Wednesday, October 3, 2018

That time I had an abnormal mammogram

The short version 

My first mammogram turned out to be anything but routine.  The diagnosis: benign.  Physical aftermath: one small scar.  Mental aftermath: sheesh I’m fine but...

So here is the story of two weeks and one day of my life this spring, and all of the things that I thought about and the questions that I had.  Not the least of which, if you are not a "very pleasant" person, how do they say that in your medical records?

The long version

The year I turned 40 my doctor asked me if I wanted a prescription for a mammogram.  I took the prescription but never filled it…it wasn’t so much that I was avoiding the mammogram as that I just never got around to figuring out where to go to get one.

This year I have a new doctor and at my first appointment we did the same dance.  But she didn’t hand me a piece of paper, she said, “I put the script in the system, they’ll call you.”   And a few weeks later, “they” did and set up an appointment at an imaging center very close to my work.  The visit was a breeze and I was in and out of there in 15 minutes.  Ha, I thought, mammograms are so easy, silly me for putting it off so long.

The next day my phone rang and the caller ID showed my doctors office.  I was puzzled why they were calling but picked it up.  It was my doctor.  Not someone from her office, my doctor.  “Hey, did they talk to you about this mammogram of yours yesterday?”

The news was that I have dense breast tissue, so they couldn’t be sure, but it looked like there was a mass.  The recommendation: go back for another mammogram and ultrasound.  My doctor’s take: don’t worry about it, but at the same time don’t ignore it.

I knew that it was unlikely I had cancer. I knew that it’s not uncommon to detect a mass in a mammogram, especially a first mammogram, and that the odds were overwhelming that it would turn out to be benign.  And yet a black cloud swooped over me and I couldn’t rationalize it away.

The follow up mammogram was even faster than the first mammogram, since they only had to scan one breast. The ultrasound technician described the procedure to me “it’s like on TV when they rub the stick on your belly and you see the baby.  Only this is less fun”.  She looked at the mammogram, and placed the wand on my breast.  We both watched the monitor.  At first there was nothing, and then a black spot came into view.  She zoomed in on the spot and captured several images.  Then she told me to wait while a doctor looked at the scans.

It didn’t take very long for the doctor to come back, maybe 15-20 minutes.  She told me that she couldn’t tell anything definite, but that it “warranted further investigation” and recommended a biopsy.  She gave me a pamphlet that described the procedure and a number to call.  After she talked to me about the procedure, she said, “well, you could also wait six months and have another mammogram but I don’t like that approach.  Then you’re just waiting with this hanging over your head.”

Before the day was over, I called and got the biopsy appointment set for the next week.  Next question, would I be able to go into work after the biopsy?  The pamphlet said that I would need to keep an ice pack on the site for two hours afterwards, but didn’t say anything about how I would feel.  I turned to the internet and read tales of pain, bruising, bleeding, and permanent injury.  I also saw tales of jumping right off that operating table and getting right back to it without missing a beat.  I needed someone IRL to give me the 411.

My IRL person was my boss’s boss, who worked crazy, tireless hours during her treatment.  I was expecting her to tell me that the worst part of a biopsy was not being able to work during the procedure.  But she didn’t.  She said that she experienced extreme nausea, nearly fainted, and had to be admitted for a few hours.

My preference honestly was to go to work.  My company doesn’t track PTO, but the clinic was close and it seemed like a waste to go through the commute and then not go into the office.  My husband works close by, so I had the option of having him get me if things went wrong.  And while there are many things that I will take a day off for, cancer isn’t one of them.  I just had to figure out how to pull off ice packs in my bra at the office.  Baggy clothes, maybe chop up a bunch of ice in the blender before hand and put it in zip lock baggies?

Well, of all the things I have spent my life pondering, the ice bags may have been the biggest waste of them all.  The doctor’s office called me the day before the biopsy to give me the rundown.  Including that in this day and age of modern medicine, no one is walking around with ice cubes in their bras.  They give you ice packs.  In answer to my question about going to work, the nurse told me “we send mothers home to take care of small children all the time, you won’t have any problems.”

