Diagnosis #1: Adenoid Cystic Carcinoma (ACC)

The week following the FNA (fine needle aspiration), I was preparing for a two-day offsite with Devin’s senior leadership team. We would kick off the event with a dinner at a fancy steakhouse and then spend Thursday and Friday hammering through the agenda Devin and I had agreed upon. It was to be my first time in charge of an offsite for the leadership team, and I was eager to do it well.  

On Wednesday afternoon, Dr. Maxillofacial called my cell phone but didn’t leave a message. I didn’t pick up but my phone recognized the number as coming from his medical practice. I quickly ducked into a conference room so as to keep this conversation private and called the number back. Dr Maxillofacial picked up. I think I surprised him with a direct call back but I wanted very much to hear from him what we should do about this not-cancer lump. It wasn’t growing quickly, but my tongue would not stay away from it in my mouth, and I was finding it distracting.  

Once Dr. Maxillofacial realized it was me, he haltingly told me he had bad news for me. He said something along the lines of, “I’m sorry, Sarah. I know I told you I didn’t think your lump was cancer…but it is cancer.”  

Some kind of buzzing started in my head. With as much calm as I could muster, I asked him what kind of cancer it was. As I asked, I began to have an out-of-body experience, but this one was considerably less joyful than the time I thought I was getting engaged. It was more like I was disengaged. My arms felt numb and I watched myself from outside my body as I tried to listen to what Dr. Maxillofacial was saying. What was he saying? 

Him: “It’s called adenoid cystic carcinoma.”

Me: “Can you spell that for me?” (Me trying to use my numb arms to write this out on the whiteboard in the conference room.) “Thank you. And can you tell me what stage I’m in. I mean…did we catch it early?” The me-person standing outside of me—watching me—was amazed that I was able to keep my voice so calm when, wow, I had cancer. I was amazed that I knew to ask questions like “stage.” Did I even know what a stage was? And I knew that it was important to catch cancer early.  

Him: “We have no way of knowing what stage you are until we remove the tumor. And do I think we caught it early? I don’t know. You’ve been aware of it since October and it’s now January, so it’s hard to say if that’s early.” 

Me: “Can you and I remove it tomorrow?” I heard my voice raise a little bit as I began to give into the panic I was now feeling. Wow, I had cancer. 

The surgeon chuckled softly—f***ing chuckled—and told me that he wouldn’t be the doctor to perform the surgery, that I needed to be referred to (yet another) specialist who knew more about this cancer than he did.  

Me: “Can we call that doctor right now? Can I get on his schedule this week?” I could now hear the panic in my voice. Unbelievable amounts of adrenaline seemed to be running through my body. The buzzing in my head was almost deafening. I wanted to slam down the phone and go running out of the conference room. I didn’t know where I wanted to go but I definitely didn’t want to be on this call anymore because wow, I had cancer. And a really rare, maybe really bad cancer.

The person standing outside of myself told me, “Maintain your dignity, Sarah. Do not let this doctor hear how scared you are.” I have no idea why it seemed so important to maintain my dignity when wow, I had cancer, but it seemed super important to me at that moment.

Him: “Sarah, I can’t control other doctor’s schedules. I have no idea when he’ll be able to see you or perform the surgery.”

Me: “Can you refer me to him?” I was now pleading with this guy.

Him: “Yes. I’ll send him a letter with my recommendation of you.”

A letter? A motherf***ing letter? Okay, so now this scared-self on the phone started to get angry. I had had four months of chasing down multiple doctors and their schedules to try to find out what this lump was, and now that we know it’s cancer I am being asked to rely on the postal service as the referral service to the doctor who may or may not save my life? No f***ing way…

That’s when Dr. Maxillofacial told me that adenoid cystic carcinoma (ACC) was a particularly rare form of cancer that only 1,200 people in the U.S. are diagnosed with each year, so the doctors didn’t know that much about it. I asked what he did know about it, especially if he knew anything about survival rates.  

Him: “Well, very little work has been done on this cancer because it’s so rare, and frankly, there hasn’t been a lot of long-term tracking done. We do know that after five years, survivorship is about 80%. After 10 years it drops to around 30%. But this could all be old information. I think there may have been more work done in this field recently, so those statistics may have improved.”

A 30% survival rate? Was I going to be dead in five years? Ten years? Was I going to be dead in five months? My panic was rising again. Oh my God, I have cancer.   

Me: “Dr. Maxillofacial, where can I learn more about this cancer?” My voice was barely above a whisper.

Him: “Well, there’s some information on the internet that you can probably read. You’re a smart girl, you’ll figure it out.”

And with that, we hung up.