Hi,

I have been registered for awhile but didn't really feel that I needed a support group until now.

In Oct. 2005 my dentist noticed a spot on my tongue and told me, if it didn't go away, I should have a biopsy. He meant if it didn't go away in two weeks but I let it go. Back at the dentist May 2007 he absolutely insisted that I go for a biopsy but reassured me that I did not fit the profile for oral cancer. I eventually made an appointment at the office of a recommended local ENT for biopsy in Nov. 2006, still absolutely positive that I couldn't have oral cancer. We call that ENT The Wizard because it was so hard to get to see him.

My biopsy was done by a PA who worked in the ENT's office and it was a horrible and painful experience. A week later I went back for the results and talked to a different PA who told me it was only dysplasia but the ENT wanted to remove 1/4 of my tongue anyway and then he told me every possible horrible complication that could occur and every frightening, barbaric thing that the doctor might even possibly conceive of doing. The ENT dropped in for a minute right at the end to introduce himself and to let me know that getting a second opinon would be stupid. I left the office totally in shock.

The next week I made an appointment for a second opinion. The second opinion wasn't much different from the first but the second ENT was less frightening. So the second ENT removed the tip and whole left edge of my tongue which turned out to be positive for SCC but he got clear margins. I had three very small painful sores on the underside of my tongue and the floor of my mouth that he planned to remove at a later date. A PET/CT scan on Mar. 6, 2007, showed only hot spots caused by calcium deposits unrelated to the cancer. Within two weeks the smaller sores suddenly became much larger and I was scheduled for surgery to remove them Mar. 2007. They were SCC. I was able to swallow a bit of water immediately and to talk within two weeks after each surgery but I lost 30 pounds while my tongue healed. A PET/CT scan July 2007 showed nothing new. My ENT retired and told me not to worry. He reassured me that if my cancer came back in 5 or 10 years there would be bright young doctors and new technology.

Not even a year later we found a new sore on the left side of my mouth at the interesection of my tongue and gums. It did not show up on a May 9, 2008, PET/CT scan but the biopsy was positive for SCC. Surgery to remove the sore on May 23 ended without getting clear margins. The ENT says that the next step is to pull the teeth on the lower left, remove more tissue and do a biopsy on the mandible. Now I am absolutely terrified.

If I were you I would run ASAP to the nearest Comprehensive Cancer Center, like Sloan, and get evaluated by their Head and Neck Department. I would not let another ENT pull any teeth or do anymore surgery on me.

You need a multidisciplinary approach to all this. These doctors are a one note song. Surgery, and if needed more surgery. Bottom line is you are in a place where this likely needs to be treated with more than this one medium. A comprehensive cancer center will give you a real plan that will hopefully irradicate this once and for all. It may include radiation and more, but at the end of it you will have the best chance for a long and healthy life. The combination of delays on your part, and incomplete treatments on those of the people you have been working with have put you in a less than desirable position. Get to a place where experts can pick up the pieces from here. You only get so may chances to do this right, it is a very unforgiving disease.

Tinkerbell, go directly to a CCC ASAP, yesterday, please. You need a team to evaluate and treat very AGRESSIVLY. Linda

You will feel sooooo much better when you KNOW that you are getting the best advice there is. I see that you are in NY....my goodness, you are in an area where you have many wonderful options. Please, please make an appointment. These recurrences/new primaries need a team approach, not a piece-meal approach by different doctors not specializing in cancer. Let them know your history, and that you currently have diagnosed recurring SCC that needs treatment. I am betting that you won't have to wait as long for this appointment as for one with your ENT.

Are you in NY City? If so, there are indeed lots of places you czn go where you will get a team approach to your cancer the best option probably being Sloan Kettering (in terms of national rankings). I am in upstate NY where there are not many options close by. If you live there, there is Roswell Park which is a CCC in Buffalo, and other hospitals in Rochester, Syracuse and Albany that are not CCCs but do have tumor boards and will use a team approach to your cancer. There's also the Robert Packer hosptial in Sayre, PA (just over the state line) which might be closer. Whereever you are, PLEASE take this advice and go somewhere where there is a team experienced in treating oral cancer.

Nelie

As everyone has stated above, get to a CCC. I can't believe your first ENT surgeon said that if it came back in 5 or 10 years there would be bright young doctors and new technology. This is a very aggressive cancer that often times doesn't give one a lot of time to battle it. My sister had 4 surgeries over a 2 year period, and declined the radiation that was recommended. She eventually had to undergo radiation and chemo because more surgery was not an option. As you know the radiation treatment is a extremely tough for most to get through, but if it's your best bet to beat this monster, then is there really no choice. Just get an opinion from a team of experts in this field and my best to you.

Nancy

Tinkerbell

I am in NY as well Upstate. And I agree with the CCC. I had my surgery done by a local , But I consulted with Dana Farber in Boston as I have family there. My Drs also consulted with Sloan. The Ent's in this area I am finding arent very aware of alot . I love my ENT now .. but this area isnt really up on it . Please let me know where you are and if I can do anything to help.

After reading replies to my post I made an appointment at Roswell Park CCC. I just got home from my first visit. I am sorry that I did not come to this forum earlier. The doctors there told me exactly the same thing that you did and, because of my earlier surgeries, some options I might have had before are closed to me now.

What do the Drs at Roswell Park propose doing? I'm also in Upstate NY and wondering if you are anywhere close to me. Do you live close to Buffalo (in which case you're not all that close)? If you need more treatment, this is an excellent place to get support.

Nelie