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Mammogram Call Back Stories: Real Stories to Relieve Anxiety

Mammogram Call Back Stories: Real Stories to Relieve Anxiety

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 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.

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.

Rachel

Sunday 7th of August 2022

I had my annual mammogram last Monday and got a letter in the mail almost a week later saying I had “asymmetrical associated architectural distortion” in the middle depth of my left breast. I already have anxiety, so I immediately started crying. In the 5 years since getting annual mammograms I’ve never had a call back. I have fibrocystic breasts so wondering if that would play into it? My doctor is calling first thing Monday morning (because of course I find this out on a Saturday) to get my diagnostic mammo set up. Praying I don’t have to wait long. Every time I look at my 13 year old I start to tear up. Everything online makes it seem like AD is absolutely cancer so your story gave me hope!!!!!

One Frugal Girl

Monday 8th of August 2022

@Rachel, I hope that your callback mammogram is all clear! You are not alone. As you see in the comments many of us have been in your shoes.

Melody

Saturday 16th of July 2022

I’m a scared and nervous wreck, as I write this my kids are playing in the other room and I can’t stop crying. I had a mammogram and received the dreaded callback. They found areas of focal asymmetry in both breasts, and architectural distortion in one of them. I searched online, and I’m sure I am going to receive the worst news. Nothing I find points toward anything positive.

DawnK

Wednesday 6th of July 2022

First of all just wanted to say a quick thank you to all who organized and contributed to this amazing page!! I go to a place an hour away to get my 3D mammograms even though we have one nearby, because they are pretty good to me there and honestly after seeing how long some of you have had to wait for follow up tests or results I feel very blessed to have them!

Several years ago I had completed a mammogram and got asked to step back in and get an ultrasound. This was the first time I'd had this happen and was very alarming of course. Unfortunately at that time there was a rather inexperienced ultrasound tech who proceeded to grab the Dr and in a panicked voice, point out all of the things she was seeing in my breasts that had her concerned. The Dr. quietly took the information and left the room to compare with other mammograms of mine(while I lay there completely panicking on the inside). Fortunately he came back and let me know that I had a lot of inflammation around my lymph nodes. I also found out at this time that I have very dense breasts as some of you do and need a 3-D mammogram each time.

Last week I had my mammogram and went on with things. I got back from the holiday weekend and got a call while I was working yesterday from the clinic letting me know that they found things in both of my breasts that they need to look into and they got me scheduled today for the ultrasound. Which is great because less time to get myself worked up but don't you worry...I'm a pro at it...I can find plenty of minutes to focus on the worst case scenario in that 24 hours! I have quite a bit of pain consistently in my left breast that I've just kind of learned to live with. I think we all know that when something like this comes up that pain becomes front and center!

I read through all of your stories and in between praying and worrying(and halfway focusing on the things I actually needed to be focused on), I promised myself I'd pay it forward if things went ok and leave a story for whoever may need it.

They took measurements of several spots in my breasts, then had me stay in my gown until the Dr could come in and talk to me. I waited around 10-15 min(which I could have sworn felt more like 45 to me). She came in and was so happy to be able to let me know I won't need anything further! I have several cysts showing up. I'll need to just pay attention and if I notice changes go back in, but if not, I don't need to come back until next years mammogram! (Whew!)

I have a feeling this will pop up for me again with these girls of mine, but very glad to be able to share another good outcome!! :-)

Wishing you all the best!

One Frugal Girl

Monday 8th of August 2022

@DawnK, Thank you for returning to share the good news! Detailed stories like the one you left help women who stumble across this post! They provide a glimmer of hope at an anxiety ridden time. So thank you!

Anu

Wednesday 6th of July 2022

I would like to share my positive story too! I have dense breasts and my screening mammogram showed ‘asymmetry with architectural distortion’! I too scoured the internet for positive stories, but was only met with dismal statistics! EXCEPT FOR YOUR BLOG! I thought my life is going to end, but your blog showed me a ray of hope. I am writing from the parking lot of the hospital where I had my call back mammogram and ultrasound. I got the ‘all clear’! They didn’t see any anomaly, but do want to repeat an ultrasound and mammogram in 6 months out of caution. Thank you so much for sharing your positive stories! It is extremely helpful! Wishing everyone the very best!

One Frugal Girl

Monday 8th of August 2022

@Anu, I love that you decided to return to comment before you even returned home! Thank you for commenting and giving other women hope that everything will be okay.

Susan S.

Wednesday 15th of June 2022

I literally dreamt all week about being able to come to this amazing article to share both my support and experience in the hopes that it helps others' anxiety as they await their dreaded mammo callback. I had a birad-0 in my latest yearly mammogram that prompted my callback and my wait was 8 days. I was literally dead womam walking. All I could do was think of every worst case experience and I actually was visuallizing myself of life with the worst results (do not do this please).

So for reference, I'm 53 and I've done a yearly mammo every year since 40. Somewhere in my 40s the hospital switched to 3D mammo. This added to my anxiety as I believed that callbacks were more rare with 3D, this is not entirely true according to the techs I met with today.

I went in and had another mammo, an ultrasound, and then a more focused mammo (huge ouch) which made me even more convinced this was not going to end well. BUT IT DID...I got an ALL CLEAR and I don't need to return until next yearly appt. The radiologist (I think they're all amazing in their delivery) explained how boobs evolve each year for many reasons. Turns out I had new tissue that was not apparent on past mammos but they obviously prefer to be uber diligent.

For any woman reading this and going through the wait...be kind and gentle with yourself, drink a little extra red wine (if that's your thing), take some extra naps, and lean on friends. Once I reached out to friends I learned the dreaded callback is actually pretty damn common. Hang in there and do not skip the yearly mammograms, take control of your health because if you don't get the results you hoped, you'll know it was caught early. Best of luck ladies and thank you everyone for sharing these experiences, I needed this. (and huge thank you to the author). -Susan

One Frugal Girl

Monday 8th of August 2022

@Susan S., Thank you for commenting. Each new story helps another woman feel more at ease! I'm so glad you received the all clear!