I was recently diagnosed with tongue cancer, I'm not going to do radiation or chemo because I don't want to loose any more of my memory.
I don't want them to cut my tongue because I believe it's on the roof of my mouth and my gums. They did a Ct scan but I want to hear what the surgeon says. See how much he thinks it is.
I'd like to know does the cancer make your neck ooze ?
I have so many questions and no one to talk to?

Welcome to the forum. I am sorry that you have to join this circle of friends.

When are you seeing your surgeon? Have you considered getting a second opinion after seeing the surgeon? It may help you make up your mind about the kind of treatment that will best help you deal with the cancer.

Draw up a list of questions that you want to ask and bring it with you when you see the surgeon. Your doctors are the best source of answers for any medical questions you may have. You can also consider bringing a family member or a friend to the meeting. He/she can take notes so that you don't forget what the doctor says because consultations with doctors can be overwhelming.

Until you get to see the surgeon, my suggestion is to stop checking in with Dr. Google. A lot of information on unmonitored sites on the internet is not helpful. On the OCF main site, which is monitored and the information vetted, you may find some of the answers to your questions.

Leila,

I think you should take a few minutes to create a list of reasonable and rational questions for the ENT or whomever is coordinating your care. Please don't go into this with the attitude of "I won't because...." Keep an open mind about what is being said and get a second opinion, if possible. A positive attitude will go a long way in helping your long term health and becoming cancer free.

You are about to receive a large amount of detailed information from your surgeons and oncologists. Bring someone along with you to write down what you're being told. Information is key to your decision making abilities. If a term is used that you're not familiar with, ask them to explain in greater detail. (For example, a partial resection of the tongue is not the same as a hemi or full glossectomy.) Do some advance work. Look up head and neck anatomies and try to get a sense of how the various systems work together. At the very least, learn the anatomical terms.

The people associated with these forums have all either gone through the surgeries and treatments or have supported their loved ones as they worked their way through. Please understand that the questions you ask will be answered truthfully and candidly. (You may not agree with the response, or not want to follow the advice, but its information provided through experience.)

Stay Calm, Be thoughtful and respectful with your questions. Good Luck and keep us posted as to your progress

How long does it take to get where I won't be able to swallow?
Now I'm drinking slushes to keep the swelling down and every once in awhile I notice it's a little hard to swallow.
I'm just curious to how long before I really start to have trouble?
I hope I get to see the surgeon soon .
How long does it take for the tongue to heal?
I've read so many that have strokes after fighting ?

Leila,

It all depends on your situation - location of cancer and treatment.

My cancer was on the lateral side of my tongue (the mobile part) near my molars. I had multiple surgeries in the same location over the years and had radiation to my tongue, jaw and side of neck (did not radiate the inside/throat). I really never had much trouble swallowing - my problem was and still is chewing and manuvering the food in my mouth. After each surgery and radiation my tongue was very swollen and painful. Radiation caused many sores to develope in the area that was radiated. There are many medications that can help with the pain, and other mediacaitons that help sooth the mouth sores. With surgery, each day after surgery gets a little better. With radiation, each day gets a little worse and will continue to get worse until a few weeks after the radiation ends.

The only know cure for oral cancer is surgery (remove the cancer) and/or radiation. Chemotherapy is often given with radiation to help it work better. Now there are many new drugs out there since when I was treated, so this may not be totally true - your doctors can better answer what is the best treatment for you.

Make a list of questions to ask your doctor. Bring someone with you to take notes. Some doctors will allow you to record the discussion. I also would bring a detailed diagram of the head and neck area with me so the doctor could mark the areas affected. You can use Dr. Google to search for a diagram.

All of your questions are best answered by your surgeon and / or oncologists. The quick answer is that once you know what your course of treatment is, this forum can better respond to your concerns.

Treatment and subsequent reaction / responses to the treatments vary somewhat from person to person. But its all based on what the treatment entails.

Do you have an appointment with an ENT specializing in the treatment of head and neck cancers?

Has a date been set for CT / PET Scans?

Have you talked with the ENT office to verify any details needed to be addressed prior to you next appointment?

Is your health coverage in order and aware of the diagnosis?

Have you set up a support network of people to help with the day to day issues while you deal with becoming cancer free?

These are what you need to address now.

Leila, your questions are not easy to answer. There are so many variables and being this is done over the internet makes it so difficult to reply with anything other than a general answer. Adding your signature would help us tremendously. This will give us a brief history of your situation and timeline so we can respond appropriately. Detailed instructions are in your PM I sent you a while ago. I also suggest taking all your questions to your doctors and asking them their professional opinion on everything.

Best wishes with everything!