Part 2 my cancer story: Mucoepidermoid carcinoma

After my ENT told me I had mucoepidermoid carcinoma - salivary cancer, I lost it. The tumor was attached to a muscle in my neck, it was fragile, and burst during the surgery. He told me this was not normal. The pathology did not have clean margins meaning I was just beginning my journey. He had already set me up with a oncology radiologist in the same building. He said he had already talked to the radiologist about my case and is expecting me. My ENT also told me he was surprised by the pathology. If he had known or thought it was cancer, he would have done the surgery differently. So. much. to. process. Before leaving the building I setup my appointment with the radiologist for the following Tuesday - the day after Labor Day.

Now I had to start spreading the unexpected news starting with a call to my husband in the car. The hardest call I have ever had to make. With today's technology, I still wanted to call my parents, brother, and best friends. Nothing like telling people you love, you have cancer. You can hear and feel the mood change drastically over the phone. Then contacting a few through texting as well when a phone call isn't going through....Knowing they are instantly right there with you in the cancer journey - supporting, praying was all I needed.

Then it hit me and research began. Salivary cancer is rare - less than 1% of all cancers diagnosed in US. My kind was the most common. A male in his 60s is most likely to get this kind of cancer.  There are lots of theories of what may cause this, but nothing conclusive. Radiation, however, can be a cause of head and neck cancer. Ironic isn't that radiation was the first thing recommended to me? I read that surgery and radiation is typically used to treat my type of cancer. chemo isn't a known treatment unless it is high grade salivary cancer. (info from Acs)

Armed with knowledge now, I knew I wanted to seek some other opinions. Not having grown up in the area or ever been in this position, I had no idea here to begin. So I began asking my fellow cross country coaches. One of them had worked with and was friends with an ENT surgeon (head and neck cancer experience) at U of L that he offered to contact for me. I was able to get an appointment with him the day after my radiation appointment. I thought I was all set!

From my initial appointment with Dr. Birkhead, the radiologist, I learned I was stage 1, low grade carcinoma. He recommended radiation of course. He mentioned a few side effects, but didn't worry about any long term effects. He said another surgery was not needed. After leaving there, radiation seemed pretty straightforward. I even got my mask ready that day! I also set up my PET scan for the following Monday.

mask for radiation

  The following day I met with Dr. Bumphous, the U of L ENT surgeon. It was a 2 hour wait because they worked us in and we ended up being their last patient of the day. He agreed that it was stage one. But didn't want to say what grade until he did another pathology. He recommended surgery on what he knew so far. He wanted to meet again after I had the PET scan and the results of the second pathology.

Finishing our trail marathon

The weekend after these meetings was my trail marathon in MN with my friends. Perfect timing. A fun weekend. (a blog post to follow in the near future about this race) I remember getting on the bus to head to the start line and the race volunteer came up to congratulate us and to be grateful for everything we have - including our health. That was a hard thing to swallow because I didn't feel like I did have my health. I was still running 26.2 miles with 5000+ elevation dealing with a knee injury, just recovered from 'minor' head and neck surgery - not having full mobility of my neck yet, and finding out I had cancer. It is all about perspective. I made it to the start line.

The race was great. I was not ready to stop running because then I knew I had the PET scan the day after I got back home.

I revisited all the specialists after my PET scan. The good news that the cancer was contained to that area. There was some activity in front and behind my ear indicating possible cancer. It wasn't conclusive because inflammation also shows up in these type of scans. These results did not change anything that the radiation dr had previously mentioned to me about treatment except expanding the radiation a little bit more to hit those areas that showed 'activity'. It was be 6-7 weeks of 5 days a week of treatment. I can start anyday. We did not want the chance of cancer coming back as it comes back meaner and more aggressive. With the results of the second pathology and the PET scan, the surgeon thought the cancer was intermediate grade. With this upgrade, he suggested radiation or surgery would both have the same result of eradicating the cancer.

UGH! Radiation vs. Surgery. We get to make the call. How do you do that? Radiation has lost of taste and long term effects: dry mouth affecting the teeth, possible cancer again. Surgery deals with the facial nerve. And if there isn't clear margins, radiation would have to happen anyways. We ended up getting a connection to a doctor at Dana Farber in Boston. We flew out there for two days one night. We were able to meet with a team: medical oncologist, radiation oncologist, and a ENT surgeon. They would help us make the decision. They said that the first surgery was not seen as an oncological surgery which is the first step in treating this type of cancer. Also I am still young enough to possible see side effects from radiation. With this information, I called Dr. Bumphous to scheduled my surgery for Nov. 8. 

Dana Farber in Boston