Previous Thread
Next Thread
Print Thread
Page 1 of 3 1 2 3
#126553 12-20-2010 02:33 PM
Joined: Mar 2010
Posts: 20
Member
OP Offline
Member

Joined: Mar 2010
Posts: 20
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?


Squamous cell, tongue
First biopsy 2006, Stage 1 2008, 2010, 2012, 2013
To date: 13 surgeries & 3 nonsurgical biopsies
Joined: Jan 2009
Posts: 1,844
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
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


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
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.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
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.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
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.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Joined: Mar 2010
Posts: 20
Member
OP Offline
Member

Joined: Mar 2010
Posts: 20
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.


Squamous cell, tongue
First biopsy 2006, Stage 1 2008, 2010, 2012, 2013
To date: 13 surgeries & 3 nonsurgical biopsies
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
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.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Joined: Mar 2010
Posts: 20
Member
OP Offline
Member

Joined: Mar 2010
Posts: 20
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.


Squamous cell, tongue
First biopsy 2006, Stage 1 2008, 2010, 2012, 2013
To date: 13 surgeries & 3 nonsurgical biopsies
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
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


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: May 2006
Posts: 720
Likes: 1
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2006
Posts: 720
Likes: 1


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
Page 1 of 3 1 2 3

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5