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

Thank you both for your input. I do disagree with the designation of pseudoscience for the non current medical yada, yada, yada. It is like the USA saying marijuana is not medically proven just because our country refused to research it and totally through out the 5000 years of use from other cultures. I have benefited from acupuncture for various issues in the past, and while it may not be proven to directly improve our cancer, it certainly would/could help with the other aspects of our lives that are both affected by our cancer and affect our cancer. This is my personal belief and in no way do I intend to disrespect your opinion.

Antholscher

After re-reading that portion of doctor's quote I posted
[quote]pure pseudoscience (naturopathy, acupuncture, homeopathy)[/quote] , I heartily agree with you that acupuncture should not have been lumped in with naturopathy or homeopathy. Of course your on point analogy to marijuana rings very true for acupuncture. Plus my prosthodontist who is all science with zero tolerance for humbug like homeopathy has had many patients whom he has referred to acupuncture in order to help with dry mouth after cancer. He said it's about 50% success rate.
Thanks for calling my attention to that, I was just taking one section out of a long article on CCAs and should have caught that "error". Acupuncture has thousands of years of proof documented back as early at 2BC while homeopathy was ginned up at the dawn of the 19th century (1796)in Germany and naturopathy made up at the dawn of the 20th century (1895)
Of course, these are indeed my personal opinions and beliefs. I only object when OCF posters decided to forego radiation or chemo or surgery for "non medical" TX. My understanding is that the most honest and caring practitioners of both naturopathy and homeopathy refuse to treat cancer patients unless they are also getting real medical TX also. I know my chiropractor was quite adamant that anybody who told me not to get radiation or chemo but rely upon their "medicine" was a complete fraud and dangerous.
Thanks for your courteous correction
Charm

I'm trying to do my part in helping the USA research the medicinal purposes of marijuana. I'm so committed to it that I've been doing an independant study on it for about a year...I'm going to try and publish the results as soon as I stop eating everything in sight and can stop laughing long enough to type it up

CTCA has been the subject of federal investigations and fines

ALL cancer patients should read this in it's entirety: http://www.quackwatch.com/00AboutQuackwatch/altseek.html

and about CTCA specifically: http://www.quackwatch.com/02ConsumerProtection/FTCActions/ctca.html

Eric,

Your comment made me laugh out loud!! Thanks!

Made me laugh, too, Eric! When you publish your research, I can say "I knew you when"!

I am glad you didn't take it personally as that was not my intention. I do believe in modern medicine, but also believe in ancient methods. We would not be here if our ancestors did not have healing skills. But with modern advances, many of which have given us our new diseases, etc., modern medicine is necessary, and older techniques can be of great benefit to us in other ways.

Oh, and I am loving this site and all the responses/advice/opinions being expressed here.

Gary, I have completely removed CTCA from my list of possibilities. Too bad that so many might end up in dire straights from them.

Eric, All laughing aside, I have been doing my part for more years than I will admit to. I saw first hand in 1995 the positive effects MMJ has on individuals. My partner got Kaposi's Sarcoma, AIDS related cancer, did the chemo thing and could not get out of bed without a joint and a half. It is a miracle plant.

But, yes, I do enjoy the "side effects" of the plant too. Thankfully we just passed MMJ here in Arizona, so soon I will not have to live as a criminal to do what is helpful for me!!!!!

I'm not so sure I agree with the "ancient" methods our ancestors used. Operations without anesthesia, sawing peoples legs off (without much more than a bite block), etc. There's a reason why the life spans are so long now (and getting longer) and it has very little to do with ancient medicine. Even when the Social Security Act was passed they didn't really expect many people to live long enough to collect it. So even in our lifetime we have seen quantum leaps in lifespan improvement, at least in developed countries.

In the late 1800's people routinely died from radiation therapy because they were clueless on shielding, exposure rates, beam collimation, etc. Even Western medicine has had a steep learning curve.

The so-called "ancients" lived a long life if they made it to 40.

Eric, surely you will (ahem) share some of your research with us ;-)

I hope this message finds you doing better!!!

I just had the third cancer tumor removed 12/26/13. After the second occurrence we determined it was HPV. This surgery seems to be so much more painful, waking me up in the middle of my sleep crying.

Thank you, I am pretty much healed from it. Unfortunately I will be back in 2 months for the next one. Biopsy results suggest invasion.

This concerns me. If it is cancer simple excision is okay once or twice, but if it is still there, I wouldn't be waiting 2 months for anything. Even a small cancer can be aggressive, if it's invasive you've upped the risk. For every day a cancer exists there is the potential for it to spread to the lymphnodes (and at microscopic levels cancer cannot be detected on a scan. Once it reaches the nodes it becomes a higher stage and much more dangerous. I would seriously consider getting a second opinion.

best of luck.

I 2nd what Cheyrl said. 12 surgeries, no chemo, radiation, PET/CT or other scans, pandendoscopy of the upper aerodigestive tract, biopsies of that area, and HPV positive? The primary could also be in the BOT, tonsil, which is the oropharynx, and metastised to the tongue. Good luck.