Mammogram callbacks like mine happen year round, not just in October

Unless you live in a cave, you know that October is Breast Cancer Awareness Month. You can’t walk more than a couple of blocks or click more than twice without bumping into a pink ribbon. Even the shopping bag I got after buying my son new sneakers the other day was adorned with pretty pink borders and yes, that ribbon.

pink ribbon

Then November comes and how quickly those pink ribbons are replaced with Christmas lights and Starbucks red cups.

But here’s the thing. October isn’t the only month in which those of us in the over 40 crowd get our mammograms. We get them in January, February, March and well, you get the idea.

We even get them in September, like I did.

And some of us even get called back.

Of course, the worry associated with a mammogram callback is not confined to October either.

Five days after I had my mammogram I got a call from the coordinator at the imaging center. “You stated at your exam you had a prior mammogram. The radiologist would like to look at it.” I asked why and got the standard I-can’t-tell-you-anything-you-need-to-talk-to-your-doctor response.

I gave her the number to the hospital in Connecticut where I had the baseline mammogram when I was 35, hung up, and wasted no time calling my doctor. I talked to the nurse who told me, yes they found some asymmetry in the left breast so they wanted to look at the old images to see if it was there before.

I suppose I wasn’t completely surprised. My left side has always been a bit bigger. In high school, we called it being lopsided and it meant maybe you got picked on. Now in our 40s, they call it asymmetry and it means a mammogram callback and thoughts on the dark side. Thoughts like, they found asymmetry and some cancers can present that way. Thoughts like, well, it’s been 5 years since that first mammogram so whatever cancer is there has been lurking for years and has already spread uncontrollably.

Not wanting to wait, I asked the nurse if I was better off getting more images now. She told me, no, it’s better to look at the old ones. While skeptical, I decided to go along with the plan.

Well, guess what? After comparing new to old they wanted me to come back anyway for more images.

Apparently mammogram callbacks are somewhat common. I read that, “According to the American Cancer Society, about 10% of women who have a mammogram will be called back for more tests. But only 8-10% of those women will need a biopsy and 80% of those biopsies turn out be benign.” Still, those statistics didn’t stop my blood pressure from shooting sky high when I got the call. I didn’t focus on the 90 to 92% percent of callbacks that do not require a biopsy and the request for additional images is just that, additional images.

I also didn’t think about the myriad reasons that women, especially premenopausal women in their 40s like me could be called back, most of which have nothing to do with breast cancer. Things my technician mentioned, like overlapping tissue, dense breast tissue, and cysts. Then there are other factors that influence mammogram callbacks that have nothing to do with the patient, things like differences in radiologist experience and facilities. If it’s the first one, that fact alone can work against you.

All of these factors add up to a pretty high risk of a mammogram callback. According to this longitudinal study in which the same group of women were followed for 10 years, 23.8% of the women had at least one false positive result on a mammogram and the estimated cumulative risk of a false positive over 10 years was 49.1%.

Even armed with statistics and reason which were largely on my side, that day I sat frozen in an already cold diagnostic imaging waiting area dressed in a hospital kimono, pink of course. A technician wearing, you guessed it, pink scrubs called me back for two more extremely uncomfortable shots of the flagged area on my left breast. Those two Advil I popped before leaving did nothing. Then it was back to the waiting room with all the other nervous women and the “House Hunters” marathon on HGTV. I was called back again because the radiologist wanted another view. That third one wasn’t painful at all.

Apparently that area was pretty stubborn because the radiologist determined I needed an ultrasound. Another technician in pink scrubs whisked me away into another room and positioned me on a wedge while lying down. At least it didn’t hurt. I had to stay prepped and positioned while the technician consulted with the radiologist to see if she needed more pictures.

She came right back into the room with a piece of paper in her hand with my results. I was fine, the ultrasound confirmed the area was some dense tissue and nothing to worry about. They will look at it again in six months.

While I got to dance out of the women’s imaging suite, all of that was seriously scary. Still, I will say as paralyzing as fear can be, mammogram callback fear was not going to stop me from making that appointment. I think it is important to get that screening mammogram done for a couple of reasons. First, I took an important step to catch anything early and to be on top of whatever was found. Be scared, take a box of tissues with you if you must, but go, get it done. Being followed closely provides comfort as well.

The second reason has to do with the recent change to the mammogram guidelines set forth by the American Cancer Society changing the age of the first screening mammogram to 45 from 40 for women of average risk. I would say if you are like me and fall into the 40 to 45 age range, get the mammogram and clinical breast exam – which is being done away with altogether under the new guidelines – before your insurance company changes its policy on reimbursement for breast exams to fall in line with the new recommendation. I would rather be over-examined and have a false positive than be under-examined and have something potentially deadly slip through the cracks or in this case, milk ducts.

Still, I wish I did a couple of things differently. I wish I had the foresight to have the files from my original baseline mammogram in hand when I went to my screening mammogram. I got the letter, saying hooray, no evidence of cancer, filed it away and that was that. Sure, when I found out we were moving, one priority of mine was to get the kids’ birth certificates to take on the plane with me. Why didn’t I do the same with my baseline mammogram? If you don’t have it with you, it adds time to the process, more time to worry.

Also speaking of lessons learned, do not assume your doctor will call you with results, either good or bad. No news does not necessarily mean good news. Follow up, follow up and follow up some more.

In March when I have to go back for my follow-up mammogram, I will be just as worried as I was for my recent mammogram callback, even though again, statistics and rationality suggest I should feel anything but anxiety. But I will go. Bring it on.

I am certainly not the first ChicagoNow blogger to have a mammogram callback scare and based on the statistics it looks like I won’t be the last. I encourage you to read Little Merry Sunshine’s excellent series detailing her breast cancer scare last year when she went in for a biopsy. Click here to find out what happened. And I totally agree with her, the way out of the diagnostic imaging changing room should have led to a wine bar.

Note, I am not a doctor or medical expert and nothing in here should be construed as medical advice. This is my opinion and experience based on my mammogram callback. Any questions should be directed to your doctor.

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