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Mammogram Call Back Anxiety: Stories to Relieve Your Fears

Mammogram Call Back Anxiety: Stories to Relieve Your Fears

Years ago, I wrote this post to help other women struggling with mammogram call back anxiety. Since then, more than one hundred women have provided mammogram call back stories of their own.

If a mammogram call back has left you feeling anxious or afraid, I encourage you to read this post and the comments below.

More than one hundred women have returned to this post to let me know their mammogram call back results were all clear.

I don’t know what your follow-up scans will reveal, but I believe you will find hope and encouragement here.

My Story

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 anxiety
Mammogram call back anxiety.

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. It’s normal to feel anxiety waiting for mammogram results, but I can’t put my mind at ease.

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 Scared Anxiety

“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

mammogram call back stories

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 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 and lets me know I will receive my mammogram call back results that same day.

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.

I try to console myself, at least I’ll receive same day results for this mammogram call back. At least I won’t have to go home to wait for the news.

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.

If you are feeling nervous about a mammogram callback please read the words of the brave women who kindly shared their stories below. I hope their stories reduce your fears and anxieties. 

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.

Lisa

Friday 2nd of December 2022

Ladies, I just wanted to add another positive, happy outcome. I, too, got the dreaded mammogram call back the day before Thanksgiving. I have high anxiety normally, but this kicked it into high gear. All I knew from the call was that the Dr found asymmetry and distortion on my right breast. Google is not your friend. I immediately convinced myself after doing too much research, that it was my turn to get that horrible diagnosis. To wait an agonizing week was difficult. I could not sleep or eat. I was a wreck. This blog was the only thing that calmed me. I read the stats, but someone out of 10 was not going to have a good outcome. Why not me? I'm not exempt. The day of the call back came. Another 6 pics of my right breast. It did not help that when I walked into the room my previous mammogram was on a screen, blown up in size, with the suspicious area circled. It terrified me. After that, the technician said she was going to show them to the Dr and let me know. More waiting. She came back and Dr still wanted an ultrasound. Ugh, panic again. Walked into the ultrasound room and the tech assured me that 90% of call back mammograms also included an ultrasound to be 100% sure. She worked her wand, then left and said she or the Dr would be back in to talk to me. 10 min later she came back and said, " ALL IS GOOD" She said I had several cysts, that are new to me. I almost passed out with relief.

Ladies, please know that distortion or asymmetry can mean absolutely anything! It mostly ends up being very benign. Remember, the stats are on your side and breathe. I can say that now, but when I was going through it it was tortuous.

I wish you all the same good results. I prayer in the dressing room for all of the woman waiting as I have been and continue to do so!

FL124

Wednesday 30th of November 2022

I am 41 and had my second mammogram on Friday. I got the dreaded call today that there are 2 masses in my left breast. She said they are probably cysts but my breasts are so dense they can’t tell. I’ve known since a teenager that I have dense, fibrocystic breasts. I’ve had many cysts in my lifetime but that isn’t erasing my anxiety right now. I am a ball of nerves and the first available they had was in 12 days! Coming across this article and reading the stories is helping.

Anca

Thursday 1st of December 2022

@FL124, I know 12 days is a looong time. I had a slightly shorter wait, 7 days. I found that one day at a time feels more bearable, actually, one hour at a time is even better. Hope you get good news

Anca

Monday 28th of November 2022

Thank you so very much for this forum.

I had a biopsy of a small growth on my face six weeks ago. This was the first biopsy I've ever had. The ten-day wait for the results was beyond terrifying. I eventually got the all-clear and felt ecstatic. The pink cloud lasted until...

A week ago I had my annual screening mammogram. I got "the call" the next day and the nurse told me they found asymmetry in my left breast so I would have to go back in for additional imaging and possibly an ultrasound in a week (this was Thanksgiving week, so that made it additionally sucky).

I read this forum forwards and back and kept trying to reassure myself, but I was petrified, especially on the heels of the other cancer scare. I meditated, I prayed, I talked to family and friends, but I was still very scared.

