Life Lessons

What they don’t tell you before your first mammogram

In January I hit a milestone birthday, a new decade, a new age category for races. I turned forty. Along with turning forty comes the responsibility of getting your first mammogram. Truth be told I’m diligent about going to the dentist and to the gynecologist. When it comes to going to the eye doctor I generally go when I know my prescription needs to be adjusted. Don’t even get me started about routine bloodwork and physicals. I know, I know I need to do better. But this year I got my act together. I picked one day and did it all. Mammogram, physical, dermatologist. Check, check, check. And I had gotten the bloodwork done ahead of time. I was feeling quite proud of myself for getting everything done. I know you don’t rewarded for just doing what you are supposed to do, but I got it done.

So let’s talk a little about the mammogram experience. So maybe it’s just me but no one really adequately prepares you for this experience. I went to Advance Radiology because that’s where I went for all my ultrasounds with the boys and felt comfortable there. The very kind woman brought me back and clearly even with the mask on I had a deer in headlights look. At which time she said, “ah, it’s your first time.” Well, yes, yes it is and I’m basically terrified. She kind explained what was going to happen. That said, there’s actually no way to adequately prepare you for the squishing that occurs to your breast, but I digress. She had the presence of mind to say- “don’t worry if you get a call back letter; it happens all the time.” She said it. I heard it. I knew it was a possibility. But literally when the letter arrived I thought the worst. I spend so much time being super positive and thinking everything happens for a reason, but my mind when negative and then I couldn’t bring it back. I immediately scheduled the follow up mammogram and ultrasound. All the while, my brain was wondering how this could be possible?

I’d like to take a moment to talk about the letter. Now clearly, this was a letter written by a lawyer in anticipation of avoiding litigation. Somewhere along the line with medicine we lost sight of the human component. That a human being- ME or any number of other women whom I’m sure have received this or a similar letter are receiving the letter. The beginning is fairly benign (pun intended, only because I can laugh about it now).

Your breast imagine exam shows a finding that requires further imaging evaluation. While such findings are benign (not cancer), additional mammographic views and/or ultrasound is necessary to determine this. Ok, I get this part. They are trying to tell me that more views are necessary, could be benign, which leads to the possibility that things might not be benign. But then, there’s a huge section of By Maryland Law, we are required to provide you with the following information. Friends, there are then three long paragraphs of what they are required to tell me by law. Seriously?? Long and short of paragraph one: my breast tissue is dense. Oh and the determination of density is subjective and may vary from year to year. Paragraph two in summary: density is fairly common, BUT can be associated with an associated risk of cancer. Well, that cuts both ways. Density is common, but it could lead to cancer. What am I supposed to do with that information??? Paragraph three: we tell you this so you can figure out what to do with your doctor.

Like I said, as a lawyer, this was written with a potential lawsuit in mind and not with a human touch…at all. Keep this in the back of your mind, we will circle back to this when we get to the meeting with the doctor part of this saga shortly.k

I go for my follow up appointment at Advanced Radiology. If I was a deer in headlights the first time around, I probably looked like Bambi after seeing their mother get killed this time. First things first, they want to know where my referral is for the appointment. Hello, I’m here because you said I needed to come for a follow up. PS that lawyer written letter referenced above never made mention of getting a referral otherwise I certainly would have done so. So, now I have to wait for them to get my doctor’s office on the phone to get the requisite referral. Giving me plenty of time to worry. I thought I was fine though, had pulled myself together. But I got back into the room for the mammogram and the slow trickle of tears started. Again the technician was trying to be kind and explain that having a call back was “normal” and I likely wouldn’t even need the ultrasound too that they would probably get everything they needed from the mammogram. Alas, that was not the case and I needed the ultrasound too. Which of course triggers to me that something was clearly still showing up as wrong on the mammogram. Time for the ultrasound. Now, I’ve had an ultrasound before, but never have I had an ultrasound with so much pressure. Not only was it uncomfortable but I was also super worried so the tears continued. I wasn’t worried for myself per se, I was so worried about something being wrong and not being here for the boys. That’s what I couldn’t get out of my mind. The technician completed the ultrasound and said she would go speak to the radiologist and return. She came back and said “we will see you back in six months.” But why? If everything is OK why do I need to come back in six months. So again, I’m figuring something is still not quite right.

I reach out to my gynecologist who I expect to say, this is normal and no big deal. This is not the case. She calls me back. I missed the call because I was teaching and got a long message. The take aways being that she never treats anything like it’s benign and I should follow up with a breast specialist. So if I had finally gotten myself collected, that all fell apart and I went into full on panic mode.

Let’s talk a little bit about the second letter from Advanced Radiology: Your breast imaging exam performed on 5/11/2021 shows a finding we believe is probably benign (probably not cancer) but needs follow up. We would like you to return in 6 months to confirm the finding has not changed. Probably benign? What in the world does that mean. It means they don’t know with certainty otherwise it wouldn’t be probably. So again, maybe we shouldn’t use language in letters that can lead to speculation and concern. Maybe we should write letters like these as if a loved one was receiving it in the mail.

I scheduled an appointment with Dr. Sara Fogarty at GBMC Hospital. I had around two weeks to get in to see her. Two more weeks of pretending I wasn’t worried about it when in fact I was really worried about it. More worried about making sure I’m here for my children and husband. More confused as to how this could all be possible. On July 16 I had my appointment with Dr. Fogarty. I was convinced the appointment would lead to more follow up tests and worry. I couldn’t have been more wrong. Dr. Fogarty came in and couldn’t have been a nicer human being. The first thing she said “I’m not worried about these findings at all.” Insert deep breath. It was like she read my mind. She instantly knew that I had been completely worried about this for nearly a month. She took great time to read through the results with me, to show me on the screen the findings, to explain that I’m 40 years old and that’s why my breast tissue is dense as it should be. That the spot in question had no indicia of being malignant. I cannot sufficiently describe how kind, patient and nice Dr. Fogarty was to me. I felt completely comfortable after talking to her and realized that the unknown is what sparks so much worry. But you know what else? We can do better. The medical field can treat people like human beings rather than potential litigants in a lawsuit sending formal letters. And was quick to tell Dr. Fogarty this as well. She didn’t disagree. She was kind and receptive. And went one step further to explain what would happen next. For that six month follow up I would come to her office. There’s an Advanced Radiology there as well. I’ll get my mammogram/ultrasound and then I’ll see one of the people on her team to review the findings before I leave. No need to spend weeks worrying. My questions will be answered immediately. This is how it should be. I cannot even imagine the number of women like me who have spent hours worrying because of vaguely written letters designed to cover the rear end of Advanced Radiology. Let’s do better, let’s explain clearly, let’s return the human touch to medicine!