Wednesday, October 30, 2013

Let's talk about cancer.

Three years ago at this time I was lying on the couch, watching St. Elmo's Fire with Friend Pens The Lotion Slut, feeling rather giddy from a combination of red wine and Vicodin. I had just had the majority of my hard palate and all of my soft palate removed due to a case of oral cancer. If you want to read the whole story, go back to September of 2010 in the archives.

(St. Elmo's Fire is a good movie filled with terrible people. Skip it; that way, you won't have to wish for that two hours of your Vicodin- and red-wine-soaked life back.)

Let's talk about oral cancers. There are a lot of them, some of them frightening, some of them less so. All of them are on, as they say, the rise, due to a number of factors. Here are some interesting things about OC that you may not know:

1. A large number of oral cancers are due to the human papilloma virus. In different forms, HPV can cause warts on your fingers, genital warts, cervical dysplasia and cancer, or lumps in your mouth, or oral cancer. There are innumerable strains of HPV. Most of them are harmless. Some are really a bitch to get and to treat.

2. Oral cancer, which used to be the province of men over the age of 60, is increasing in young women. Part of this has to do with the near-ubiquity of HPV in the population. A lot of it has to do with the fact that young women now smoke more and drink more than young men. Alcohol or smoking predisposes you to oral cancer; doing both at once is a great way to lose chunks of your tongue or jaw.

3. Oral cancer is underdiagnosed in young people. Part of this has to do with the fact that the thinking on OC hasn't caught up with the reality. Part of it has to do with how often young people visit the dentist. I go to the dentist twice a year; my OC was found by The Fantastic Hygienist at my dentist's office. It had grown from nothing to a two-centimeter lump that I had not noticed in half a year.

4. Oral cancer has a huge impact on your life, no matter how minor it is. I got lucky: all I have to do for the rest of my life is wear a metal-and-plastic prosthetic that protects my airway and allows me to speak, and get yearly checkups (complete with MRI and CT scans and all the associated radiation) to make sure that I still have no evidence of disease. Some people, like my pal Mary, have lost much, much more than that to this disease, and the consequences are ongoing.

5. Oral cancer can hit you even if you don't smoke, or drink, or have sex. Mary, for instance, had a stage III squamous cell carcinoma of the tongue that was HPV negative. She is a lifelong nonsmoker and nondrinker. OC doesn't play favorites.

6. Which leads me to THE MOST IMPORTANT POINT OF ALL: If you see or feel a weird bump in your mouth, get it checked out. If you've got a gut feeling about it, don't stop asking for answers until you know what's really going on. OC is still one of those things that docs don't expect to see in people my age (forties) without other risk factors. I was incredibly lucky in that I had a dentist who was paranoid as fuck about the thing on my palate. Other people have not been so fortunate; as a result, they've had to undergo things like feeding tube placements and the loss of all of their teeth.

My cancer, polymorphous adenocarcinoma, doesn't have known risk factors. The article in Wikipedia on it is still only a stub. It's rare, it's non-invasive (usually), and can normally be treated with what's called "wide excision," also known as "taking out most of your mouth and changing your life forever." The type of cancer I had was indolent, meaning that it didn't spread or grow very quickly. It could happen to anybody. It happened to me.

So, on this third, give or take, anniversary, I have this one request: think about oral cancer. Go to the fucking dentist. It doesn't matter if you haven't been in fifteen years; they get off on that stuff. Get your mouth checked out. Avoid what I went through.



13 comments:

bobbie said...

(Non-alcoholic) cheers to you. Bless you for the reminder, and YAY for your survival.
Hugs ~

Now Am Found! said...

great advice, terrific teaching opportunity. glad you are doing so well.

RehabRN said...

Yes, yes, yes! Thanks for telling your story all over again.

If you save one person every year you tell it, it will be worth it.

Cancer sucks, And if one more paranoid dentist helps someone else, hooray!

Anne said...

Thank you for this post. I hope that it is widely read.

Lynda Halliger Otvos (Lynda M O) said...

Thanks, Jo, for this cogent reminder and plea for sanity in our lives. We so need to become aware and practice preventive medicine.

Knight Brian said...

Wow, sorry you had to go through that. They say what does not kill us makes us stronger. I work on a surgical-onc floor and half of our patients have some form of head and neck cancer. No doubt it can be life changing in a bad way. You mentioned your friend Mary who was HPV negative. This has been a interest of mine. When a patient does not smoke or drink OC is often blamed on HPV. My question is what about all the other toxins and carcinogens that go through our mouth everyday. Take tooth paste for one example. Normal tooth paste has two or three carcinogens which I can not name off the top of my head right now. Could things like that be a major cause of oral cancer in people who do not drink or smoke and are diagnosed at a young age. I think so what are your thoughts?

Knight Brian said...

Wow, sorry you had to go through that. They say what does not kill us makes us stronger. I work on a surgical-onc floor and half of our patients have some form of head and neck cancer. No doubt it can be life changing in a bad way. You mentioned your friend Mary who was HPV negative. This has been a interest of mine. When a patient does not smoke or drink OC is often blamed on HPV. My question is what about all the other toxins and carcinogens that go through our mouth everyday. Take tooth paste for one example. Normal tooth paste has two or three carcinogens which I can not name off the top of my head right now. Could things like that be a major cause of oral cancer in people who do not drink or smoke and are diagnosed at a young age. I think so what are your thoughts?

Wendy said...

My dentist floored me the other day when, for the very first time, he actively looked for oral cancer. Now, reading your post, I understand why and I really hope more dentists will start doing this for everyone.

Thanks, Jo!

Anonymous said...

I've been a silent reader...and I don't visit my dentist 2x a year...it's more like every freaking month (lovely weak tooth enamel). So I HOPE that if I don't notice something he will.

The comment above about toothpaste surprised me, I hadn't even considered toothpaste being a problem.

Regardless, congratulations on your anniversary for surviving cancer.

Anonymous said...

Just last week, my dentist told me "you need to have ENT check that out." Female, in my 40's, never smoked... I have been talking myself out of going. I'm going. Thank you.

Jo said...

Hey, Anon whose doc said you should see an ENT?

Chances are it's nothing. If it *is* something, leave me a note or email me (address is to the left, under "speak"). I got your back.

Anonymous said...

Fairly regular reader here--you are hilarious!

I want to thank you for using your blog to bring attention to OC and how it can, unfortunately, happen to anyone.

Last February, I was diagnosed with stage IIIa squamous cell carcinoma of the sinuses, tongue, throat and trachea. Three rounds of chemo and 8 months of radiation plus surgery later, I have only one stable tumor left...in comparison to the three tumors in my sinuses and numerous tiny ones on my tongue that I started with. I don't have HPV and I've never smoked a cigarette. When a total stranger asks if I have a cigarette, I respond with, "I already have sinus cancer, but thanks!"

My "thanks" to you, however, is not snarky, it's genuine. Thanks for blogging about something that I know can be very personal so that others might avoid all of this cancery crap.

Sandra Dalton said...

I am a hospice nurse. I see all kinds of rare cancers. Most are advanced. Any education or posts are all helpful and potentially life saving advice and stories.