Dear All, I have just discovered this site, and I am thrilled. I have had a partial maxillectomy and a partial palatectomy in Jan. for SCC. I have not had any reconstruction, so I must wear an obturator to fill the palatal defect. I am facing decisions about the construction of the "definitive" obturator, now that my wound has pretty much healed.

I have pink plastic now, like a denture, and my prosthodontist is recommending metal for the next appliance....titanium, perhaps? He says that it is thinner and that my speech will improve with it. I am not doing too badly now, but I want to regain all I can of speech quality.

If you wear an obturator, please give me your opinion about what works best for you.

Also, I must make some decisions about how to secure the obturator: Either I must get my top teeth crowned to install a clip on the back side......and I hate the thought of cutting down my remaining teeth.....or I can keep securing it to my lateral incisor with a wire that is exposed, which doesn't bother me exc. that it allows the appliance to move, which keeps my tissues tender.......or I must consider having some osteointegrated implants installed in my zygoma (cheekbone) for securing the appliance.

I realize that these issues are not as grave as some that are addressed here, but they are issues that I need advice on. Thanks!

August--T-2 SCC dx'd 8/05...maxillectomy/partial palatectomy/rt.-sided neck dissection 1/4/06...clear margins and nodes, no rad., no chem.

Dear August,

I have read all of your posts and I am so disappointed that a colleague missed your diagnosis for so long. Although I don't wear an obturator, I can speak to you from my experience with my patients that do. I personally have not had one fabricated for a patient, but hopefully can answer some of your questions.

It always amazes me when some patients adapt to appliances that are made to be used for the short term. Although you are funtioning OK with the one you have, temporary obturators like the one you have, do run the risk of breaking more easily than one made of metal. So you should definately move on to a more durable one. Being thinner is also a good thing and I agree that your speech will probably be better.

Using a clip like you are with the movement that occurs is not a good thing. You have noticed one of the problems with the tissue irritation and that is a major concern. If money were no object, having implants is far better than crowns. Years ago crowns were the only option, but now implants offer advantages. The most important one is that you don't have to cut down teeth to place the crowns. You don't run the risk of getting decay under a crown, with the possibility of the crown needing to be replaced and then the obturator won't fit. However, if the cost puts implants out of the picture, crowns can work very well for long periods of time.

Sorry I can't give you any input on your follow-up care, but someone else is bound to reply.

Jerry

Dear Jerry,

Thanks so much for your prompt and insightful response. I have needed to hear from someone knowledgeable. Yes, it is unsettling to know that I lived with the cancer in my mouth much longer than necessary, and even that it was disturbed by cauterization not once, but twice, and was still not recognized or suspected. This is, legally, "failure to diagnose," but I have decided not to pursue anything legally, choosing instead to focus on positives instead of expending that sort of energy on such a negative activity as a lawsuit.

I guess I will go with the metal obturator. I am a teacher and a singer, and, while people say that I sound fine, I am often asked to repeat things, so I know that I am not being understood as well as I would like to be.

I also have a nasality to my speech that I plan to work on with a speech therapist, after I get my more definitive obturator.

I really don't know what to do about the implants. What you say makes a great deal of sense. First, I have been tempted to have my prosthodontist make another, more definitive device using the wire clamp, just so that I didn't have to have another procedure. I realized just this week that I think that I have been more in denial than I had thought....that if I do something as permanent as the crowns or implants, it means that this is a permanant condition, and I have been avoiding that reality. This IS permanent, and I guess I have to do whatever I have to do to make the best of it.

The first choice for implants would be a pterygoid implant, but I no longer have that bone available. The only other choice is a zygomatic implant..actually two, for stability...I have consulted the guru, Dr. Stephen Perel, at Baylor Dental School in Dallas, and that is what he recommended, but then, it is his field of research and expertise. My own prosthodontist did not even mention the zygomatic implant, but when I asked him about it, he said it might be something to consider.

This is another issue that has been driving me crazy: Why didn't he mention it at first? Why did I have to discover it on my own??? I don't have the confidence that I need to get through this process, either from him or from my surgeon, who has been a little casual about some things, in my opinion, and, of course, from my dentist.

