The Dental Side Effects of Head and Neck Cancer - Have You Been Warned

I am a thyroid cancer survivor, which while in the neck is usually separated from the head and neck cancers, and tooth decay after radio iodine is a big problem for all of us. It seems like our endos rarely mention this as a potential side effect as they prepare us for RAI, and we all wind up spending tons of money for dental work that might have been prevented had we been warned ahead of time to get a deep cleaning and fluoride treatments. In my opinion warning about this should be part of the standard of care.

Deb

I find that doctors are very remiss in imparting important information that patients need to know, unfortunately.
And when you confront them about their lack of communication, they dismiss your concerns arrogantly & obnoxiously.

My experience has been quite the opposite. Prior to starting treatment, my rad onc examined my mouth & teeth, inquired about how I care for my teeth and whether I see a dentist regularly, and warned me to become especially diligent about my dental care going forward. Following treatment, I was advised to be sure to see a dentist who is familiar with HNC and to have frequent follow-ups. The staff even ask about this at every follow-up visit.

You received much better care than I did, being treated in Boston (for two-stage (4) four Throat and Neck Cancer tumors) I had thought the treatment received was as good as I could get anywhere. I'm now living with Osteoradionecrosis and my jaw bone is infected, preventing surgery and while my teeth are rotting away. I am now being treated at Dana Faber clinic for both the Cancer care and my Jaw Problems.

I am so sorry to hear that, pjconley5. It's not bad enough to have this kind of cancer once, never mind twice, and then to have the whole jaw/dental issue to contend with. Throughout my treatment, I kept reminding myself that, someday, my experience might benefit others. That helped get me through. Maybe you can do the same because just bringing it up here in this forum is alerting others to be extra vigilant...so in that way, you're already helping others. Still, I'm sure you'd just rather not have the problem to begin with. Hang in there...

Pjconley5
So sorry to hear that. I was (mis)treated at Dana Farber as well for my stage 4 squamous cell carcinoma of the tongue.
Though I refused radiation & chemo, I still have long term nerve damage including balance problems and some hearing problems from the neck dissection so I truly feel terrible for what happened to you. I totally agree with you about Dana Farber. But thankfully we're still here to commiserate about it.

Dear esther2k5 My apologies for not being clearer on my original message. My original treatment plan had nothing to do with Dana Faber. In Feb. 2005 when all of this started I was being treated at three different Hospitals (Clinics) and up until Feb. of 2017, there were always at least two different sharing my care. It was in Feb. of 2017 that all of my care was taken over by Dana Faber, and so far so good from my point of view.

We all have opportunities to share help each other. Maybe you are right in stating that the most we will be able to do is educate other folks to be more diligent in their inquiries before actual treatment begins. When friends or relatives speak to me now I tell them two things, the first is, "there are no stupid questions" and that "knowledge is power" and I elaborate on the fix I found myself in when I started being told that radiation damage started rearing its ugly head. My assumption is that if I knew some of this info back then, I may have done things differently.

I guess I did misconstrue your post, pjconley5--sorry about that. I'm just not a fan of DFCI or hospitals/MDs in general and pray to stay out of them. So far so good. Hope your jaw issues improve.

Thanks for information I have had a similar response. Before radiation treatment for stage 4b throat cancer I had several teeth removed. About 14 months after 4 weeks of daily radiation I started losing teeth. Now I only have 5 bottom teeth and 2 upper teeth. I have top and bottom flexible plates. I struggle to eat since swallowing is still impaired and I am weaker now. I will have a pet scan of my neck and chest the first week of Sept. Hope to find good results namely little to no sign of cancer reoccurrence..