Louise,

Welcome to OCF - really sorry you need our help!

As others have said, treatment of oral cancer/tongue can be tricky and it is best to be see at major cancer center where they have treated lots of OC patients. I learned this the hard way having my first 2 surgeries locally before going to Johns Hopkins in Baltimore (one of the best hospitals for H&N cancer in the US).

Radiation therapy is brutal and causes many of us long-term QOL issues. If the tumor is small and has not spread to any lymph nodes, recommended treatment is often surgery alone.

I had surgery at 2 hospitals before having 2 more at Johns Hopkins. One thing that was not done at the first 2 local hospitals was doing "frozen sections" during the surgery to ensure that the cancer is removed with clean margins. Frozen sections is a type of quick biopsy done during surgery to determine if the tissue is malignant or healthy. It is usually used along with a "blue dye" that highlights suspect tissues. You should be able to find better information on this on the OCF main pages.

My tumor was on the right lateral side of the tongue, and only a small part of the tongue was removed. I ended up with RT anyway (long story, and probably unnecessary) nearly a year later. Then 5 years later I had a recurrence (same area) - two more surgeries, and a year later dysplasia (again same area). So as this point I have about 1/3 of the right side of my oral tongue removed.

My speech is pretty normal, but if I talk a lot I have some issues. Eating (moving food around in the mouth) is an issue, but nothing too bad. Most of the eating and swallowing issues I had and still have are because of RT.

Everyone's experience will be different due to the size and location of the tumor, and how much of the tongue needs to be removed.

Besides the main pages of the OCF website, this forum is searchable (use the box in the upper right). Most of the posters include a "signature" which will give you an idea of their diagnosis and treatment, and you can click on their username and read their posts if you want to find out more information of what they went through. I used the search function a lot to find out the answers to many of the questions I had.

Wishing the best for you and your husband!