I guess I need to post another query about the implants specifically. I don't want to get into a circumstance where I will have bone pain from such an implant.

You and I are close to the same timing. You are a little ahead of me. Will you have more procedures, or are you finished? Did you have any radiation?

I am a little concerned about not having radiation, since my lesion had been there for so long, but my surgeon says that he was "aggressive" enough to consider that I am cured. I sure do hope he is right!!

Thanks for your help!

--August

Jerry....You mentioned that if money is no object, implants are the most desirable solution for me. I am fortunate to have good insurance, and am also fortunate to have a generous husband with a comfortable income, so that issue is not a limiting factor, thankfully.

I guess I will have to give the implants more consideration.

Have you had to have any speech therapy because of your partial glossectomy? Or were you able, with your own professional training, to adapt your own speech?

Just curious: Did you find your own lesion, or did another dentist discover it?

The area of my lesion had been tender for quite a long time, even before I began going to this dentist. I can't imagine that it was cancer for that long, though the literature no longer gives credence to irritation developing into cancer.

I smoked 37 years ago, in college and shortly afterward, and not since. That seems like a remote causative agent, though my surgeon says that he feels that that long-ago smoking was the cause, rather than genetics, since there is absolutely no cancer in my family.

I was interested in your surgeon believing that long-ago smoking was the cause in your case -- my husband quit more than 20 years ago, and his ENT (at one of the best-known CCCs) says he considers him in the same category as oral cancer patients who have never smoked.

Absent a diagnosis of HPV, I guess we'll never know in cases like these, with no immediate causative factor (such as current tobacco use).

Thanks for your response. I am not surprised about your surgeon's statement about the smoking. I have not had HPV or other viral diagnoses, nor do I have any family history of cancer in any form. My surgeon seemed glad about the long-ago smoking, implying that it somehow was better to think that the localized irritation as a causative factor was more desirable than a strictly genetic cause. However, it seems quite odd to me that such long-ago smoking (37 years ago) could be the cause. You're right.....we'll never know.

August,

I commend you on your decision not to sue your original dentist, but I urge you to try to help that dentist to increase his/her awareness of the importance of early detection. I recently had an article published aimed at educating my profession and to date it has been in one local dental journal and will soon be in our state journal that will be received by 6,000 dentists. I would be happy to send it to you to get to that dentist if you send me your email address. Mine is [email protected].

Sorry, but I don't have any experience with pterygoid or zygomatic implants personally, just maxillary and madibular ones. I have seen slides of cases with the zygomatic ones and it seems that this would be a great stabilizing factor.

Regarding your question about your prosthodontist not mentioning the zygomatic implants, you have to realize that there are many levels of expertise, even within the specialties. I have to assume the he/she knows about these implants, but perhaps has never used them. You are doing a good job being your own advocate in this process and it is apparent that you have done a great deal of research on the subject. If your prosthodontist does their own implants and you want to use him/her for the obturator, then perhaps they can have the implants done by someone else. If the confidence is gone completely, then it might be best to start looking for someone else.

As far as dental insurance is concerned, there are more and more insurance plans starting to cover implants, but there many that don't. It's great that you would still be able to do it, even if not covered.

As far as my situation is concerned, I did not have radiation or chemo. One of the handful of posters in that situation. I really can't comment about the need in your situation as it is not similar to mine, at all. A second opinion might help to put your mind at ease.

I did have speech therapy for several weeks after the surgery. I was back to normal rather quickly and unfortunately, even retained my "Brooklyn Accent". I did discover my lesion myself, but to be honest, neither my oral surgeon who did the biopsy nor myself, thought it was cancer. I was floored by the biopsy report. I had not smoked in 41 years when I developed my ssc. My surgeon and I don't consider that to be a factor in any way. There is no cancer in my family. Like Leslie, I can't agree with your surgeon either.

I hope this has been helpful and look forward to getting your email address. Please keep me posted as things progress and if you have other questions, I hope I can help.

Jerry