A week before Thanksgiving I found a lump in my neck. I just happened to run my hand over the front of my neck one evening and there it was, a pea sized lump. Now as the daughter of an oncology nurse, the absolute worst possibilities ran through my head immediately; but I am also a pragmatist. There were a lot of things that little lump could be - a weird zit, ingrown hair, inflamed lymph node, or any number of other benign things.
Turkey Day came and my little lump was still there. So I went to see the family doctor, Dr. G. "Wow, how did you even find this?" asked Dr. G.
"I just ran my hand over my throat," I replied.
"Huh, wonder what it is," he muttered with his brows furrowed.
"So do I, doc. I was hoping you could tell me."
Dr. G scratched his head. "Well, your thyroid is right there. Let's get a picture of it and get a better look at things." He ordered an ultrasound and a nurse scheduled it for the following week. It didn't show much conclusive, just 'a possible cyst on or near the thyroid'. Wonderful, I thought, now I have a whole new realm of possible worst cases to dwell on.
Dr. G wanted better pictures so he ordered a CAT scan. When the nurse called to schedule that with me I asked her, "At what point can we stop screwing around with pictures and just cut the thing out and send it off for a biopsy? I can feel it right below the skin. I figure with an out patient procedure and maybe 4 stitches, we could take the whole thing out to send to a pathologist. I really want to know whether its malignant."
The nurse chuckled and said, "I know exactly where you're coming from but no one is going to do a biopsy with out a CAT scan to confirm what's there. The insurance won't cover it if they do."
Right.....gotta keep the bureaucracy happy.....forgot about that part of medicine. So I spent a week reading about and dwelling on worst case problems associated with thyroid cysts.
The CAT scan came back as 'a small mass, most likely a cyst, in the epidermal layer'. I was relieved. This wasn't sounding so bad now, especially after all the worrying I had been doing. Dr. G said, "These things sometimes pop up in the skin and there is really nothing to them. We have two options here. We could wait and watch it for a change of size or other warning indicators or I can refer to an ENT." As far as I was concerned the only choice was the latter.
I saw Dr. D, the ENT, just before Christmas. He looked at the CAT scan and said, "Yep, that does indeed look like an epidermal cyst. They don't do much really. We could leave it there and watch it if you wanted. They do have a tendency to get infected and burst though, so we would want to watch it for changes in size."
I shook my head, "Doc, I was raised by an RN/OCN. This thing wasn't there before and now it is. By definition there has already been a change in size. Can we just cut it out now? I'd like it sent to a pathologist for my peace of mind."
Dr. D smiled, "That's what I would do if I were you, take it out before it becomes an issue."
Since there did not seem to be any real reason to hurry about this, I scheduled the procedure after New Year's so my family and I could still go spend a week with my parents for Christmas. On January 10th, they put me under sedation and Dr. D cut the lump out. Hubby brought me home and, while I slept the rest of the day, he and the boys went to fill my post-op prescriptions. I had a total of 5 stitches in my neck; just a scratch really, but fascinating to my children none the less.
Four days later, on Friday morning, I was running errands, driving on a relatively busy street with the kids in the backseat when my cell phone rang.
"Jenni, it's Dr. D--. How are you feeling?"
Oh crap, I thought, something is wrong. If everything was fine, it would be his nurse calling. "I'm doing OK, doc. How are you?" I replied as made a quick right turn onto a side street.
"I got your pathology report back.....," Dr. D started and then there was a long pause.
Uh oh, I thought.
"......turns out this thing wasn't a cyst after all...." he continued. He was still talking but my ears, my eyes, and my brain suddenly all stopped working at once. I caught another word of what he was saying as I parked the car, "...sarcoma...." I can't remember what came after that really. It was something about rare cancer, catching it while it was still very small, and really good odds. I was still having a hard time getting past that s-word...sarcoma. That's an ugly scary word.
Dr. D must have realized he had lost me there for a moment. "Jenni?"
"Yeah....sorry, doc," I mumbled.
"We need to go back in and do another procedure called a Mohs surgery. It's the prescribed treatment for this," he said.
"I should probably see an oncologist too," I said.
"We can get one involved but for surgery he would refer you to someone like me or to someone who does a bunch of Mohs procedures, that's typically a dermatologist," Dr. D said. "I've got a bunch of calls out to find out who in the area has done the most of these. I know you are scheduled to come in to the office on Tuesday but I want to see you Monday instead. I'll have everything set up by then." He was very encouraging, up beat, and on top of things. Great qualities in a doctor.
"Sure, doc, see you Monday," at least I think that's what I said. My brain was still screaming, SHIT!
As I hung up the phone, my 5 year old asked, "Mommy, what's on this street?"
"Huh? What, Monkey?" I croaked as I felt my heart climbing into my throat.
"Why are we stopped on this street? Does someone live here?" he asked.
"I just needed to pull over to answer the phone, kiddo. Just give me a moment," I said as I rested my head on the steering wheel. Keep it together,girl, so you can get yourself and the kids home safely. Good ol' pragmatic me.
We got home. I made lunch. I took my 5 year old to school, and put my 3 year old down for a nap. Then I started doing a little research. Research is usually what I do when something scares the hell out of me. Mohs surgery is pretty straightforward and not terribly scary in and of itself. I called Dr. D's office back and talked to his nurse.
"What is this thing in my neck called again?" I asked. "I was not in a place where I could take notes when Dr. D called earlier. The only part I remember is 'sarcoma'. Some of those are pretty terrifying so I wanted to make sure I was reading about the right one."
"I would too," she said. "It's called dermatofibrosarcoma protuberans or DFSP for short." She spelled it out for me and then paused, "Do you have any questions about it right now?"
"Can I get a copy of the path report?" I asked, knowing that my mom was going to want to see it.
"Yep. I don't have electronically but I'll make sure to give you a copy when you come in on Monday morning. Any others?"
"I need to think about this a bit first," I said.
"OK, if you do think of any or need anything else just give us a call. We'll see you Monday morning." She was very helpful, up beat, and empathetic. Great qualities in a nurse.
I hung up the phone and listened to the clock on the wall ticking as I stared at my notes on the table. I have cancer. This rather sucks.