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Adenoid Cystic Carcinoma - Head & Neck

by Ted Thomas - 1/20/2006

Join Ted on our Adenoid Cystic Carcinoma Support Forums


Before reading this, there are some important things to remember:

This is only my experience. It's not in any way meant to predict what someone else will go through. There may be similarities, but there will also be differences.

This happened almost a quarter of a century ago. Technology has advanced tremendously, and I'm sure that people undergoing similar treatments today are finding that their recovery periods are shorter and that there is far less discomfort.

As uncomfortable as some of the experiences were, I made it through them and have been living a normal life since.



I was diagnosed with Adenoid Cystic Carcinoma in late 1982, though I'd first noticed a lump on the roof of my mouth early in the year (a couple months before my 18th birthday). As I was a teenager, I assumed that whatever sense of invincibility all teenagers seem to have would protect me, so I didn't bother doing anything about it.

It wasn't until the day before Thanksgiving that I was jumped by four guys while walking home from a friend's house. The attack left me with some loose teeth and cracked left cheek and sinus bones. I went to an oral surgeon to get fixed up. He checked me over and was reaching for the light to turn it off when he said, "Oh, hang on a minute. I saw something on the roof of your mouth that I meant to look at." before having me open up and let him poke around with his finger.

He decided to lance it to see what happened (aside from me yelling). He didn't like what he saw and set up an appointment for me to come back in the next day for a biopsy. The biopsy results were inconclusive, so he referred me to Dr H. Chris Doku, the chief of maxillofacial surgery at New England Medical Center, who did another, larger biopsy that confirmed adenoid cystic carcinoma.

Being a teenager, I did what many would do in that situation. I refused to discuss it, or any possible treatment. My parents were finally able to persuade me to go in for surgery by offering to pay for me to accompany a friend and his family on a trip to Florida.

On a rainy afternoon in March of 1983, I quietly rode into Boston on a train with my father. I was given a private room that didn't have much light. My mother drove in later that evening and both parents sat with me while I had a cheeseburger and fries. Looking back, I can't imagine how hard it must have been for them to say goodnight, knowing that their son was going in for cancer surgery at 6:00 the next morning.

I've been told that the surgery lasted almost 18 hours, during which time the surgeon removed the left half of my hard palate and my left sinus; along with the maxilla from the cheekbone down, starting at the the front where the lip meets the gum and extending to the back of my throat. He did, however, leave the uvula attached by a cord of tissue that extends from one side to the other.

My day or so in the recovery room was an experience that still wakes me up in the middle of the night. Although the top half of my mouth was packed with gauze and cotton, I was able to start eating again as soon as my stomach was able to tolerate food. IIRC, I ate a regular meal the first or second day out of the recovery room. Three or four days after that, a few friends stopped by and smuggled me in some beer -- we got caught and I got a (well-deserved) lecture from the nurse, although the doctor who came in afterward had a hard time keeping a straight face while trying to tell me how foolish it was to be drinking beer in the hospital. **I don't recommend drinking beer in the hospital, but then again, I'm not 18 anymore... ;->

It took a couple days to learn to speak with a mouthful of gauze, but overall, it wasn't so bad.The period following surgery was rough. There were about eight months' worth of trips into Boston to have the dressings removed and the site poked, prodded, and cleaned.

I was eventually fitted with a temporary obturator to fill the void in my mouth/throat left by the surgery. There were no teeth on the first one as I was told that my mouth would change shape as it healed, and there was no sense in spending all the extra money to dress up something that wasn't going to be used for much more than a year. It took a while to learn how to drink liquids without having them run out my nose, but with a little determination, it was accomplished. Subsequent obturators have all been fitted properly so as to prevent leakage and to make speaking easier. They've also included normal looking teeth and serve as a partial denture to replace the missing teeth.

There's a very faint scar that runs around the base of my left nostril and down the left ridge of the philtrum from where the surgeon had to open my cheek to get at the internal structures. It's so well concealed that people need to get right next to my face to see it -- the only part that's visible at all is where it runs around the base of my nostril. The scar from the nose to the lip has completely disappeared.

Everyone I've met since then has been surprised to learn that I've had any sort of facial surgery, nevermind surgery that has removed so much of the internal facial structure. As long as I have the obturator in, my speech is normal. Without it, I sound like Miss Othmar from the old Charlie Brown cartoons.

I was told to expect some permanent nerve damage from the surgery. It's manifested in two ways. The first is the sense of touch on the outside of my left nostril. It's not numb, but if something lightly brushes across it, or a breeze catches it just rught), the resulting sensation's something between a tickle and an itch. Depending on my mood, it can be mildly amusing or annoying to the point of being infuriating. If I rub the side of my nose and use any pressure, the sensation is completely normal.

The other reminder of the surgery is the occasional pain in the canal that runs from what used to be the left sinus to the nasal passage. The surgeon explained that it might be something that I'll outgrow, or it might be something that I'll have to live with. It's turned out to be a bit of both. It flares up occasionally and hurts like hell, but it subsides within a few minutes and I'm left with either a dull or throbbing ache that can last anywhere from a couple hours to a couple weeks. There's no rhyme or reason to it, and there's no specific activity or weather change that triggers it. It happens completely at random, and I've gone for periods of two or three years without any pain whatsoever, followed by recurrences that happen every few months.

The strangest thing, however, is phantom pain that I get in the area where the left lateral incisor and cuspid (canine) teeth used to be. Sometimes when I'm drinking a cup of hot coffee, as soon as the coffee hits the teeth on the obturator, I'll get a shooting pain that goes straight up and into into my left eye. When it happens, the pain hits instantly and tapers off, leaving me squinting like Popeye for about five seconds.

The thing that's really stuck with me since the surgery is that during one of my initial followup appointments, I asked the surgeon if my life expectancy would be affected. He told me that due to factors (I don't remember what, exactly) stemming from the cancer and the surgery, I might make it to 35. Well, I turned 41 in June of 2005, effectively blowing that prediction; but since my 35th birthday, there's been a recurring thought that I'm going to suddenly drop dead one of these days. Overall, my health is fine. I could stand to lose some weight, but that's been true since I was about eight years old.

It was around that time that I decided to research adenoid cystic carcinoma a bit and realised just how lucky I was. My heart goes out to those who've lost so much more than I did. Sometimes I feel guilty that I escaped with virtually no visible tipoff to others as to what I've been through. I suppose most psychiatrists/psychologists/therapists would consider this normal, but it still bugs me nonetheless when those feelings pop up.

~Ted