I just found this message board and everyone out there who has been diagnosed with any type of base of tongue, tonsillar or oropharyngeal cancer should immediately call Dr. Gregory Weinstein, Co-Chair of Head and Neck Surgery and the Department of Otorhinolayngology at the University of Pennsylvania in Philadelphia. His office number is 215-349-5390. I am a RN, who received her degree from Johns Hopkins, and, unfortunately, I am now a "lay" expert on SCC of the head and neck.
On October 16, 2006, my 59 year old husband was told he had a good size squamous cell tumor at the base of his tongue. The usual treatment for this very aggressive cancer is either to split your jaw open to get at the base of the tongue so the tumor can be resected, or, because that surgery is SO barbaric (required 3 years of reconstructive work), most patients are usually sent for chemo and radiation. As many of you know, especially for base of tongue and tonsillar SCC, the 5 year survival rate is not great
Although I have hi-up connections to Sloan Memorial, the Dana Farber and other top flight cancer centers, we went to Penn because Dr. Weinstein (and his co-Chair, Dr. Bert O'Malley) is the ONLY ONE IN THE WORLD who has adapted the Da Vinci Robot to perform resections of this type of cancer through the mouth without any scars or visible signs of having had the surgery. The surgery took about 3 hours and my husband was in the hospital for about 5 days.
What Drs. Weinstein and O'Malley have done is to specially adapt this robot so that its 4 arms fit in the mouth of patients. They can see much better using the robot's microscopes and therefore, get much better results than the regular surgery (called a mandibulotomy). Their clinical results have been outstanding!
So, my husband is now 19 months post op--he had a good size tumor and one positive lymph node (making him a Stage III A) and was patient #75 in a clinical trial. Dr. Weinstein removed the lymph nodes in my husband's neck in a second surgery (3 weeks later) and he has been clean ever since. No tumor recurrance, no radiation, no chemo. He has no difficulty swallowing and although he has lost alot of taste, it is very slowly returning.
Also, you all should know that there is a rash of SCC head and neck cancers being diagnosed in people who are not heavy smokers and drinkers. Many of these cancers are HPV-16 (Human Papilloma Virus) positive--this is the same virus that causes cervical cancer. My husband was not a smoker and did drink, but not heavily. His tumor was HPV-16 positive. Some early clinical trials at John Hopkins and in Germany are suggesting that HPV-16+ cancers are not quite as badd as the regular SCC and actually are more sensitive to radiation and chemo. But head and neck radiation is hell and to be avoided whenever possible.
So there is my story--a bit simplified, but true. I am here as a support person to answer any questions, or just to offer support. This is a devastating illness, but not many people know about the work being done at Penn and I do hope this has been a help.
God Bless you all and stay strong. You can email me if you want mor info.