In this day and age where most of the communication with your doctor is through an online portal, there is nothing scarier than getting an actual call from their office. That’s what happened to me. They found something on my mammogram.

The Word That Shall Not Be Spoken

No one said the word out loud but that didn’t stop it from running through my head. The scary word, the dreaded word that carried the weight of the world in two unrelenting syllables. Cancer.

They don’t want to scare you, of course. As a physician, I know that more than most. A number of my patients got calls from the radiology department about abnormal mammograms and I made a fair share of calls myself. Whether it’s getting more images or even a biopsy, no one wants to say something that is going to cause unnecessary worry. They need hard core data that will guide them to a diagnosis and steer you from a litany of what ifs.

Dealing with an Abnormal Result

It sure feels different on this side of it though. The medical team may not want to cause unnecessary worry but you worry all the same.

In my case, the something on my mammogram was a new “oblong density” in one breast that was not seen on my last study. Because I had dense breasts (a radiologic term, not something you can feel), I am technically at higher risk for breast cancer in my lifetime. Even though I was hopeful for good news, anxiety naturally followed.

The problem is that the medical establishment does not always care about your schedule, wants, or needs. There are only so many appointments to go around. My everyday life, my focus, my ability to get things done, at least well, was mentally on hold. I was left biting my nails until someone could literally squeeze me in for extra images.

One of the Lucky Ones

Still, I know I am one of the lucky ones. I have insurance. Many women are uninsured and can’t get the tests or care they need in the first place. In the United States, KFF reports that as many as 9% of female citizens and 31% of female non-citizens under 65 don’t have any health coverage. Those numbers may or may not include trans individuals who could be at risk for breast cancer based on their genetics or ongoing hormone treatments.

Even with insurance, many women are unable to afford the cost of breast cancer treatment. According to BreastCancer.org, nearly half of women struggle to pay for their care. It’s not fair that anyone should have to worry about costs over their actual health.

It so happens I also got lucky with an appointment. A radiologist needed to be on site to read the extra images and someone cancelled their appointment minutes before I scheduled mine. Pure happenstance. Sure, I had to drive to another facility several cities away but again, I was lucky. I had a means of transportation. Not all women do. If that time slot hadn’t opened up, I would have had to wait weeks for an appointment but now I only had to wait one. The seven days were long enough.

To Share or Not to Share

“It’s just a little health scare,” I told myself. “It’s probably nothing.”

My mind slippery sloped like a squirrel chases nuts. My first thought was not for myself but for my kids. What would happen if I got bad news? Would they have everything they need if things didn’t work out? Had I done enough to secure their future? I took a deep breath and reeled in those slippery thoughts.

Then, I zoned in on the now. Should I even tell anyone I had an abnormal mammogram? It would be selfish of me to get them worried if it turned out to be nothing. No doubt my family and friends would wonder why I was more squirrelly than usual while I waited for my test, but it was better than getting them worked up about something that may never come to pass. Protecting them seemed the right thing to do. Typical mom behavior.

Then, I thought, these are people I love, people I trust, people I hoped would talk to me if they were worried about something in their lives. Our relationship goes both ways. For my well-being, I reached out to a handful of people (my husband, my sister, and a friend), not to complain, not to freak out or catastrophize, but to simply let them know I was “going through some stuff”. I had an outlet if I needed it and that matters so much to me.

What About False Positives?

The week passed by slowly and I did some homework along the way. It turns out the rate of false positive mammograms was higher than I thought, though that was not really a consolation to me at the time, not while I was still waiting for my own results.

Digital breast tomosynthesis (also known as a 3D mammogram) is less likely to give you a false positive result than a digital mammogram but not by much. Believe it or not, the rate for a false positive over 10 years of yearly screenings is 49.6% vs. 56.3% respectively. Yes, results are 6.7% better with a 3D mammogram but about half of women still get a false positive result. Yikes!

So, I let them squish my boob into extreme yoga positions, contorting it into every possible configuration. I can still hear the words of the radiology technician as she placed me into the mammogram machine. “Let’s see what we fi–.” She stopped before landing on the hard consonants. “Finding” something implied something was there. “Finding” implied a bad outcome. “Finding” could be cancer. She quickly changed it to, “Let’s see if we see anything,” as if there might be nothing to see at all.

Getting the Results

The nice thing about having a radiologist on site is that you do not have to wait for your result. You’ll know right away if things look okay or if there’s still a concern. Lucky for me, I fell into the first category. Everything is fine and I can breathe a sigh of relief.

Women in the second category will need to follow up with more tests and procedures. Those tests can have false positives too. Again, I was lucky that I did not have to go down a longer, more anxiety-provoking path to find out I didn’t have cancer. All that time, all those resources, all that worry. Women go through so much as it is.

I have always considered myself an empathetic physician. Some have even said I am too empathetic. But this experience is a stark reminder that medicine needs to be even more mindful of the patient. The medical team is more than a diagnostic/treatment system. It must also be a support system.

Thank You

I especially appreciated that technician who, despite her routine of doing test after test, despite being tired from a long day on the job (we’ve all been there!), realized how a simple turn of phrase could affect someone else. To her, I was not just a patient. I was a woman worried about her health. That act of kindness, that acknowledgement, goes a long way. More people in medicine need to do the same.

 

Dense Breasts: Answers to Commonly Asked Questions. (2022). National Cancer Institute. https://www.cancer.gov/types/breast/breast-changes/dense-breasts

Ho, T.-Q. H., Bissell, M. C. S., Kerlikowske, K., Hubbard, R. A., Sprague, B. L., Lee, C. I., Tice, J. A., Tosteson, A. N. A., & Miglioretti, D. L. (2022). Cumulative Probability of False-Positive Results After 10 Years of Screening With Digital Breast Tomosynthesis vs Digital Mammography. JAMA Network Open, 5(3), e222440. https://doi.org/10.1001/jamanetworkopen.2022.2440

Many Young Women Have Financial Problems After Breast Cancer Diagnosis, Even With Insurance. (2020). Breastcancer.org. https://www.breastcancer.org/research-news/financial-problems-after-dx-despite-insurance

Women’s Health Insurance Coverage. (2022). KFF. https://www.kff.org/womens-health-policy/fact-sheet/womens-health-insurance-coverage/