I walked into that first mammogram room without the least bit of nervous energy. In fact, I chatted with the technician as she performed the test. She was a nice older woman who told me she loved her job and performed more mammograms than she could count in a day.
When the test was over I thanked that smiling tech, put my bra and shirt back on and cheerfully went about the rest of my day. I never thought I’d be back in that same exam room for a follow up mammogram a few weeks later.
Ten days after that exam my cell phone began vibrating on the table beside me. I glanced down at the screen. I didn’t recognize the number so I choose to ignore it. In fact, I flipped the phone over and returned to the game of Monopoly Junior I was playing with my four year old.
If the caller ID doesn’t show one of four numbers, (my husband’s cell phone, my parent’s house or one of my children’s schools), I assume someone is trying to sell me something. If it’s important they’ll leave a message.
At that moment my brain didn’t register that it could be something important; something I didn’t want to miss.
The Dreaded Mammogram Call Back
Later that day a bright red #4 appeared on the phone icon on my cell. I clicked on it and found two missed calls and two voice mails waiting for me.
I fully expected them to be SPAM. The first, was a young woman offering to lower my debts. Yup, SPAM just like I thought it would be, but the second message was not the robotic voice I expected to hear.
“This is the radiology department…,” the kind, melodic voice said. My heart started to race and I immediately took a seat.
I restarted the message from the beginning. “This is the radiology department. Please call us regarding your recent mammogram,” the voice said.
Then the caller provided the call back number; a string of digits I couldn’t write down as quickly as she recited them. I returned to the beginning of the message over and over. By the fourth time I’d gathered them all.
Before I called the radiology department back I tried to settle myself. I took a deep breath. I reminded myself that no one in my family has ever had breast cancer. Then I slowly and carefully dialed the number as though I was entering secret, nuclear launch codes. I paused after I pushed each button on the phone.
A Follow Up Mammogram is Necessary
The kind receptionist can’t provide many details. “I’m not a doctor. I can’t tell you what they see only that you need to come back in for a follow up mammogram. Would you like to schedule that now,” she asks.
“Yes,” I say without a moment of hesitation. “That will cost $371,” she says. “Fine, fine,” I tell her as if money matters at all in this moment.
“And you’ll need a referral,” she says, so I hang up and immediately call my gynecologist. Of course the nurse isn’t at her desk so I need to leave a message. I say my name twice, spell it twice, and then repeat my phone number incredibly slowly three times.
I want them to call me back immediately, so I make damn sure they know who I am and which number to call.
Then I wait. I sit in my basement watching my four year old race marbles. After each race my son walks over and shows me the marble that won. I fight back my tears as I watch him and wait for the phone to ring.
Suspicious Mammogram Findings
Two hours later the nurse calls back. “You were next on my list of patients to call,” she says sounding surprisingly chipper. “Let me pull up your report and read it to you.”
“There is a focus of architectural distortion in the left breast,” she says, “and suspicious microcalcifications. They want you to repeat the test with a follow up mammogram. They’ll get a closer look and then perform an ultrasound. The doctor already took a look. He thinks it’s a good idea to get retested. I’ll send in the referral for you.”
That’s it. She hangs up the phone. She can’t provide any other information. A minute passes and the phone rings again. It’s the nurse calling back, “oh sorry,” she says, “I misread the report. It says it’s NOT suspicious. I thought you would like to know that.”
Clearly, there is a HUGE difference between suspicious and not suspicious. I am grateful she called back to let me know.
I take a deep breath. One of those deep, deep breaths where it feels like your lungs sucked in all of the air around you.
Then I pull out my laptop and immediately consult Dr. Google. I have so many unanswered questions.
- How often do people get called back for a follow up mammogram?
- How often are forty year olds diagnosed with cancer?
- Where in the breast is cancer typically found?
I find the answers:
- Did you know that breast cancer occurs most often on the left side of the body?
- Or that 50 percent of malignant lumps appear in the upper, outer quadrant of the breast, extending into the armpit, where tissue is thicker than elsewhere?
- Did you know that younger women tend to get more aggressive cancers and have a lower chance of survival?
No? I didn’t know any of it either.
The tissue in question is on my left side, in the upper quadrant and I am younger than fifty, so I’m batting three for three.
Mammogram Call Back Fear and Anxiety
This isn’t my first medical crisis. I’ve faced medical traumas, in the past. I nearly died of a pulmonary embolism at age twenty-seven, but this time it’s different. An embolism occurs quickly. You don’t have time to worry about it. You barely have time to get to the hospital. Cancer is typically drawn out and painful, plus this time I have kids.
