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Mammogram Call Back Anxiety: Real Stories to Relieve Your Fears

Mammogram Call Back Anxiety: Real Stories to Relieve Your Fears

I walked into that examination room and up to the 3D mammogram machine without the tiniest bit of nervous energy. 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.

I didn’t expect a call back mammogram on the same day of my exam, because I didn’t think the exam would reveal a problem.

Mammogram Call Back Same Day

So when my cell phone began vibrating on the table beside me I glanced down at the screen, but didn’t think much of it. I didn’t recognize the number, so I choose to ignore it. 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, it didn’t occur to me that the radiologist might’ve found a suspicious area during my annual cancer screening. It didn’t dawn on me that this was a call I didn’t want to miss.

The Dreaded Mammogram Call Back

Mammogram call back same day.

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, I tried to settle myself. I wasn’t prepared for the dreaded mammogram call back that morning. Who would be?

I took a deep breath and 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.

I Had a 3D Mammogram and They Called Me Back

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 and ultrasound. The doctor requires additional imaging. Would you like to schedule that now,” she asks?

“Yes,” I say without a moment of hesitation. “That will cost $371,” the receptionist says. “Fine, fine,” I tell her as if money matters at all at this moment.

“Okay,” she says. “You are scheduled for a diagnostic mammogram and ultrasound, but on the day of your appointment you’ll need a referral.”

I hang up the phone and immediately call my gynecologist. Of course, the nurse isn’t at her desk, so I leave a message. Slowly, I state my name. Then I spell it twice and repeat my phone number three times.

I want the gynecologist’s staff to call me back immediately, so I make damn sure they know who I am and which number to call.

I Am Waiting for Mammogram Results, and I’m Terrified

As I wait the world keeps on spinning. I wait for mammogram results that might change everything, and I’m terrified.

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.

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 mammogram report and read it to you.”

Architectural Distortion on Mammogram Results

“There is a focus of architectural distortion in the left breast,” she says, “and suspicious microcalcifications.”

I’m immediately scared and anxious. My mind swirls with frightening thoughts.

“They want you to repeat the test with a follow up mammogram. This often occurs after an abnormal finding is found during your annual cancer screening. The technicians will get a closer look and then perform an ultrasound. The doctor already took a look at your results. He thinks it’s a good idea to get retested. I’ll send in the referral for you.”

That’s it. The nurse 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.”

There is a HUGE difference between suspicious and not suspicious. I’ve never been so grateful to hear the word NOT used in a sentence before. At least now, I’m only dealing with one abnormal finding on my mammogram report.

Dr. Google

fitness bra

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 breast’s upper, outer quadrant, 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. Breast cancer is not like an embolism. It’s 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 feel my hands shaking as I type words into my computer. Can I overcome anxiety as it rushes over me?

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 published 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.”

Architectural Distortion Statistics

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 represent invasive breast cancer is very low, perhaps 5%-7% of the 4% with architectural distortion, which becomes a much 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, radiologists will call back 10% of women who have a mammogram for further testing. Some women will be 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: Doctors will give 90% of women returning for a call back mammogram the all-clear after subsequent tests are complete.

My Mammogram: Architectural Distortion

I open my digital mammogram images and scan for the architectural distortion. I’m not a radiologist, but I find the spot immediately. It’s a small, bright white piece of tissue surrounded by four or five long strands. It looks different than the rest of my mammogram.

I browse through the images of my prior annual screening. It looks different from those breast images too.

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? Will my next mammogram report reveal breast cancer?

The Follow Up Mammogram

On the day of my follow up mammogram and ultrasound, I try to remain calm. I find ways to distract myself. I try to think about anything other than this test or what a positive result might mean. But, no matter how hard I try, my mind starts to wander, and the anxiety builds.

Will they perform a breast 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.

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 my breast and explains that I’m being called back due to breast asymmetry. The appearance of that spot doesn’t look like the rest of my breast or my other breast.

She explains that she’ll take additional images and compare them to the prior images taken during my routine mammogram. If everything looks perfect, I won’t need to undergo an ultrasound. But if anything is wrong, I’ll need an ultrasound and possibly a biopsy. 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.”

Called Back for Ultrasound After Mammogram

I’m led back to the hallway. I return to my pea-green seat and quietly hope that everything looks okay. Here I am, waiting for mammogram results for the second time in two weeks. The terror begins to overtake my already shaky composure.

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 second mammogram.

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 she 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.” 

At that moment, I realize I’ve been holding my breath. I slowly and calmly exhale.

Calming Mammogram Call Back Anxiety

If you receive a call back for a mammogram, you are probably feeling overwhelmed and terrified. I understand that anxiety all too well.

Mammogram call back anxiety can leave you feeling nervous and tense. The moment you receive that call, you may feel an impending sense of panic and doom. Please know that you are not alone.

I know how scary it is to wait for a repeat mammogram or additional testing and how alone you might feel. If you are experiencing mammogram callback anxiety, please talk to a friend or reach out below.

Mammogram Call Back Statistics

I wish you the best of luck as you undergo further testing and I hope that your future scans are all clear too.

Getting called back for a diagnostic mammogram is not that unusual. Over a ten year period 50% of women will receive a false positive result. There is good news though. While a lot of women are getting called back to check their breast health, less than 1% will receive a cancer diagnosis.

