My Boring Cancer, Part 2: The three annoying things I didn’t know would save my life.
If this is the first post of this series that you’re reading, I suggest you start with Part 1, published on Oct 1.
2.1
Much like my first post, this one starts way back in 2014, about 10 months into my first year of motherhood, when I started having issues with my breasts.
And by “issues,” I mean problems beyond the usual hardships that ensue when your boobs explode with milk, confining you (if you choose to breastfeed and are able) to weeks on a couch with a Boppy strapped to you as your child’s sole source of nutrition. (This amazing pic that I was mad at my husband for taking pretty much sums up my breastfeeding experience.)
It started with a visit to my OBGYN that included a breast exam; she felt a suspicious lump and sent me to a specialist for a second opinion and possible biopsy. And let me tell you, biopsies are hard enough on a non-lactating body, but a core needle biopsy while breastfeeding is about as fun as chewing on glass. (My breast agreed and literally spat out the pin they inserted, apparently a first for my medical team.)
In any case, this began my relationship with a breast surgeon, or as I call her, my boob doctor. This relationship proved further necessary as I developed infections related to nursing, eventually needing a month of antibiotics. My breastfeeding days were ultimately cut short because of this udder chaos. (Oof, sorry. I couldn’t resist.)
I really liked this new boob doctor and soon learned that she was one of the best around. But even though that initial biopsy was benign, it was the first of about three I would need over the next several years, all eventually explained by unusually dense breast tissue. I tell you all this not to complain about my troublesome tits, but to set some important context for the story at hand. I spent years growing resentful for the repeated miserable experience of a biopsy that turned out to be nothing; my gratitude for all the preventive measures waned, and I was exhausted by the shitty bedside manners of medical people who would handle my breasts like they were mounds of hardened clay, unattached to a human being.
But.
What was also happening was something I could not have appreciated at the time: this continued access to specialists – as annoying as it was – was the first thing that saved my life.
2.2
Ladies, raise your hand if you’ve been told (by a doctor) that you have dense breasts.
Nearly every friend I have who gets breast exams has been given that label, me included. Supposedly it applies to about half of women over 40, and there’s a spectrum of density. For most of my life, I didn’t think much of it. I started paying a little more attention when they told me my dense breasts meant I needed to get ultrasounds with every mammogram, mostly because that made for very long annual appointments (and yes, after all the above fiascos, I went in every year from age 36).
My last annual mammogram/ultrasound screening was in March of 2023. I had gotten into a yearly habit of going in for my scans, and then seeing my boob doc afterward for a manual exam; the two offices are one floor apart in a Manhattan skyrise. Sometimes I would need another ultrasound at the six-month mark if there was something they were watching. For 10 years I did this with no dramatic findings, but a lot of radiology bills.
In that March appointment, I didn’t even see the doc herself but instead met with her assistant. The PA explained that they wanted to revisit my family history and other circumstances, because my updated risk score might determine that I needed even more enhanced screening – or at least, that enhanced screening should be covered by my insurance. She didn’t name the tool, but I believe it to be the Breast Cancer Risk Assessment. I learned that day that there is a genetic link between ovarian and breast cancer, because when I mentioned that my great-grandmother died of ovarian cancer, this was new information to them – and it may have been the tipping point that nudged my score into a higher risk category. Even after all the false alarms and monitoring, being labeled high-risk was a first for me. And, it was the second thing that would save my life.
2.3
That shiny new high score qualified me for an MRI screening, which they wanted me to get six months later; I had a specific window of time to get it, and after that it would no longer be covered by insurance. I made the appointment, then had to reschedule, squeezing it into my packed calendar a day or two before my coverage deadline.
It was that MRI – that MRI that I almost didn’t get because what a pain but I did get in October of 2023 – that caught it: my 1.5 cm of cancer. As it turns out, I was the third thing that saved my life – I followed directions, and got the scan.
You see, if my little peach pit was present in my usual scans six months earlier, it didn’t show up; they don’t know whether it was or wasn’t. You may know this but I’m betting you don’t because I didn’t: mammograms can’t see all cancers in dense breasts. It’s why you should be getting ultrasounds too if your breasts are dense, but even the ultrasound may not be enough. My cancer was lobular (as opposed to ductal) which is a common type that can be harder to spot within dense breasts on a mammogram, something that the medical establishment has seemed to come to terms with only in the last decade or so.
It was because my specialist doctor reassessed my risk, and that my newly-defined risk level qualified me for an MRI, that we caught it early.
