In the Awful Waiting Period Between a BIRADS 4 Mammogram and a Biopsy
Hi folks…
As the title suggests, I'm in the dreaded limbo-land between tests. I have dense breasts, and this was not my first time being called back for a follow-up mammogram. It was, however, the first time I was called back for something other than the density mucking up the images.
This time, it was for tightly grouped fine pleomorphic microcalcifications. Like sand, the radiologist said.
Anyway. I am not looking to worry anyone in my life (other than my husband) about this until I know there's something to truly be concerned about, but I also know that I will go insane if I don't write and/or talk about all of these thoughts.
Mostly, I'm attempting to accept that I'm simultaneously feeling scared and silly for feeling scared, because until I know for certain, I feel like I shouldn't be. And yet…it feels impossible not to be.
I am hoping someone will relate. Also, if anyone wants to talk to me about their biopsy experiences or if you've had a similar mammo result, I'd love to hear…
(The rest is just a bit of journaling)
5/9
As an author, I’ve made a strange little niche of writing about abstract moments of sadness or fears - of deaths, or diseases, or things that happen to families, but have never happened to my own. Stories that touch on the simple things, the tangible ones that people can relate to - the dish soap bubbles catching sunlight in the sink on the counter, the dryer's sound when it’s finished its cycle. The stiff-softness of the afghan on the back of the couch at your grandmother’s house, the scent of dinner cooking when you walk through the door. How holding a hand slows your heart. How human contact makes everything feel safer.
How people cling to these simple things when their world is shaken like a snow globe.
Now, here I am, forty-five, in the middle of my watery, iridescent blizzard.
I’m holding back tears in the shower on an otherwise mundane Thursday morning, and then not.
I let the fear in. I feel it, breathe through it, let the tears slide down along with the water on my skin.
And then compose myself again, reminding myself that it’s only that, only fear.
And it’s all probably for nothing. A ghost, a shadow. A small cluster that looks like a sprinkle of sparkles on a screen that looks like stardust.
(And aren’t we all made of stars after all?)
5/10
It’s not that I’ve been googling down rabbit holes, which I have. Or, that I have also looked up statistics about my particular diagnostic discovery and found a 50-67%-92% chance of malignancy, depending on the source.
Those statistics actually comfort me. I’ve always been an optimist.
No, the stirring feeling in my gut comes from something different.
It’s been a collection of small reactions.
It’s been because the radiologist repeatedly said, “I love to be proven wrong,” when he was explaining why he’s sending me for a biopsy. It’s how the technician rushed to have me flip over a piece of paper and scribble down the best contact number to reach me so that they could set up my appointment as soon as possible.
It’s how they both stressed, “Please answer your phone,” as I was leaving.
It’s how they called within two hours of my leaving the radiology appointment. The woman on the line told me her name and then went on to explain, in great detail, so many things about both the procedure and the appointments that I would be going to, and did I have a good sports bra for after the biopsy, and a ride home, and this was her direct line should I have any questions - she was now my nurse on-call. She is my person for this journey; she's the one with all my connections organized between my primary care, imaging, surgeon, and oncologist.
“Save my number.”
It’s not even that the oncologist found a different area of concern or that she ordered an additional ultrasound on my other breast for the same day of the biopsy. No.
It’s how she asked, “Please don’t look at the biopsy results until I can call you to set up a time to talk about them.”
I have been calm and level through all of this, just nodding and accepting that this is simply something I’m walking through in this moment. This is a space in time where I am, and I am still breathing.
I have been showing no fear, I have been showing no signs of anxiety or concern to anyone except the shower walls.
It’s how an oncologist, a woman I’ve never met, stepped forward and sweetly hugged me as I stood up to leave.
Comments
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Very beautifully expressed @mellabee22! I’m so sorry you are in this most surreal place that we are all too familiar with.
