Hi,

I am a 39 year old male. Other than what I descibe below, I am very healthy, never smoked, drink a glass of wine a few times a week.

Since year 2000 I have been having lesions, white patches on the left side of my tongue. In 2001 it was diagnosed as carcinoma incitu, and I had it promptly removed...about an inch diameter from the side of my tongue.

Every year since then, the pre-cancerous lesions have come back as dysplasia, leukoplakia or lichen planus. I would have that cut out as well...until 2007 it got to the point that this will go on forever, that no matter how many times I have the lesions and white patches removed, they always came back.

So, in January 2007 I followed the recommendation from my oral surgeon to have a radial forearm flap procedure. It was quite radical, took large area from tongue, and floor of mouth and replaced it with tissue from my forearm, lymph nodes removed from the left side of neck. I somewhat regret the procedure, thinking that it may have been overkill, but was told this would be the end of it, no more yearly surgeries...

Like clockwork, a year later, the white patches came back, this time right where the flap attaches to the top of my tongue and also where it attaches to my gums by my back molar. I had the areas removed and the flap was stretched to cover the area, so no big deal.

Again, in 2009 the white patches and painful bleeding lesions were on the outerside of my molar on my gums, basically surrounding the tooth. I took part in a clinical trial with a drug called erlotinib (to prevent dysplastic cells from turning to cancer). Stopped taking a few months ago as it proved to not have helped and had very bad side effects.

Recently, my latest biopsy showed that I have invasive squamous cell carcinoma. I had CT scans done and the good news is that the cancer is isolated to my gums around my back molar on the left side. The tooth is loose. My oral surgeon is wanting to take out the bad area, the loose tooth and the tooth next to it, partial jaw bone underneath the area and a good portion of gum tissue, mouth wall tissue. She wants to reopen the scar in my neck and take out more lymph nodes. Use a trach and have a reconstructive surgeon build up my jawbone using a bone from behind my knee. No mention of replacing my teeth, my surgeons response to that is that my teeth are the least of my worries..

Here is my issue, I don't want to go through an aggressive procedure again, I am just getting my career going again with sales mostly from commission, which means to make a living, support my family and keep the house, I need to be infront of people selling every day without speech impairments or being disfigured (although cruel, sales success is affected by presentation and appearance). I read about the horrors of radiation treatment and I am planning to refuse them. I realize the surgeon's stance of being on the safe side, saving the life is the only concern no matter what the cost...I understand that, but I need to have a quality of life....There has got to be another way, a less invasive way. For example, I am asking the surgeon to just take out the bad area, the cancer is isolated, so why take out good tissue and bone at this point. If it comes back, then we address it at that time. I just dont feel that she is sensitive to having a quality of life after the procedure.

I think radiation treatment is overkill if the area is being removed anyway....Can I insist the surgeon not to do certain things, like not take good tissue and bone out, don't take the lymph nodes out, don't use a trach....Just take out the bad areas only, leave the intact tooth beside the bad tooth etc...What are my options, should I seek another opinion from another surgeon? Am I being a baby about this?...I don't know what to do....Any suggestions would be greatly appreciated.

Thanks,
HGT