I am anxious and terrified. Having kids changes everything. I look down at my four-year-old and feel hot tears pouring down on my cheeks. I put down the laptop and snuggle my little one into my lap. The tears drip onto his face and he looks up and asks why I’m crying.
“I just love you,” I tell him, because it’s true.
The Facts: Architectural Distortion
Later that night I decide to search Google again. This time I’m armed with specific questions about architectural distortion. I’m terrified. I mean scared right down to the bone.
I’ve received questionable results from blood tests in the past, but I’ve never felt this frightened before. Every website tells me architectural distortion is the third most common sign of cancer and that the most aggressive types of cancer are often discovered this way.
I promise myself I can only search the Internet for a few more minutes. I’ll drive myself crazy if I keep reading about breast cancer. I search one more time and come across an article publish in May of 2019 by Moose and Doc.
It says, “Breast cancer commonly causes architectural distortion.” It also says, “Architectural distortion uncommonly indicates cancer. More common is for architectural distortion to be ‘imaginary’ in the perception of the radiologist.”
An article about mammogram abnormalities also says, “Specialists estimate that around 4% of women who undertake a screening mammogram present with an architectural distortion. The number of those women in which the architectural distortion would actually represent invasive breast cancer is very low, perhaps 5%-7% of the 4% with architectural distortion, which becomes a very small number.”
My heart stops racing. I have a 93% chance that this abnormality won’t be breast cancer. Why couldn’t I have found that link earlier?
Another helpful piece of information. According to the American Cancer Society, about 10% of women who have a mammogram will be called back for further testing. In fact, some women are called back for a mammogram on the same day they took the initial test. It all depends on how quickly the radiologist reviews images.
The good news: 90% of women returning for a call back mammogram will be given the all clear after subsequent tests are complete.
I open my digital mammogram images and scan for the architectural distortion. I’m not a radiologist but I find the spot immediately. A small, bright white piece of tissue surrounded by four or five long strands. It doesn’t look like any other parts of the mammogram.
I take a snapshot of that image and obsess over it for ten days. I look at it once every morning and once every evening before bed. Oh and another fifty times throughout the day. I can’t stop thinking about that bright white spot on my mammogram. What is it and what does it mean for me?
The Follow Up Mammogram
On the day of my follow up mammogram I try to remain calm. I find ways to distract myself. I try to think about anything other than this test and what a positive result might mean, but my mind starts to wander and the anxiety builds.
Will they perform a biopsy? Will I find out if I have cancer right there on site? How would I find an oncologist if I needed one? How quickly could I schedule an appointment to be seen?
My mind is racing, but I keep thinking back to that 93% number. The odds are definitely in my favor.
I’m perfectly fine until I go to get undressed. As I place that pink hospital gown around my bare chest I feel the tears drop down my cheeks. I brush them away. I try to act brave.
My husband jokes about the urine colored walls and other fabulous decorating choices. Then I hear my name being called.
The technician shows me an image from my first mammogram. She points to that bright white spot of tissue that looks unlike the rest of image.
She explains that she’ll take a bunch of pictures and if everything looks perfect I won’t need to undergo an ultrasound. I start to cry. She tells me to try not to worry.
Then she places my breast on the imaging machine and presses a clear piece of plastic against it. She moves my body, rolls my breast one way and then another. Squeezing it each time between the plastic plate. She asks me to hold my breath while she takes the pictures and then says, “You’re all done. The doctor will look at your images now.”
I’m led back to the hallway. I return to my pea green seat and quietly hope that everything looks good. The technician steps out a few minutes later. “They’ll need an ultrasound,” she says and I feel the panic set in.
She just told me they wouldn’t call me in for an ultrasound unless they saw something on my latest mammogram. Clearly they see something on the new film.
This time my husband can come along. He jokes about the ambiance in the room. The dim lights, the fact that I’m taking my shirt off and lying on a small bed. I’m thankful he’s with me. That he’s able to take off work to sit beside me and crack jokes to ease my mind.
The ultrasound technician squirts gel onto my chest and then starts to move the wand across my skin. I can see the monitor as she moves it over me. A small, black, circular spot appears. She measures it once, twice and then a third time.
She moves the wand further up and down my breast. Then abruptly stops. “All I see is a lymph node,” she says, “nothing more. I’ll call the doctor in now.”
Within a minute or two the doctor appears beside my bed. He shakes my hand, introduces himself and says, “I don’t see any cancer. I didn’t see anything on your follow up mammogram, but I wanted to be 100% sure with the ultrasound.”
I suddenly realize I’ve been holding my breath, so I slowly and calmly exhale.
** Part two of this story can be found here: Life is Fragile: Make the Most of Limited Time.