I went in today for the additional screening, I was nauseous with fear. Then the tech said they would need an ultrasound. I felt my chances of being cleared just got smaller. It was a long ultrasound. Then the doc came in and said everything was normal, but she herself wanted to do a few extra minutes of ultrasound. In the end, I got the all-clear, she said she almost canceled the ultrasound but wanted to be sure.

Here are a few things that did help me not be even more panicked: The only safety in being present in each moment. I kept repeating even in the waiting room, "in this very moment everything is still ok" Then to ground myself even more in the present moment I started describing out loud everything I saw in the waiting room. My mind couldn't be in two places as I was doing that. Moment by moment. Also deep in-breaths and long exhales.

I hope everyone reading this forum while waiting to go back in gets good news.

One question: I got the all-clear earlier today and was immensely relieved, but I don't feel like all is back to normal quite yet. The waiting trauma probably needs a few days to clear?

Michelle

Saturday 26th of November 2022

Thank you so much for this post! Your experience along with the comments from other women really helped me deal with callback anxiety.

My story is very similar to yours. Routine mammogram, no worries that day. I was shocked to see “Abnormal” and then “asymmetry with possible distortion”. It’s terrifying when you start reading online. I thought I had cancer for sure. Then my pcp messaged that the results were abnormal and I’d get a call to get more views. :(

What i didn’t realize is that there was a letter in my chart telling me to call them. Just a good idea to check that since it delayed my scheduling a bit. That said, they did get me in quickly.

I was so nervous going back in, and freaked out when they called me back in for even more views!! But it turns out the Dr. Was just being cautious. I can appreciate that, and she said that it was just superimposition of normal breast tissue. Whew! I had never been so relieved!! I’d been reading the comments section of this post while waiting for those results!

So thank you again for your post. The good news is better technology is catching more things, many of them benign. Remember that if you are in waiting hell. Tough to do, I know, but hopefully reassuring in some small way!!

One Frugal Girl

Saturday 26th of November 2022

Thank you for returning to tell your story. I'm glad that your results were all clear.

DianaE

Wednesday 23rd of November 2022

I had my annual screening mammogram recently. The experience wasn't the best. The technologist wasn't personable, and she seemed to rush through my mammogram. Even my husband, who waited for me in my dressing/waiting room, was shocked to see me return so quickly.

The next day the dreaded "call back" came, but quicker than any "call back" I had received in the past. I was so scared and thought it must be serious for them to call me so soon after my mammogram. The radiologist had found new nodularities in my left breast. "What did that mean?" , I wondered. So I began my online searches. The best I could determine was that the density had increased in certain areas. Why now? I'm 69 1/2 years old. I had to wait 12 more days before I could get an appointment for a spot compression and possible ultrasound. I asked God to give me peace, and I did pretty well until the day before and morning of my appointment. My hands kept shaking and knees felt weak from fear.

Once I arrived at the breast health center (with my husband for support), everyone was so upbeat and caring toward me. After 5 views of my left breast were taken, the technologist, who was very sweet, walked me back to my waiting/dressing room and said she would talk to the radiologist to determine if an ultrasound would be needed. In her opinion, it would be. Just hearing that felt like a gut punch. In my mind, it must be bad to warrant an ultrasound. Well, an ultrasound was indeed needed. The ultrasound technologist was kind and upbeat and tried to engage me in conversation. I was too scared to say much. She performed the ultrasound and then informed me that the radiologist on duty historically has 100% of "call back" patients have an ultrasound following a spot compression. That made me feel a little better. I think she insane needed to hear that. After she sent the images to the radiologist, she said the radiologist would be out shortly to perform the ultrasound again herself just to confirm that the images sent to her agreed with what she sees first-hand on the ultrasound screen in real time. What felt like an eternity resulted in a diagnosis of two small cysts in my breast. I will have my annual screening mammogram in a year.

I'm so grateful for good results after getting that dreaded "call back" and having to wait nearly 2 weeks.

One Frugal Girl

Saturday 26th of November 2022

Thank you for telling us your story. I'm glad you received good results.