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

Welcome to OCF Colleen! You have been thru so much.

Its best to be treated by an ENT who is familiar with oral cancer patients. Sometimes that means driving a few hours to see the correct specialist. I think you are seeing someone who specializes in dealing with children's ears instead of oral cancer patients. There is a huge difference in the quality of care you will get with the correct doctor. I see an ENT who is one of the best in my area. He treats mainly oral cancer patients so is very familiar with what we go thru and how to best treat us. I also see a radiation oncologist 2x per year, a medical oncologist 2x per year and an oral surgeon only if I have a specific problem.

The hyperbaric oxygen treatments (HBO) are the easiest thing you would go thru. The tube is no big deal at all. After going thru radiation, many patients find themselves with unhealing wounds or osteoradionecrosis. HBO will take care of this and help you with healing. It is not difficult or claustrophobic being inside the glass tube. I have successfully done 125 of these. I am not aware of other ways to heal the osteoradionecrosis. i do know that if you dont take care of it that it will only get worse and become much harder to fix. There usually comes excruciating pain with this as well so I would suggest you help yourself by taking care of this now. If left untreated you would have to get your jaw removed which is an operation that is very difficult to go thru and recover from. My recovery took over a year but that is due to my complications. Others have bounced back within a few months. Much easier to do the HBO and avoid this major surgery.

Best wishes with everything you are going thru.

Hi, Colleen,

I agree with Christine. I want to add that your health is the most important thing now. I am guessing that HR will accommodate your treatment schedule. You cannot be fired for having had cancer or for pursuing the necessary treatments to support your health. You might consider arranging a meeting with your HR rep and get him/her up to date on your appointments.

Healing is a big issue post radiation. My husband also had osteoradionecrosis (ORN). It is serious and requires medical attention. My husband had a mandibulectomy to correct his issues along with HBO. While he was in the chamber he watched movies and took naps.

I also believe that an ENT with experience with head and neck cancers is crucial. Even if you have to travel further to see one, you'll have confidence in your care. Maybe, the new ENT can refer you to a more local ENT who can follow you but be in touch with the cancer expert as needed.

My husband sees his ENT twice a year and his plastic surgeon three times a year. He has had numerous plastics surgeries.

Is there anyone who can go with you to your appointments? I know the weather up there can be brutal this time of year. We have family in Syracuse and boy, do they get a lot of snow!

All my best to you, and good luck with the new ENT!
Anita

Hi welcome and I have to say there two ladies are right... On all accounts! Congrats on getting through everything!

Hi Christine,

I was so struck with your last line of your history "Very happy to be alive" - thank you for the wake-up slap. I have so much good in my life right now (especially a husband who does all the cooking and has adapted almost everything he cooks so I have an easier time eating!), but sometimes my health seems to just overshadow everything (couple of autoimmune things going on, too) ... and I lose focus on the positive stuff. THANKS from the bottom of my heart!

Your advice on the HBO therapy is well taken - although searching for a new doc is top priority at the moment, but yes, I'm coming to accept it as a "must" treatment, not an optional treatment. Ugggh.

And - you are very, very brave! This is my first contact with a real person who has gone through oral cancer - and female too! And best of all .... you "get it". Thanks for that, too!

Hi Anita,

Thanks so much for your post. I think the problem with my job at the moment is, I left a horrendous job last February and now have a job I love and people who respect me and rely on me. I'm a Type A person, so I hate letting people down or not being able to be at my best. And yes, HR will have to work with me - it's just having to deal with the perceived "loser" label.

And coincidentally, I have a son who lives in Syracuse (2 hours from where we live). And, yes, they sure do get snow!

Your husband is so very lucky to have you. I hope if my husband ever gets seriously ill, I can be as good a caretaker as he has been to me and you have been to your husband.

All the best to you and your husband!

Colleen, I'm so sorry to read about all you're going through. But you're very brave, and you're asking great questions. You've also gotten equally good answers from some of the most knowledgeable people here.

I was frankly shocked reading about how your RO abandoned you. For shame. And I don't often use that word, but in this case can't think of another better one. I hope you can find other doctors, especially an ENT who knows his or her way around oral cancer.

Mainly I'm just adding my support. Keep writing here, let us know how you're doing. We're all with you.

Hi Colleen,

Welcome to OCF! It is the best place for support and information on oral cancer.

I also had a lot of side effects from RT including �pre-osteoradionecrosis�. I had a great team of doctors (ENT, RO, dentist and oral surgeon). I continue to see my ENTs (one local and one at Johns Hopkins) and my dentist regularly, and an oral surgeon if needed. I also continued to see my RO regularly until he retired.

Because of the issues I had my RO and ENT recommended HBO therapy. But before I went for the HBO therapy my RO tried a medication treatment which was Trental/Pentoxiifyline plus vitamin E. My RO explained that the trental altered the shape of the blood cells so that they could get through the damaged capillaries and deliver oxygen to the radiated area. This is an off-label use of trental, but I know a few other OCF members used it.

My RO prescribed the trental treatment about 6 months after RT. He had me take it with vitamin E (800 IU twice daily). He said I had the worst reaction to RT he has seen with mouth ulcers, swelling and my healing time was off the charts. I also showed signs of ORN as my front teeth started to loosen. He had me on the trental/vitamin E treatment for about 1-1/2 years. Eventually my team of doctors convinced me to give HBOT a try, so I went for 45 treatments. I would say the trental did help me, but it was a slow process. The HBOT had a quicker impact, but spending a few hours per day in the HBO chamber is a �major pain�. Many of the chambers have a TV attached so I was able to bring DVDs to watch while getting the treatment.

I would definitely recommend finding a new ENT � one that treats a lot of OC patients. Are there any major cancer centers in your area? There is a list on the OCF website.

I�ve been to a few different doctors and have requested copies of my medical records from each doctor which I scanned and therefore I was able to provide copies to any new doctor I would go to.

I hope this info helps � good luck!