Hi there, I haven't visited the board for some time, as my hubby was doing so well...until now. Initially he was diagnosed with cancer in his neck (secondary). He had a radical neck dissection, had 36 lymph nodes removed, his jugular vein, saliva gland, neck muscle. Cancer showed in only one lymph node. While the doc was doing the op he went searching for the primary which had not shown on any of the scans. He did a biopsy of the base of his tongue and it was pre-cancerous. His surgery was in March 2005. He commenced radiation in May 2005 - 33 sessions - No chemo. (we do it differently in Australia for some reason). He was going extremely well, lost 22kg, but put on 11kg since, didn't have to have a peg tube. Now 18 months later the primary has presented itself as an ugly ulcer at the base of his tongue. The surgeons are talking about removing part of his tongue, part or all of his larynx, the flap that stops food from going down into the lungs. I wonder if anyone else has had a similar operation, and the results. We've been told chemo would only be palative action. Any help would be extremely appreciated. Does anyone think there is another option. He can't have any more radiation as he is fully radiated. Please, please help.
Sue

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

Hi Susie,
Sorry I missed your post before. I had a total laryngectomy and left neck dissection in August 2001 at Univ. of Penna hospital. Surgery was also my only option as I had had 36 rad treatments in 1997 for an unknown primary. I can actually eat much better since the surgery since I no longer choke on food and nothing can go down the wrong pipe. My voice box was removed but I have a TEP and speak very well. I had no tongue involvement. My tumor was on the larynx. I was lucky and they didn't have to take any veins from my arm as I have no flap. While I can no longer go swimming or sing, the surgery hasn't had any real impact on my normal life, but mine was quite successful. I know several people with failed TEPs. If I were given a choice between a partail and never eating again or a total and being able to eat, I would opt for the later, but everyone and every operation is different. It might be a question you want to ask the doctor. He may not know exactly what he has to remove until he gets in there to do it.

Take care,
Eileen