For 5 months I have been suffering with an ulcer in my mouth with a white patch covering. I had also had swelling on the right side of my throat. I went to my general dr. for 2 months who thought what I had was from nerves. She finally sent me to an ENT who I saw 4 times and refused to take a biopsy becauses she thought it looked to inflamed and she also stated that it was not oral cancer. She finally sent me to an allergist-immunologist who thought it was an auto immune disease such as Beschets, or Lupus or Cicatrica Phemphigoid, then he finally sent me to an Oral Surgeon who decided to take a biopsy which showed negative to oral cancer. Two weeks later I had another biopsy where 3 pieces of my tongue were biopsyed it came back showing abnormal cells so at that point I was sent to another ent in the same group as the previous ent. HE read the biopsy and said that the ulcer had to be removed and that it would be a simple procedure. Little did I know the surgery was for almost 3 hours and when I woke up the doc told me I have tongue cancer and that he had to do a radical surgery. I was quite shocked. Healing has been terribly painful. At times it feels like i Have bee stings on my tongue. Can anyone share with me their experiences. I found my doc to be with no compassion which has made me so upset. Thank you . Please e-mail your experiences. [email protected]

Hi, My Cancer was in my jaw not my tongue,my first biopsy was negative for cancer, took a deeper one and got squamous cell carcinoma.What I had has a deceptively benign microscopic appearance.I have referred to this in other posts hoping someone with more medical knowledge would take on the fact that this happens. It just happened to my neighbor who went in with a Stage1 small lump in her breast and they found a second mass and removed 15 lymp nodes.Mark or Brian want to take this on? The shock to you must have been terrible. Being told once is enough, twice is the pits. I have a friend who has been fighting cancer of one type of another for 36 years, he gave me the advice of; Let them do what they have to get rid of it , but you just get on with your life , he says how long will this take , and when can I get going again! He is a brave ole soul. Good Luck to you. gnelson

I had surgery on July 23rd for squamous cell carcinoma of the tongue. I had the sore in my mouth for over 6 months. I finally went to an ENT and he did a biopsy immediately. They went in and lasered my tongue until they got a negative reading. They also went in and removed alot of my lymph nodes to test them. Did they remove and test your lymph nodes to make sure that it has not spread to your lymph nodes? It sounds like you need to find a different Doctor. Compassion is the one thing that helped me through this, that is very important to know that they care about you the patient.

Hi, my name is Rosalie. I recently was diagnosed with oral cancer and I am having a neck disection Tuesday, Nov. 19th. I had my biopsy sent to Sloan Kettering and the agreed with my biopsy from University of Penn. I have a feeling I will be needing support and will look forward to any information that you have to share with me.

Hi Rosalie:

You can get through a neck dissection and we folks here can help. My partner,Dave, just had one on 9/16 for tonsillar cancer and did very well post-op. Feel free to post your questions here or e-mail at [email protected]. Will be glad to try to help.

Best,

Kim