On the day of my biopsy I set out in a sports bra, T shirt, and baggy cardigan.   I got checked in and met with the nurse practitioner.  She went over the possibilities with me: the lump could be nothing, it could be a less serious form of cancer, or it could be the Big C.   Once the biopsy results came in we would know what we were dealing with and would discuss treatment options from there.  She said that although my lump wasn’t large, the ultrasound had detected something solid inside.  Her other comment “This is why we don’t usually recommend mammograms for women under 40.  We don’t want to put them through this kind of worry.”

She examined me and said that she could feel the lump.  She led my fingers over the spot but I couldn’t feel it, so after a few tries we gave it up.  She asked me if I had any questions, and the biggest one that I had (short of knowing the results) was when I would be able to run again.  She was a runner herself, so she gave me every kind of answer that avoided a specific date “See how you’re feeling.  Maybe do the elliptical this weekend.  Wear two sports bras.”

She told me when to expect results.  It was Thursday, and she emphasized that it would take 3-5 business days, so it would be after the weekend.  She stressed that a longer wait didn’t mean a bad outcome.

It was time to move on to the biopsy in a small room with two ultrasound technicians, a training doctor, and a teaching doctor.  As they were coming in and out, each asked me what I was planning to do after this, and when I said go to work, they said that I would be very tired and should take the day off.

According to protocol, I had to tell them which breast was getting the biopsy, and the doctor then initialed my breast (her handwriting was very small, I was kind of disappointed).  They used the ultrasound to locate the lump, and then the doctors conferred on the best place to make the incision.

What do you look at when someone is going to make an incision and put a needle into your breast?  If you’re me, you watch the ultrasound monitor like it’s the hottest show on TV.

The first step was the local anesthetic, and the doctor told me that it might sting.  I could see the needle on the ultrasound, but I didn’t feel a thing.  They placed the needle to get the biopsy sample, and then used a second needle to place a titanium marker (to make it easier to locate the site if they need to go back).  It was fascinating to watch, and I felt nothing.  Afterwards they patched up the incision with a circular crisscross of steri strips.  Then it was off to get a final mammogram to make sure that the marker was in the right place.  Once that was done, the nurse placed a large band aid over the steri strips and gave me a kit of bandages and three ice packs.  They were very thin and cutlet shaped, the perfect shape to do the job and 100% undetectable to the human eye once in place.  I tucked one into my sports bra and popped a couple of Tylenol for preventative measure.   I hung out in the waiting room for about 10 minutes just to make sure that I felt OK and then headed out the door to work.

How was work that day?  Well, it was fine but it wasn’t my best.  My cardigan had pockets, so it was easy to discretely make trips back and forth to the freezer to change out the ice packs as they became warm.  But dear lord, I was so tired.  By noon I was falling asleep at my desk, and took a few breaks to walk around outside and wake up.  And I was SO COLD.  And yes, it really took me until later that evening to figure out that um, I had an icepack in my bra, of course I was cold.

That night I hit the couch.  I wasn’t in pain at all, but I was aware that something had happened to the left side of my chest and that I couldn’t put any weight on it.  When I was getting ready for bed, I took the sports bra off for a moment and realized that something in the universe was Terribly Wrong and quickly put it back on again.

Friday morning dawned and I felt pretty good.  I took my sports bra off and the universe was just fine with that.  I wore a regular bra to work, though I also took the sports bra and ice packs just in case.

Physically I was good, mentally not so much.  I have always thought of myself as a healthy person.  That winter I was in great physical shape, making headway on losing the extra pounds I’ve been carrying and not even having so much as a cold.  The abnormal mammogram threw everything off.   Why now, just six months after I had gotten married?  Was it my crappy diet?  Oral contraceptives?  My god, was it my non-natural deodorant?  I pictured how my life would be with an illness (I mean surely it was early stage and would be very treatable?) and the impact on my stepsons.

