probably not cancer

daymammoSo while I haven’t mentioned it much of anywhere, or to too many people, I’ve spent the past six months in various states of anxiety over my last mammogram. To give away the end of the story, everything is fine. The problem is, everything was always fine, and those six months of panic could have been avoided by a better system.

I’ve had mammograms before, so this wasn’t my first trip to the rodeo — but it was my first time having one here on Long Island. Back home in Buffalo, I used a particular lab group that had a different way of doing things. We’ll get back to that later. Here, I made my appointment, showed up, put various bits of me in a machine to be squeezed (while it’s not something I’d do for kicks, I don’t find it all that painful), and that’s when the technician said, “Oh, looks like you’ve got a cyst.”

“A cyst?!” I asked, instantly freaked out.

“Or a nodule or lump or some kind,” the tech replied, as if we were talking about a weather system moving in later that day, or a sale at Target. She didn’t elaborate, and I was ushered into the ultrasound room. A different technician directed me to lie on the table. She was taciturn and didn’t respond to my questions. I asked what this all meant, and she told me to hold still and not talk. At this point I started crying, silently as ordered. When she finished she left the room, came back, and said I should get dressed and go home. I asked, again, what was going on. She said my doctor would contact me. I asked to see the radiologist. She said he wasn’t available.

I went out to my car and cried out loud this time. I called my husband at work — something I *NEVER* do in tax season — and talked until I was calm enough to drive home. This was a Friday afternoon, of course. There was no reaching my gyno all weekend. By the time I finally spoke to her on Monday, it wasn’t really much help. She said she hadn’t had a chance to look at my report but had it in front of her now. She rattled off a lot of medical terms that made no sense to me and did say she wasn’t worried so far. I should go back for my recheck in six months and then if there was anything I’d be referred to an oncologist (which is one of the top ten most frightening words in the English language, imho).

And that was it. That’s all the information I got. For six months all I had to hang my ramped-up worried, concerns, fears and panic on was that and a form letter from the lab that said, “We found something abnormal on your last mammogram that we believe is probably not cancer.” There’s something not very reassuring about that phrase. I mean, of course it’s better than hearing “it probably IS cancer”, but it’s not exactly the kind of thing to make you sleep well at night either.  “You’re probably not going to have a fatal accident on the way home tonight.” “You probably won’t fail your final exam.” “The guy who just moved in next door probably isn’t a serial killer.” It’s technically positive, but it whiffs a bit too much of the possibility of the negative.

For six months I worried, I fretted, I told myself it would be okay, I told myself it wouldn’t. I clenched my jaw so hard I gave myself shooting headaches. Dave was there when I was up and when I was down, of course, always, reassuring me everything would be okay. And of course it probably would be, but I still worried. I couldn’t help it. And that worry and anxiety colored everything I did and everything we planned.

Last Tuesday, I went back for my recheck. I started off the day doing relatively alright, but as the morning wore on, I got scared. I spent a half-hour in the waiting room with a locked jaw, focusing on the boring repetitive news reports on the TV, afraid I would throw up if I lost focus for even a second. Finally, they called me in. I apologized to the technician — a different one than last time — in advance, and said I was so anxious I was shaking a little, and would try my best to hold still. She asked why I was so concerned. I told her about the cyst or nodule they’d seen on my last scan, and how worried I was. She frowned. “You didn’t have a cyst, or anything,” she said.

I’m going to make what’s already a long story short and skip past the next 45 minutes, where we did the recheck and I put my foot down and insisted on seeing the radiologist this time. He was actually very nice and did, in fact, bring me in to look at all of my scans, went over everything with me, and answered all my questions. I’m fine. I was always fine. I don’t have a cyst or a nodule or a lump or anything. There was a spot on my mammogram six months ago, so they checked it with an ultrasound. The ultrasound showed there was nothing there. This happens because of something called overlapping tissue. In blunt layman’s terms, when they squish your breast in the machine, sometimes you’ve got a flap of skin or some tissue or something that makes a spot on the mammo. They do the ultrasound to see if there’s anything there. When there’s nothing, they send you home. You have to (and by have to, I mean by law they are required to tell you you should) come back in 6 months  for a recheck, just to make sure they see the same thing.

The nice radiologist told me that yes, he saw the exact same nothing this time. I made sure I understood him correctly and asked the same question every way I could think of. He didn’t waver. But I also asked a lot of apparently unanswerable questions about why this happened this way. Why did the first technician use a word like “cyst” or “lump” to me at all? Why didn’t the ultrasound technician tell me that the radiologist said they’d found nothing? Why didn’t the radiologist himself just explain this all to me six months ago? And this is where I’m giving Buffalo one, Long Island zero, because at the lab I went to in Buffalo, you ALWAYS spoke to the radiologist before you left — unless you didn’t want to. So the person reading and analyzing the scan was the one who went over it with you. The best we could make out what happened here six months ago was that someone wrote a report somewhat badly and then sent it to my gynecologist, who clearly didn’t understand what she was reading and therefore conveyed the information to me very badly, if not incorrectly. I was scared and terrified and confused unnecessarily. The system let me down. Mind you, I’m VERY grateful for my results. I’m lucky, and aware of that. But I’m still downright pissed about the negative effect this bad process had on my life for half a year.

To maybe turn that negative into a positive, thuogh, I’d like to share two articles I found that every woman should read — the first is a PDF about “The Dreaded Callback“, and the second is titled “Abnormal Mammograms Often Terrify Women Unnecessarily“. Neither of these articles minimizes the importance of regular breast cancer screening — it’s incredibly important. But there’s often no reason for it to be as frightening a process as it is. I wish I’d read them before all this happened, but at least from now on, I’ll be informed, and possibly someone else reading this will be too.