you don’t understand the answer. Ask why. Ask what the alternatives are. Get a second opinion when you need one. Speak up when something doesn’t feel right.
Don’t leave a major decision without understanding what you’re deciding and why.
Genetic testing ≠ family history ≠ lifetime risk.
I wasn’t necessarily confused about these things before. I just wasn’t really thinking about them. I was 40, I felt healthy, all four of my grandparents had lived into their 80s, and I had no reason to think I needed to understand the difference between genetic testing, family history and lifetime risk assessment.
Now I do.
They’re connected, but they don’t tell you the same thing. And while breast cancer is what forced me to learn the difference, this isn’t only about breast cancer. Understanding your family history and what it may mean for your own health is much bigger.
Genetic testing: what did, or didn’t, show up in your DNA
I had genetic testing, and it was negative.
That’s reassuring information. But here’s the important part: negative genetic testing does not mean you don’t have a family history. And it doesn’t mean you have no risk of developing breast cancer.
It means the testing didn’t identify a harmful inherited genetic change in the genes that were tested. That’s good information. It just isn’t the whole picture.
One reassuring answer doesn’t necessarily answer every question about your health risk.
Family history: what has actually happened in your family
Before my diagnosis, I thought I knew my family health history reasonably well. I knew the big stuff: cancer, major illnesses, what people had died from.
What I didn’t know nearly as much about were the things people were successfully living with: high cholesterol, high blood pressure, diabetes, heart issues or other conditions that had been managed for years.
There can be a lot hiding in a family health history simply because modern medicine is doing its job. And, in my case, breast cancer was one of those things.
And here’s something else that’s important: when it comes to breast cancer, family history isn’t just about who had it. How old they were when they were diagnosed matters too.
I knew my aunt on my dad’s side had breast cancer, but she was diagnosed much older than I was and was post-menopausal. A diagnosis later in life doesn’t necessarily raise the same concerns about inherited risk as breast cancer diagnosed at a younger age. So neither my doctors nor I thought that one diagnosis, on its own, suggested a particularly strong family history.
What I didn’t know was that there was more breast cancer in my family history than I realized.
After I was diagnosed, we started digging a little deeper and I learned that my mom’s aunt and two of her cousins had also had breast cancer in their 40s.
I had never even met some of them, so how would I even have known that they had breast cancer?
And as one of my doctors explained to me, even with negative genetic testing, multiple younger diagnoses in a family can still matter. There may be an inherited risk that science simply doesn’t know how to identify yet.
You don’t know what you don’t know, unless you ask.
Most people aren’t out there talking about their health problems on the internet and social media like me! If you want to know your family health history, you may actually have to ask.
And quite frankly, I still have work to do here too.
Lifetime risk: more than just genetic testing and family history
This is where I think I had the biggest blind spot.
Your lifetime breast cancer risk is broader than either your genetics or your family history alone. Depending on the assessment, doctors may consider things like your age, family history, breast density, whether you’ve had children, how old you were when you had them, whether you breastfed, and other factors to estimate your risk.
It’s still only an estimate. It can’t tell you whether you personally will or won’t get breast cancer.
But knowing your lifetime risk can change what happens next.
If you’re at higher risk, your doctor may recommend that screening start earlier or that you have additional screening, such as breast MRI, along with mammograms.
And this is the part I really wish I’d known sooner.
I wish I had thought to ask about my lifetime risk well before I turned 40. Once my risk was assessed, I knew I was in a higher-risk category and that my screening plan would include both mammograms and MRIs, staggered so I was being screened twice a year.
I just wish I’d thought to ask about the risk assessment sooner. Maybe I could have caught it at Stage 0. Maybe not.
And you don’t have to understand any of this well enough to figure out which test, calculation or assessment you need. That’s why you’re asking.
WHAT YOU CAN DO: Learn your family health history, on both sides, and write it down. Find out whether anyone in your family has had genetic testing and whether a mutation was identified.
When it comes to breast cancer specifically, ask your OB/GYN or primary-care provider to assess your lifetime breast cancer risk. Don’t wait until you’re 40 to ask. And ask what that risk means for your screening: Should you start earlier? Should you have additional screening?
The point isn’t just to know your risk. It’s to know what you should do because of it.
Know your body.
This one sounds obvious. But I think it’s easy to assume we’d notice if something were wrong with our bodies.
