WARNING: The next few posts are going to contain a lot of medical and other technical stuff, some of which I may not explain exactly right — I’m a lawyer, not a doctor. Also, I don’t think there’s anything particularly gross in here, but if you’re super squeamish, you might not want to read it. Finally, given that I have breast cancer, these posts are naturally going to talk quite a bit about my breasts. If our relationship is such that talking about my boobs makes you uncomfortable, you might decide to skip this part of the blog as well.
Now that that’s out of the way – quite a few people have texted or called me to ask me questions about my diagnosis and treatment, and I know that I personally am interested to hear other people’s stories, so I thought I’d share it all in one place, especially because I know some people are worried that they may be prying and so don’t want to ask. I figured it’s easier for me, as well, to have all of this somewhere easy to refer back to later. But it’s turning out to be a pretty long story so this is just part one, which is about the initial diagnosis.
So, first of all, no, I do not have any family history of breast or ovarian cancers. My mom has five sisters and I have eighty-eleven cousins on that side and none of them have ever been diagnosed with any so-called “female” cancers. On my dad’s side, my grandmother did have breast cancer but it was well after menopause so they don’t count that as far as genetic susceptibility. I think, like a lot of women, I assumed that family history is way more important than it is because they always ask you about it. But the truth is, most women who are diagnosed with breast cancer, like me, have no family history at all.
Second, I did have yearly mammograms – mostly. I actually had my first mammogram in my mid-thirties, when my OB/GYN felt something at my annual exam. It turned out to be a cyst; I met with a breast surgeon but decided to leave it alone as it wasn’t bothering me. A few years later the same thing happened; that time, they actually had me go back in for a core needle biopsy, but it was still nothing. Then I turned 40 and followed the advice to go get yearly mammograms. At least, I did until last year. I had seen my OB/GYN in March and everything was normal. I always get my mammograms six months after my annual exam at the suggestion of a technician I saw a few years ago – that way, she pointed out, you have a professional looking at your breasts every six months, one manually and one with a machine.
Last summer, after my annual exam but before my mammogram, Blue Cross somehow lost two automatic payments sent by my bank and canceled my insurance. After hours of arguing on the phone and complaining to the Texas Insurance Board, I bought some catastrophic coverage and paid the fine for not having insurance for the last half of 2015. I didn’t have time to fight them any further, I reasoned. I also didn’t get a mammogram last year – I didn’t go to the doctor at all between August and December, because my insurance had been canceled and I was busy at work anyway. I could have afforded to pay for it out of pocket, sure, but honestly I didn’t think it would be a big deal. No family history and I was only 46 years old.
Happy in Disneyland Paris in September, pre-mammogram. And with boobs!
See, the U.S. Preventative Task Force now says that yearly mammograms can wait until women are 50 for those of us without family histories. Even the American Cancer Society says you can wait until 45. The truth is, almost every breast cancer survivor I know was diagnosed in her thirties or forties. Still, I think one reason I didn’t worry about missing my mammogram last year was that “new” recommendation that women wait until 50. Needless to say, I’m now against that recommendation. However, in fairness, no one can tell me whether or not it would have made a difference if I had gotten a mammogram last year or not because I have a type of cancer that is very hard to spot. (Admittedly, part of me thinks they wouldn’t tell me anyway. What good would it do to make me feel worse than I already do about missing it?)
So, in January I got my insurance back. This March I saw my OB/GYN and she didn’t notice anything strange. Sometime this summer, my husband Tony said that he thought something felt weird in my left breast. I felt the area he pointed out, and it did feel odd, but it didn’t feel like what I thought cancer felt like. I was under the impression that cancer felt like a lump. Most of my friends say it felt like an almond or a marble. But this wasn’t even a lump. It was more like a thick spot, maybe kind of a ridge. I figured it was just the edge of a muscle or tendon, or scar tissue from my previous surgery that we were just now feeling because I had lost 70 pounds. Plus, I told Tony, my annual mammogram was coming up soon anyway, so I’d just wait and tell them about it then. It was so unconcerning to me that when I went in October, I completely forgot to tell them about that funny spot.
When I went for my routine mammogram in October, they did the mammogram of the left side twice “to get a clear picture.” Then they called me the next day to say there was a blurry spot and I needed to come back in for another mammogram. The second mammogram was read that day and I was immediately sent for an MRI. As soon as they saw the MRI, they called me at home and told me I needed to come back for a core needle biopsy ASAP. I think that was the day I finally really looked down at my boob and said to Tony, “hey, has my areola and nipple always been kind of folded in on that side?” He looked at it closely. “I don’t know,” he said. “I don’t remember seeing it before.”
I had the biopsy (as illustrated above) on a Thursday. That Friday, we ran away. We went and spent a last minute weekend in Austin, just the two of us, somewhere we didn’t have to wonder about the test results. But honestly at this point, I knew. Something was definitely wrong. I told Tony I was sure it was cancer. We just didn’t have any confirmation yet, and the waiting was most definitely the worst part. We finally got the results of that first biopsy a week later from my gynecologist, who I’ve known for 15 years. “I’m sorry, Elizabeth,” she said gently when I finally got her on the phone. “It’s definitely carcinoma.” I could hear the tears in her eyes when she confirmed, “you have breast cancer.”
So – that takes you through the initial part of the story. Next post I’ll take you through what came next (we literally had not a clue). What do you do when someone says “you have cancer?” I think I said, “Oh, okay, thank you Dr. Tillman.” And then I hung up the phone. And I cried.