Hi Moona,

Welcome to OCF and very sorry you need to be here.

I was diagnosed in 2005 with SCC on my lateral tongue - the oral/mobile part of the tongue. Where is your cancer located - is it in the "oral" part or is it in your "base" of tongue (part of tongue down your throat)? The HPV virus is turning into a leading cause of oral cancer in the throat area (base of tongue, tonsils) and does respond better to radiation and chemo alone. If your cancer is on the mobile part of your tongue, surgery is probably the best option. They may recommend radiation and chemo depending on the results of the surgery.

I had 4 surgeries on my tongue over the years. The first 2 were done at 2 different local hospitals. The last 2 were done at Johns Hopkins in Baltimore (one of the best hospitals in the USA for this type of cancer). At Hopkins they routinely do "frozen sections" during surgery (a type of biopsy) to make sure they "get it all" during surgery - IMO this is critical. This was not done at the local hospitals and both times I had cancer in the margins which complicated the whole process and cause me additional surgery and radiation.

I learned the hard way that where you are treated is very important - you want a doctor/hospital that treats a lot of oral cancer. Over the years I saw 4 different ENT/surgeons, 2 RO, at 5 different hospitals - the recommend treatment was often very different and the quality of treatment also varied greatly.

If life had a "do-over" button, I would have gone to Hopkins from the beginning. Also, I did not find the OCF forum or website until about 6 months after my first surgery. The wealth of information and support you will find here is the best!

Wishing you the best!