My 47 year old husband (non-smoker, non-drinker) has just been diagnosed with stage IV SCC, base of tongue w/mets to bilateral neck lymph nodes. He has been diagnosed by a local ENT and has seen his oncologist and has an appointment with Radiology on Wednesday. The ENT surgeon says he would not recommend surgery because of the position of the tumor at the base of his tongue. He has told me that they would have to take his entire tongue and then you are talking about a whole set of issues including aspiration as well as never being able to speak again! We went to the Mayo Clinic in Rochester, MN for a second opinion and were told that there may be a possibility that they could do surgery and remove a portion of the base of the tongue along with bilateral lymph nodes and then follow up with chemo and RAD. We are worried about disfigurement. Tom is not into losing his tongue. He is not looking forward to the PEG either. I am a nurse and have taken care of people with PEGs so I am not all that concerned about the PEG. I am concerned about his mental state if he can't speak. I am looking for any information regarding this type of surgery esp. personal accounts. We are scheduled to go back to Mayo on Tuesday for an MRI, preop consult and surgeon consult so I need help soon. Thank you.

Cindy,

Hello...my husband was diagnosed with advanced squamous cell carcinoma, base of tongue in November 2002. We were given two treatment options when we went to the Stanford ENT Tumor Board: surgery to remove the tumor w/ a neck dissection (this option involved reconstruction and speech therapy, etc) the other option was to try a chemo/radiation combination first, in hopes that the tumor would shrink in size and make surgery less difficult. We opted for the chemo/radiation plan. My husband's tumor seems to have responded well to the chemo (scan after chemo and before radiation showed no visible tumor). He just finished his radiation treatments a week ago and we will meet with his ENT next week to see what the next step will be. We are probably looking at a radical neck dissection when Jim has recovered somewhat from the radiation treatment. There are many things to be considered, and every patient is diffferent in response to treatment...I wish you the best.

Cindy
I am a nurse too and my husband was diagnosed with the same thing .He just finished chemo and radiation and his last MRI showed the tumor on the base of his tongue and the lymph nodes are gone . He was told that surgury was not the way to go. I quess it really varies by MDs . I am pleased with his results. Although the way to get tjheir is very hard. He likewize was extemely stubborn about the peg tube and lives on Zylocaine viscous and Ensure plus He followed the Drs 6 cans a day and showed such determination It wasamazing. He was hospitalized twice for 5 day straight chemo which really slammed him once for dehydration and then did weekly chemo and daily radiation. With a couple days off when he couldn,t tolerate it. The reason I'm telling you this is because of your husbands concerns. The hardest part of being a nurse in this journey is
letting your husband make his own choses and have control over this. You have to help him research his options and decide . Whatever the results his spirit is crucial for making it and if he has control of something even not getting a peg tube [minor to us but for some reason major to some]
Please look into seeing if the disfigurement is neccessary before he makes that choice. Whatever way he decides I wish you both the best
Diane

I had a stage III 3cm x 5 cm tumor on the tonsil and my Head and Neck surgeon recommended against surgery also. I had 33, IMRT radiation treatments and 2 Cisplatin Chemo treatments. The tumor has completely melted, in a few weeks after beginning treatment actually, and so far my CT's and MRI's have been clear. The tumor was classified as a T3N0M0 with no signs of metastecis. So far, so good. The doctors told me the survival rate would actually be slightly better without surgery because of potential complications (from a 12 hr operation) and the fact that they would have to radiate everything anyway. It was an easy choice for me to make. I did a lot of homework first however. But everybody is different -you must be your own advocate and get the wisdom to make the choice that will give you the best possible outcome.

Update --- I have taken my husband to the Mayo Clinic in Rochester. They have suggested that his best chance is surgery to excise the primary tumor at the base of his tongue and bilateral lymph nodes. They will do this by making an incision from ear to ear (practically) and remove his lymph nodes and from that vantage point remove the tumor at the base of his tongue. They will give him a trach because the swelling will cut of his airway and then slip in a nasogastric tube for feeding. The trach will come out in one week after the swelling goes down and he will remain in the hospital for one week. He will then come home with the NG tube for an additional week. Two weeks later the RAD will begin. We were really conflicted in this decision because noone would give him a greater than 50/50 chance regardless of the type of treatment we persued. Today he saw a radiologist/oncologist who at first said that surgery would not be indicated but changed his position after really reviewing the tests and palpating. He said that Tom's primary site was small enough to be resected with the right surgeon. He thought that if the primary tumor was excised that he would have a much greater chance. So even though the surgery is going to be tremendously difficult given Tom's diabetes, we are going to do this in order to give him optimal chance for survival. Surgery is scheduled for next Thursday. Thank you for all your responses and I will keep you posted as to the results.