It would have been very easy for me to just wait for another set of standard scans in the following March – by then maybe it would have been large enough to catch via mammography or manual exam, but who knows what stage it would have progressed to – it could have metastasized (ie. spread to other areas of my body). My boob doc told me later that she’s seen women with enormous lobular tumors that literally were not visible on mammograms.
If this sounds at all familiar, actress Olivia Munn recently told her story about being diagnosed with breast cancer (in both breasts) under very similar circumstances. Another powerful, in-real-time cancer story can be found on the We Can Do Hard Things podcast (starting here, listen to the series of episodes – not all sequential – about Amanda Doyle’s diagnosis and journey; they go into some very helpful details about dense breasts).
2.4
So here’s where I get to the PSA part of all of this, best summarized by the American Cancer Society (ACS):
“If…you have dense breast tissue, talk with your health care provider about what this means for you. Be sure that your doctor or nurse knows if there’s anything in your medical history that increases your risk for breast cancer…Any woman who’s already in a high-risk group (based on inherited gene mutations, a strong family history of breast cancer, or other factors) should have an MRI along with her yearly mammogram.”
People with breasts, especially dense ones: if your OBGYN or other provider is NOT proactively offering you a Breast Cancer Risk Assessment (and many don’t), then ask for one. You may be at higher risk than you or they realized, and you may qualify for enhanced screening; dense breasts alone not only put you at higher risk for cancer, they can make the cancer harder to find. You don’t have to get your actual genes tested; you can do this by answering questions and knowing a bit about your family history. (If you are adopted, for instance, and don’t know your family history, I’d recommend finding a genetic counselor.)
Most patients don’t have a team of specialists already in place for when they are diagnosed with breast cancer. A lot of people don’t even have insurance when they’re diagnosed, and often in those cases it was found palpably, and much farther along because the person wasn’t being regularly screened. (In the U.S., only in states that didn’t expand Medicaid, in 2016 almost 36% of those diagnosed didn’t have insurance. Please know that if you aren’t insured and you are diagnosed, you may be eligible for the Medicaid Breast and Cervical Cancer Treatment Program; every state has one.) Because of my turbulent history of boob issues, I started out ahead of the game: I had a crackerjack breast surgeon. It wasn’t until I was well into my cancer journey that I fully realized how rare that is and how fortunate I’ve been.
Aside from, you know, having cancer.
That’s the thing - for this whole experience I’ve been in a suspended state of cognitive dissonance. On one hand: I caught it before it got really bad, and all of these breadcrumbs led me to a successful treatment and a cancer-free life. But on the other: I just as soon would have gone without the cancer in the first place.
I’ve been holding two conflicting realities at all times. Grateful? Yes. Pissed off? Also yes.
I think this is common among us in “the club.” The WhyMeButAtLeastI’mNotDead mentality. I hear the gratitude grows the farther away you get from the treatment process, and I guess I’m at the beginning of that phase.
But.
I don’t think I will ever fully lose the acute sadness and bits of rage that come with the slow acceptance that this is just… my life now. I’m the one in eight.
I’m your canary in the coal mine.
~~~~
Here’s where I leave you again until next time. Coming up in Part 3: how the treatment went, and what the hell I was thinking working through it all.
As I did last time, I’m signing off with some relevant learnings for those who may be going through this or know someone who is, or just want to file this away in case it might be helpful someday:
If you are among the recently diagnosed, as soon as you can have a face to face conversation with a survivor who had a similar diagnosis and treatment plan. I didn’t feel like I could fully breathe until I connected with a friend of a friend who’d gone through a rough diagnosis and stretch of treatment years before me. She was happy to support me, so we FaceTimed for almost two hours one day, and..I felt like I’d just been rescued from being stranded on an island. She said something I never forgot: “You are surrounded by people who love you, but you feel so alone.” That proved true over and over again. Support groups might provide similar comfort, but I never tried one because I only wanted to connect with women with similar circumstances: moms with young kids who had to do chemo, etc. Now a survivor myself, I will also leap at an invitation to connect with someone grappling with a recent diagnosis. It’s like our club dues – we all want to pay it forward.
If you are not a patient but are looking for ways to help: understand how breast cancer is an issue in the election and become an advocate. Or at the very least, know how your vote can save lives. The federal government has a huge role to play in terms of research and funding, and in terms of access to care. Or join one of the Making Strides walks that the ACS is hosting this month around the country. And forward this post to the women in your life.
DISCLAIMER: I’m not a doctor, I’m a patient. I’m telling this story through the eyes of a laywoman, not an expert. Don’t take anything I say for absolute medical truth; I’m not always going to cite my sources so please double check all stated facts.