If you are feeling terrified and anxious reflect on that number for a moment. The majority of women who return for a follow up mammogram will be given the all clear!

Mammogram Call Back Stories

Not so long ago, I scoured the Internet in search of happy endings. Now readers stumble across these words and leave their mammogram call back stories in the comments below. I hope these stories reduce your fears. After receiving the results from repeat mammograms, commenters return to let me know their tests are all clear. If you receive good news after your call back mammogram please let me know. Each comment helps other anxious women who stumble across this post in search of good news.

** Part two of this story can be found here: Life is Fragile: Make the Most of Limited Time.

Tiffany Patterson

Sunday 1st of May 2022

My last mammogram in 2019 was normal but unfortunately amidst Covid I ended up missing my routine mammograms for the last three years. Finally got my mammogram done about two weeks ago and got a call back from my doctors office the very next morning to let me know that they found a questionable cluster of microcalcifications on the right breast upper outer side. So of course I have been non stop googling and driving not only myself crazy but my family. I am finally getting my next mammogram and ultrasound done this upcoming Tuesday. I’m praying for good news but I am so emotionally exhausted from the continuous worrying.

Heather

Monday 7th of March 2022

I had my very first mammogram this last Friday at age 50. My mom had breast cancer so out of fear I kept putting off my mammogram. This year I have decided to take the bull by the horns and suck it up and get it done and take charge of my health. This morning I got a call indicating that there were some differences between my two breasts that they want to have a closer look at and am scheduled for an ultrasound a week from today. So in my immediate panic all of my fears about getting the mammogram have been realized. So now, I wait a week and am utterly terrified. I have been on google all day. In some ways its been positive results and some others not so much. I dont have many women in my life to compare stories with, so am grateful to have found this group. If anyone has gone through something similar some positive words and stories would be much appreciated. Thanks in advance ❤️

One Frugal Girl

Monday 11th of April 2022

@Heather, I'm sorry it's taken me so long to respond to your comment. I hope your test was all clear.

Susan Sinacola

Friday 4th of February 2022

First, I want to thank you for sharing your story. I have reread your post three times today and the comments. I found this today after researching the web since November. On November 15, 2021 I went for a routine diagnostic mammogram and diagnostic ultrasound. My physician always orders a diagnostic so I can have the results the same day and be done. I have been seen at the same facility for years and have the utmost trust in this diagnostic center. Even though I go every year I am anxious about going as I think most of us share the same type of anxiousness. I know most everyone there except this time is was different. Due to COVID there is a shortage of staff and relocating of staff from different areas. I had technician I didn't recognize and a trainee with her. Anxiety already starts to build. My mammogram was completed along with my ultrasound. The ultrasound was fine. I sat waiting and when my name was called I popped up and the tech said the radiologist would like more films. I started to pray and felt the tears coming. I had already had my physical, eye exam, all the preventative for the year and this was the last procedure to complete. I was in disbelief and silently praying. The anxiety overwhelmed me but I followed the tech. I waited as if it was forever. I am in the medical field and my mind went wild. I kept telling myself they are great here and very cautious. This is all they do, etc. I was called to another room and given my report. The report stated "Possible architectural distortion in the inferior R breast on the MLO but does not persist on the two additional compression films of the R breast with tomosynthesis". Probably benign study. Repeat R breast mammogram in 6 months do ultrasound only if needed). I tried to focus on the additional films that were clear. I called my spouse immediately crying and heard the calming voice say, "You know how they are they function at a level with an abundance of caution and that's why they are doing a repeat mammogram. Also, you stated the additional films were clear. You are at the best place and you know that." I knew that but why doesn't any of this help. Today I was not googling or researching any more but of course I sat down at my desk here at home and can't help myself. On to Dr. Google. Your site came up and I am so glad I decided to google again. I am glad I did. I found you. I want to thank you for the research you completed and shared. Everything I read about architectural distortion (never heard of it before) frightened me (as others have stated) even after consulting a friend who completes mammograms on a regular basis said it's common and think only about the additional films are clear. Again stating as my spouse did they are doing what they do best. Being able to share this and see what others have been through moved me to write this. I am not waiting 6 months. I have scheduled mine for the end of February. I am grateful you have this blog. Thank you again and all of you who have shared comments.

One Frugal Girl

Wednesday 9th of February 2022

Susan, thank you for leaving this comment and letting me know that it eased your worries ever so slighly. I wish you the best of luck and hope that everything turns out just fine.

Stephanie

Tuesday 1st of February 2022

I just got my call back this morning and I am thankful to find this article. I have lived this step by step. You are spot on with your synopsis. For a moment I can breathe.

Thank You

Within two hours of talking to my husband, a dozen roses showed up here.

I am blessed.

Stephanie

Tuesday 1st of February 2022

I just got my call back this morning and I am thankful to find this article. I have lived this step by step. You are spot on with your synopsis. For a moment I can breathe.

Thank You

Within two hours of talking to my husband, a dozen roses showed up here.

I am blessed.

One Frugal Girl

Wednesday 2nd of February 2022

Your husband sounds like a wonderful guy. I hope that your follow up tests are all clear and that you don't have a thing to worry about moving forward.