Well, sometimes we do. Sometimes we don’t.
I’ve seen “Feel It on the First” used as an easy reminder, and I love the simplicity of it. Pick the first of the month, take a minute, pay attention and move on.
So what are you even supposed to be paying attention to anyway?
I’ll admit some ignorance here because this isn’t how I found mine. But some of the things to pay attention to are a new lump or thickening, changes in the skin, a nipple that suddenly turns inward, nipple discharge or other nipple changes, changes in the size or shape of a breast, or pain that concerns you.
Reading that list, some of those probably sound like obvious reasons to call a doctor. And they are. But you’d be surprised how easy it is, in real life, to explain something away.
You tell yourself it’s probably nothing. You’re busy. You decide to watch it for a while.
Don’t. If something is new or different, get it checked.
The point isn’t to make yourself crazy looking for something wrong. It’s to know what’s normal for you so that when something changes, you notice it – and importantly, you act on it.
But here’s the really important flip side:
My cancer caused no symptoms.
There was nothing to see or feel. I didn’t have a lump. I felt completely fine.
So please don’t mistake knowing your body for screening. Knowing your body and getting screened are not interchangeable. You need both.
WHAT YOU CAN DO: Know what your normal looks and feels like. Use the first of the month as a reminder if that’s helpful. If something changes or concerns you, don’t sit on it. Call your doctor.
Schedule your screening. And actually go.
Yes, I know mammograms aren’t fun.
Yes, I know appointments get pushed down the list.
Yes, I know I just used the word “pushed” in a paragraph about mammograms…
And yes, I know that when nothing feels wrong, it’s especially easy to put it off.
But this is exactly why we go even when everything feels completely normal.
And here’s something else I’ve thought a lot more about since my diagnosis: it’s easy to tell women to “get screened” when you have access to healthcare. Not everyone does.
If cost or insurance is what’s stopping you, please don’t assume you don’t have options.
Here in our community, the Breast Cancer Collective helps women who are uninsured or underinsured get the breast cancer screening and care they need. That’s a big part of why their work has become so meaningful to me. Access to screening matters too.
There are other resources to explore locally if you need them, including Virginia’s Every Woman’s Life program and Alexandria’s Vola Lawson Breast Cancer Memorial Fund.
Please don’t let your healthcare situation stop you.
WHAT YOU CAN DO: If you’re due or overdue, schedule it. Actually stop reading. Do it now. This article isn’t going anywhere. If you need a recommendation for where to go, please text/email/DM me.
Know your breast density.
Here’s a perfect example of something you can’t learn just by knowing your body.
You cannot feel breast density. You can’t look at your breasts and know whether they’re dense. It has nothing to do with your cup size, how firm or soft your breasts feel, or how they look or move. You can only learn yours from a mammogram.
Here’s why it matters: about half of women 40 and older who get mammograms have dense breast tissue. And having dense breasts can both increase your risk of breast cancer and make cancer harder to see on a mammogram.
So, that’s pretty useful information to have!
Your mammogram report should tell you your breast density. But having dense breasts doesn’t automatically mean you need more testing. It’s just another piece of information to talk through with your doctor when you’re figuring out what’s right for you.
WHAT YOU CAN DO: If you’ve had a mammogram, check your report for your breast density. If it’s dense, ask your doctor whether it changes your screening plan.
Know how to show up when someone you love gets scary news.
Not everything I’ve learned from breast cancer has been about my own health.
I have to admit something here: I have not always been very good at this.
I’m not naturally great with uncomfortable emotions. When someone I cared about was going through something hard, I sometimes worried about saying the wrong thing. Do I bring it up? What if they’re having a good day? What if I make them sad? So sometimes I said or did nothing.
What I’ve learned from my experience is that, at least for me, there really wasn’t one right way to be or right thing to say.
The love and the support I received moved me more than you’d know. The sympathy was admittedly harder for me. I guess I’ve always felt like I needed to be the strong one, so everyone else didn’t have to be. But I learned to accept and even embrace the sympathy too.
What I didn’t want was for cancer to become the only thing people felt like they could talk to me about. I still wanted people to treat me like me.
And I think that’s worth remembering when someone you love is going through something scary. A diagnosis doesn’t suddenly turn them into a different person.
But there’s one thing I genuinely still don’t quite know how to answer.
When people ask me, “How are you?”
