Hi Susie,
My name is Doreen and I also haven't been on in some time. My husband, Lee had a T4N0M0 base of tongue tumor w/ epiglottis involvement. In 4/05 he had a total glossectomy, partial laryngectomy, and radical neck dissection. He also had had previous neck radiation for tonsillar lymphoma in 1996, so surgery was his only real option. We were also told that chemo was not a curative option, as this cancer does not really respond to chemo. We reated at Univ. Of Penna and had also received 2nd opinion at Sloan Kettering, who agreed. He was able to have some radiation after the surgery, but would not have been able to have enough as a stand alone treatment w/o the surgery.
He has been cancer-free since the surgery, even though his initial prognosos was very poor. They removed 64 nodes, all of which were negative, and got clear(one close) margins. He does not eat or drink anything by mouth and has a trach, but leads a very full life. We have a 7 year old son and are all happy to be here together. Life is certainly different and I won't say it wasn't a horriffic experience, but we made it through. Lee had a partial(supraglottic) laryngectomy, so he has his vocal cords and can speak, although w/o a tongue at all, ther are some clarity issues, but we understand about 80%. I hope I haven't scared you(as if you could be more scared) but I'm happy to share our expeiences w/ you if it helps. There doesn'seem to be a lot w/ this combination od surgeries, and I know it would have helped me. The surgery that Lee has does have radical long term and permanent quality of life issues, but as I said he is here, and we are together. Please let me know if you would like more info.
God Bless you both.
Doreen