I first was diagnosed with pre cancer in 2005, and cancer in 2007 or 2008. I had a great ENT whom I liked and trusted. He had to go take care of his National Guard duties, which made me respect him even more. When he left I was referred to the head of the ENT clinic. I never felt comfortable with this doctor but thought, this will only be temporary and he is the head of the department. The last two biopsy's have left me with jaw bone migrating through my gums. We were able to get the bone fragment the first time and the biopsy on that was Ostio Mylitis. I asked him why he was taking tissue from my mandible when my tumor is in the base of my tongue, and he looked at me with his blank look and said he did biopsy my tongue. This left my mind numb and I was unable to ask any further questions. My dentist last Thursday informed me that I still, 3 months later, have a hole in my gums. I am trying to get back under the care of my old trusted ENT but it is taking some time. I have an appointment to see my current untrusted ENT on Monday. I have not been able to find out if there is any malpractice involved. I am not looking to sue, but want the best care I can get. Some background information on me:
43 yo male, squamous cell stage 1 base of tongue. I have had excisions twice in the last 2-3 years. I have been HIV positive since 1991 and AIDS for about 10 years. The HIV health is pretty much managed. I also have early stage emphysema, major depression, anxiety disorder, managed and doing well.
I am on the fence as to go to my appointment on Monday or just cancel and wait to get back under the care of my previous ENT. I know the risk of not following through on care but have absolutely no trust in this doctor.
Please let me hear your thoughts on my situation so that I might better be able to make my decisions. Thank you, Anthony

So I saw my surgeon today and he is referring me to an oral surgeon and said they may have to remove the underside of my mandible then sew me up. In his letter he gave to me for the oral surgeon he says the bone fragment which came out of my gums suggests osteomyelitis, he had told me he biopsied it and this was the findings.

Has anyone else had anything similar to this? What was the treatment? How common might this be?

What you will commonly hear asked from the "veterans" on these boards is "have you been to a CCC?". Give yourself the best chance of survival and make sure you are getting the "best" possible medical care available to you...not just the one that you "like".

I "love" my ENT...and the reason I love him is because he was smart enough to understand that if I was going to have a chance at life, he was going to have to refer me to someone better then he was. All Dr's are not created equal, all medical facilities aren't either. Being that you have other health issues, it just makes sense to make sure you are getting world class care.

Good luck

Eric

HIV positive patients and transplant patients have the commonality of a suppressed immune system. In both groups we see heavy involvement of the HPV16 virus which is oncogenic and is attracted to the base of the tongue and to the tonsils. There are lots of red flags here.

You need to be seeing someone at a comprehensive cancer centers where you will have a compete team of doctors looking at you, deciding what's what, and together coming up with the best multidisciplinary treatment individualized for you possible. Seeking out a single ENT for all the answers, when they come from a singular perspective, and you are in this situation will likely not yield the best results for you. You need to get serious about a different approach. You will have compromises in your treatment that many here not had to deal with, and with that working against you, you should seek out the best team you can get to.

My jaw bone is thru my lower jaw and I sure pray they can get to yours and fix it real soon. Christine has lost hers as has Charm and now I have to do the same. Makes you sick to look into your own mouth and see so much dead brownish jaw bone and no flesh. Kisten to eric and Brian and do as they say. Goos luck and many prayers for you.

I had Osteomyelitis (bone infection), in the long bones, when I was in Kindergarden. I remember being bedridden for a long time and the doctor coming by regularly to inject me with penicillin. I was almost rejected from military service as a result. They waived it since there was no apparent long term damage. It's not that common in adults.

From the Mayo clinic site "Skin cancer. If your osteomyelitis has resulted in an open sore that is draining pus, the surrounding skin is at higher risk of developing squamous cell cancer."

I would have to chime in with Brian and everyone else that, given your adverse health history, you would be better served at a Comprehensive Cancer Center and with a medical team that you can trust.

Thank you all for your input, a wealth of useful information, even/especially the nasty reality of it all. I do not believe in the sugar coating of information and I really value the rawness of your responses. I am going to look into the possibility of a CCCC, I just hope my insurance will cover this place. I had been avoiding them as they are not geographically conveniently located near me but realized that I just need to do it anyways.

Your chances of survival will be much improved at a CCC - well worth the extra travel time. Many CCC's understand this as well and have housing avialable for patients and their families.

I was fortunate that I only had to travel 60 miles/day during treatment. Eight years later I am still here to tell about it.

Well, I found out yesterday that my insurance will not allow me to go to Cancer Treatment Centers of America, so...I will look into the other centers in the Phoenix area.

Actually your insurance company is doing you a very big favor.
Cancer Treatment Centers of America (CTCA) are NOT CCCs, or comprehensive Cancer centers. That designation is reserved for real medical institutions that don't offer "naturopathic" medicine or spend amazing amounts of money on advertising to lure in desperate patients.
Here is the best description of Cancer Treatment Centers of America I have read from the Science Based Medicine site:
[quote]As a science-based physician and surgeon I really detest CTCA because it is expert at combining state-of-the-art science-based medicine with pseudoscience like naturopathy, chiropractic, and acupuncture, as well as scientifically tested modalities known not to be particularly helpful in the clinical management of cancer, such as chemotherapy resistance testing (which could be the topic of an entire post). Suffice it to say that the last of these was prominently featured in Suzanne Somers� cancer book last year. In any case, CTCA covers a continuum from the boringly �conventional� (traditional surgery, chemotherapy, and radiation) to the questionable (chemotherapy resistance testing), to pure pseudoscience (naturopathy, acupuncture, homeopathy) mixing them together to the point where it is impossible for the average consumer to know which is science-based and which is not.[/quote]
I don't how people like the CTCA folk sleep at night.
Charm

CCCs, listed by state: http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

The Mayo Clinic (which is a CCC) has a center in the Phoenix area: http://mayoresearch.mayo.edu/mayo/research/cancercenter/index.cfm