Do they mean how is the cancer stuff going? Or do they really just mean simply, how are you? Because those could be two very different answers!
So with me, clarity is actually helpful. If you want to ask me about cancer, just ask. I’m an open book. And if you’d rather talk about literally anything else, that’s completely fine by me too.
And if you have someone in your life going through this and want ideas for something you can send or do for them, reach out to me. I have plenty.
WHAT YOU CAN DO: Show up. Reach out. Offer to help. Don’t overthink whether you’re saying exactly the right thing. Everyone handles fear, grief and pain differently, so pay attention to their cues and listen to what they’re telling you. Try to think less about what you need in that moment (though there’s space for that too) and more about what they need.
More than anything, they may just want to feel normal.
Also, remember that you don’t have to get it exactly right. They know you care.
Do the boring adult stuff before you need it.
And then there are the things nobody really wants to think about until they have to.
Life insurance. Wills. Beneficiaries. Health insurance.
Before I got cancer, we had already taken care of most of these big life items. Thank God!
Because I cannot imagine sitting in the middle of a new cancer diagnosis, terrified and trying to understand what was happening to me, and also having to think for the first time about what would happen to Brooks and Wesley if something happened to me, or having to sit across the table from a lawyer and make those decisions then.
A crisis is a terrible time to start crisis planning.
And this isn’t just about cancer. It’s a heart attack. An accident. A serious illness. Something completely unexpected.
There are also things, life insurance being an obvious example, that may be much easier or less expensive to put in place before a serious diagnosis changes your options.
And health insurance deserves its own mention here. I am incredibly grateful that I had good coverage when I was diagnosed, because I very quickly learned just how much care a serious diagnosis can involve.
WHAT YOU CAN DO: Make sure you have the basics covered: life insurance, a will, current beneficiaries, important documents and health insurance you actually understand. If you’re not sure about something, add it to your list.
Hopefully, you won’t need any of it for a very, very long time.
Take care of what you can control. Let go of what you can’t.
There are plenty of things about our health we simply can’t control, and plenty we still don’t fully understand.
I still don’t know why I got breast cancer at 40. I may never know.
But one of the biggest things I wish I’d understood before breast cancer is that there are also things we can do that may reduce our risk. And some of them go far beyond the things I would have thought of as “healthy” before.
And I think that’s something we should be talking about during Breast Cancer Awareness Month too.
Awareness shouldn’t only be about knowing your risk and getting screened. It should also be about understanding what we know about reducing risk in the first place.
Since my diagnosis, I’ve become much more interested in that question:
What do we actually know about the things that may influence our health and cancer risk that are within our control?
I’ve learned a lot. About morning light and sleep. What we’re exposed to in our own homes. Food and nutrition. Exercise and, importantly, muscle. Alcohol. Stress. Microplastics. PFAS and “forever chemicals.” There are so many things beyond the obvious that I hadn’t thought enough about before.
And I’ve realized that before cancer, I confused being at a healthy weight with being healthy. I thought I ate pretty well, and I did. But it was more about whether food would keep me thin than what it was actually doing to nourish my body.
There’s a lot more I want to share about what I’ve learned about health, the choices we make and (obviously) how our homes can support healthier lives. You know I couldn’t help but go there…
I’ve gone down some very deep rabbit holes and made a lot of changes.
But even knowing there are things we can control, there’s still one thing I wouldn’t put on this list I’ve been building for you:
WHAT YOU DON’T NEED TO DO: Try to do everything perfectly so you never get sick.
Because we can’t control everything. And if I’m going to take stress seriously as part of my health too, I can’t make myself crazy trying to control or eliminate everything that makes life worth living.
So the question I’ve been thinking about is:
How do we make healthier choices without letting the pursuit of perfect health take over our lives?
There’s a balance in there somewhere.
I’m still figuring it out.
But that’s another article…
So, what should you do with this list?
After seven months of learning, and sometimes spiraling, this is the list I wish I’d had before I needed it.
The bottom line?
You don’t have to wait for something scary to happen to start paying attention.
If reading this made you think of something you’ve been meaning to ask, schedule, check or take care of?
Do it.
Take what you need from this list. I wish I’d had it.
Pass it along if you think someone else might need it.
And start now.
Looking For Additional Resources?
We’ve got you covered. Click the button below to download our lifestyle, real estate, and area guides.
