Hello everyone. My name is Melanie. I just found this website and registered. I am 33 years old and have had 2 cancer removals from the left side of my tongue since 2001. I have had an ongoing lesion of the left side of my tongue since approximately 1999. After my last surgery in 2004, I had hoped that the lesions would cease, but a new one developed over the past few months. I recently went to a hospital in TX and will now be in a clinical trial. I am hoping for some progress. I met a lady while I was there and she has had this condition for 30 years! I realized that I need to speak with more people and get involved in a support group. Before meeting her, I had never met anybody with tongue cancer. I hope to gain some insight from everyone here. I wish you all well.
Melanie,
Welcome to the site. I've been posting for only a few months and I've found this site to be both supportive and informative. There are a lot of great people involved with this forum. Good luck in your treatments. We're all behind you.
John
Melanie, not only will you gain insight, you will gain many friends and hopefully some comfort that you do not have to deal with this alone. Please keep posting and share what you are learning too. Amy
Welcome Melanie...
Good luck in Texas..
Darrell
Hello Melanie and welcome.
Lots of luck with the treatment, folks like you help make things better for everyone.
Take Care
Marica
Thank you everyone for responding and sharing with me. I really appreciate it! I do have a question and need some guidance... Since 2001 when I had my first cancer removal, I have never had a CT scan of my head/neck. The doctors have never done this (as I understand it) because my tongue cancer was only 2 millimeters deep so it is considered non-invasive. I keep feeling like I should have this done, but maybe I am just being paranoid. Is this something I should ask the doctor to do? I am concerned simply because I have had 2 cancer removals and an ongoing lesion. Thanks for your input!
Melanie,
Have you been to a major cancer center, or just a local hospital? In a situation such as yours, where you've dealt with this more than once, it's really important to get the advice and treatment from oncology professionals who know surgery, radiation and chemo. In the "Other Resources" section of this site, you can find a list of the comprehensive cancer centers around the country, in case you need to find a team of specialists who deal with tongue cancers on a regular basis.
Cathy
Hi Cathy,
Thank you for your response! I recently went to a CCC in TX. I went to the head/kneck center and saw a surgeon and an oncologist. They both felt my neck for any lumps. They said a scan wasn't required, but if I wanted to have it done they would order it. I'm constantly going through wondering if cancer is somewhere else, as I am sure most everybody does. I want to have a scan done, but don't know if it is really necessary.
best to err on the side of caution, especially if you've had multiple removals. i'd get the CT.
Melanie,
Where are you going in Texas? There is a great ENT in Omaha that has even written a book about oral cancer. I can't remember his name, though.
Welcome to the neighborhood and certainly if you believe a scan would give you a little peace of mind, push them towards your goal.
Ed