Hi,
My name is Colleen and I'm an oral cancer survivor: surgery 3 years ago, radiation 2.5 years ago. Complications/side effects from the radiation include: hair loss on back of my head which fails to grow more than 2-3 inches (I have long hair), voice change (sound like a smoker now), extreme dry mouth, cavities (even though I'm very careful about brushing, flossing and fluoride treatments), only about 80% of my taste has returned, I can't eat anything textured (like meat) unless I just swallow it with water, chronic sinusitis, chronic tenderness of my tongue due to burning and scarring from the radiation, now Raynaud's of my tongue secondary to RT - to the point of not being able to speak or swallow when it strikes, and last but certainly of most concern to me, osteoradionecrosis, inside of left mandible next to where the radiation burn disformed my tongue.

I'm currently in the care of my dentist (her hygienist discovered my lump on a routine cleaning), my PCP, radiation oncologist, ENT, and an oral surgeon (for consults only). I love my dentist and her team. I love my PCP. My radiation oncologist washed her hands of me almost the day my 7-week radiation treatments stopped, and she stated I would follow up with my ENT in the future. My ENT was kinda, sorta chosen because he's in my area, and I had NO IDEA how bad the complications of RT could be or will get. My lump was small, but after the excisional biopsy surgery, I was stunned to learn that it had invaded the maxilla. Also the skin grafts did not take well, which left the roof of my mouth with a very tender thin covering - of course with no salivary glands. (The resulting gap in the back of my throat means I have to be very careful when swallowing - but I still choke all the time.)

ENT - is older, has had other patients with similar conditions to mine, but I think the majorty of his practice involves taking care of children's ears - given the people in his waiting room. He is the only ENT in our county - and his practice is jammed. I usually wait over an hour for an appointment in a waiting room packed full of children with colds, etc.

In September I discovered the osteoradionecrosis in my lower jaw - thought I had a piece of fiber or something stuck in my gum - but a piece of bone came out. And then the spot wouldn't heal, and then more bone broke off, etc. So at about Thanksgiving time when I finally went to my ENT (I see him every 3 months) - he said, "Oh, geeze." And then told me to find out about hyperbaric pressurized oxygen therapy. So I did, went through the whole nine yards (6-hour appointment) where I met my HPO team, had my chest x-ray and everything .... and then chickened out when I saw the capsules. I'm not claustrophobic - but the chambers scared me - can't even figure out why. Although I can also say, a commitment of 3 hours, five days a week for the next 5-9 weeks is a huge commitment and will have a negative impact on my job - I'm not even sure how HR will deal with it. The closest place to me is 1.5 hours away - although only .5 hours away from my place of employment. So, it is doable, but in winter the roads are terrible in this area, so I'd like to wait until March - especially if there are other options out there.

However, when I chickened out and called the head HPO team nurse to apologize for taking up their time and that I wouldn't be going through the treatment, she was a little surprised to learn that the decision to use HPO was my ENT's first choice. She told me HPO is usually used as a "last resort". I went back to my ENT to tell him I wasn�t doing the HPO - he agreed that it did appear to be healing on its own - then proceeded to break off a another 1/4" piece of the exposed dead bone. (Actually, that area has since healed over.) But now I�m getting vibes from him that my decision was "not okay". At my appt. last week (a total of 3 minutes with him) he said it looked better, was still healing, but if in another month it wasn't completely healed, he was going to have "to rough it up". That was it - no explanation of why, what for, nothing. I was seething at the moment anyway because I traveled an hour on very bad icy roads to get to my appointment ON TIME only to have to wait for an hour and 25 minutes. I wasn't in the mood to be chatty with him and didn't ask for further information. I also told his receptionist at the desk not to make my appt for a month but rather for three months (to give myself time to search for a new ENT and get my records transferred).

My question to folks is: post initial treatments and therapies, who typically does the majority of your follow up? ENT? Radiation oncologist? Oral surgeon? Dentist?

And, if anyone has had osteoradionecrosis - were there other treatments (other than HPO) that worked?

I can't think of a worse time to be considering switching docs - and perhaps that's why I've put this off for so long for fear of having to bring someone new up to speed with my situation.

Any advice will be greatly appreciated!

-Colleen