Roughly speaking, between mammograms #1 and #2, I think I had an inkling that it wouldn’t be over at mammogram #2, but normal life went on and I went for long periods of time without thinking about it.  My dark factor went up a little in the week before the biopsy, and now that the biopsy was over, I didn’t have a “next step” to go to until the results came back.  I couldn’t logic my way out of it, I was in a bad place.

The afternoon wore on.  My coworkers chatted about weekend plans and I realized that it was going to be a very long weekend and not a good one.

My cell phone rang. Normally you can’t pay me to pick up a call from an unknown number, but my spidey sense told me to answer.  It was the nurse practitioner, the same person who had told me that there was no way that results would be ready before the weekend.

“I just wanted to tell you that it’s benign.  A second doctor will review the results next week to make sure that we got the right spot, but we did.  It’s nothing.  You’re fine.”

Just like that I was out of jail.

The recovery was fast.  I never used the ice packs after the first day.  I returned to running on Sunday, wearing my most supportive sports bra, and had no problems.  The steri strips started to peel during my post workout shower and I took them off for good at that point and wore a band aid for a few more days.

I bruised around the edge of the steri strips (the bruising started right after the procedure, it wasn't from running). If you can imagine, it looked like I had a bulls eye on the side of my breast: a big ol’ circle of bruising with a dot in the center at the incision site.  It took a month for the bruising to go away.  Six months later, the incision is just a tiny dot.

Final random thoughts

Stuff that messed with my head: everything on the internet. Getting a letter from the hospital after every visit (I later learned that it’s state law that the hospital has to send a follow up letter after every visit to women with dense breast tissue).  Seeing the lump on the ultrasound for the first time.  Seeing a very young woman at the clinic the day that I got the biopsy.

On telling people: at the time, I only told my husband, my boss, and my boss’s boss.  That made it easy to get the three of them up to speed once I had results.  I’m not much for keeping secrets, but when the outcome is uncertain, it’s just easier to limit the audience.

On work: A few years ago, I was in a terrible work situation.  The company was trying to fire my boss and he was trying to use us all as human shields.  If I had been in that work situation at the time of the biopsy, I would just have told work that I had “a doctor’s appointment” or was “having outpatient surgery”.  Tangent: for so many reasons, if you’re in a work situation like this, for god’s sake do what I did and look for another job.

If your work requires alertness and attention at all times, you’re probably better off staying home the day of your biopsy.  I'm an accountant, so I operate spreadsheets, not forklifts.  If you want to get your mind off your situation, going into the office definitely helps.  And if your company tracks PTO to the minute, that’s also a valid reason to go into work (though please see above tangent about finding another job…)  If you don't have access to a freezer at work, that's another consideration, since you won't have a way to refreeze your ice packs.

Something I feel funny talking about but am going to talk about anyway: my insurance covers 100% of the cost of an annual screening mammogram, and I think that’s pretty typical.  Once you get into follow up mammograms and biopsies,  you’re going to be forking out some cash.  Never had I ever met an insurance deductible before this year, and it took quite a while for all of the bills to come in.

I have no confidence in my ability to detect a lump: right after the biopsy, I felt a lump in the place where the nurse practitioner said my lump was as clear as day.  I’ve never been able to feel it since.  Honestly, unless the lump was huge, I’d never be able to find it.

Mental stuff: It’s hard for me to explain the mental impact, but it was there and it was real.  Even after the benign diagnosis, I felt down for a while.  Is it because I had a wakeup call that I’m not invincible?  That life is precious and can turn on a dime?  Something like that.

I delayed my annual physical by a good three months after the mammogram.  The internet tells me that it’s normal for patients to avoid medical treatment after a false positive result.  Going forward, I’m going to let myself be a month or two “late” for screenings, but no more than that.  One study I saw found that women who have had false positives waited an average of three years to get their next mammogram, which is fine if you end up not getting breast cancer, but if you do then it’s going to be detected later and you’re going to have a worse outcome.  I say bring on the false positives.  Because it's so much better than the alternative.