Your words evoke memories of my own experience, almost two years ago. I know we can’t give ourselves an accurate diagnosis based on our radiologist’s body language or what he/she says, but I too found myself pondering her seemingly strange behavior that day, both hers and the ultrasound technician’s (I thought she was about to tell me someone died, she was so somber!) … in my case it turned out to actually be malignant. I was Birads 5.
For what it’s worth, quite a few individuals have posted on here their ultrasound report and it has sounded so dire, clearly malignant I thought, yet it turns out to be benign! Please know, if it ends up being anything, you are not alone! There is a tremendous amount of support here! I hope you get answers soon enough.
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Hi @mellabee22,
We're just checking back in to see if you've gotten any answers. We're thinking of you!
—The Mods
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Thank you for checking in!
I am going in tomorrow morning for my biopsy and the ultrasound that they added on. I have been trying to keep myself distracted for the past week, but now, as the hours are ticking down, the nerves are creeping back in. I should know more by the end of the week, fingers crossed!1 -
@mellabee22 - Thanks for the update. We’ll be thinking of you tomorrow and crossing fingers for reassuring results.
The Mods
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Hang in there @mellabee22!!
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I am on a similar journey. I have been very calm and not worried, but seeking answers or some guidance on this forum. I was given a BIRAD5. Most of what I have read seems it’s a slim chance I won’t be on the benign side but still hoping for that 3-5% chance. I hope your biopsies come back quickly so you have your answers.
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Hi @jprimar18, I’m sorry that you have the stress of waiting for a biopsy but glad you are staying calm. I recall someone who posted here with a BIRADS5 mammogram but had a benign lesion. I hope you are also one of the lucky 5% but if not this is a good place for information and support. All the best.
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I just got the "MyChart" email ping in my inbox! I tried to resist looking at it, knowing that none of my doctors have likely even looked at it yet…But I couldn't wait.
FOCAL ATYPICAL LOBULAR HYPERPLASIA
FLAT EPITHELIAL ATYPIA WITH ASSOCIATED COARSE CALCIFICATIONS
I also found out I'm ER+ (?)
I am so relieved to have some idea, but I am still looking forward to talking to my doctor. I know it's not cancer (such a relief), but I also think, based on my limited research, that it puts me at an increased risk now.
Thank you for being a safe space to vent and relate to your experiences.
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Hi @mellabee22. Thanks for sharing your results! I’m not really familiar with either of those, aside from a quick google search, but if it’s all precancerous and not cancer yet, that’s fantastic!! I’m curious what next steps your doctor will recommend. Please do keep us posted if you don’t mind.
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It does look like ALH is a type of precancer (so thankful for early detection), so I think it'll just be much more monitoring. But I will certainly update you after I learn more myself! :)
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Just wanted to touch back in and update now that I've finally had my meeting with the oncologist and the surgeon, especially since it seems like ALH and FEA aren't super well-understood diagnoses here.
FEA on its own isn't as high of a concern, but when found in conjunction with either ALH or ADH, it is. (And either ADH or ALH alone is considered high risk.)
The doctor (surgeon) I met with yesterday was fantastic (also a hugger, like her partner, the oncologist 😊), and she explained everything in great detail. She suggested aggressive surveillance over surgery for my risk, which means high contrast MRIs every six months, starting in two months (after my biopsy has time to heal), and then also a follow-up left-mammo in six months.
She also discussed going on Tamoxifen, because I'm ER+, as a preventative action, but agreed with me that at 45 I'm too young and that estrogen is still something that I need for my bones and perimenopause…but that we may reconsider if anything starts to come up in the surveillance over the next couple of years.
So…that's all. I just wanted to follow up and let anyone who might've been wondering what it's like to be in the high-risk category know what the journey is like, now that I've seen a little bit behind the curtain (after my month of miserable waiting and breath-holding).
I'm feeling like I'm in excellent hands, and I'm grateful for this space for if, or when, anything else might come up. Thank you! :)1 -
@mellabee22, Great news! Thanks for getting back to us. It sounds like surveillance from a team you trust is a good option in your situation. I hope you remain in the clear.
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