We met with Ken's ENT today (on his 44th birthday)and the cancer is still there on the left and right side of the BOT and near his voice box. His Dr. thinks they can save the voicebox but won't know for sure until they get in there. We are shocked and numb at this point. Everyone seems optimistic he will be able to eat and speak (if voicebox is not taken out). I would love to hear from anyone who has dealt with this.

Jill, I am very sorry that Ken is having a recurrence! I know it is a very scary time for your family right now. Im not familiar with the procedure that Ken's doc is recommending, sorry. I just wanted to tell you a second opinion is never a bad idea. There are many top rated cancer centers in the northeast that you could seek out. I will keep Ken, you and your family in my prayers.

Jill,

So sorry to hear this news. Must be quite a shock. I had a total glossectomy and I am still living a very full and happy life. It was a long recovery and rehabilitation road but I have managed to adjust to it and carry on with life. I understand how daunting it is though. Feel free to PM me anytime if you have questions.

KATE

Thank you. Kate, I told Ken about you so I am sure we will be PMing you with questions. You give us hope!

Jill,
I have not had any tongue surgery but did have a total laryngectomy (removal of voice box) and I can still eat and speak. If he lost his voice box, he would have a permanent trach. While I do hope they don't have to do this, I just wanted you to know it does not necessarily mean he won't be able to eat or speak again.

Where is he being treated and are you happy with this surgeon? If not, I would get a second opinion. I wish Ken the best of luck with his surgery.

Take care,
Eileen

Thank you Eileen. We did meet with his speech person as well yesterday to get an idea of what we are looking to deal with. It is amazing how much they can do to help. He is seeing Dr. Emerick at Mass Eye & Ear and really likes him (has been seeing him for a few years). They do the surgery as a team and I think their Director is going to be the other person.

I know your surgery is approaching. Hoping you are feeling better about things. You are in my thoughts and prayers. KATE

We are still in a holding pattern. The PET scan showed nodes around his windpipe that they are going to biopsy tomorrow. Everyone says it would be rare for it to have spread there but his entire case has been a-typical so we don't know what to think. We should get the results the same day at least. If they are clear he will have surgery next week. It is sad to think that we are routing for him to be able to lose his tongue. I am hoping this whole thing with the PET scan is just a way for us to come to terms quicker with the idea of a glossectomy!

Me too hopefully this is just a scare to put everything into perspective!!! As you said not looking forward to losing his tongue obviously - but if hats the only issue then that's the best hoped for - take care... Praying things will go smoothly with no bad surprises. Take care!

So finally a little good news -the biopsy of the nodes near his windpipe we negative for cancer!!! I am sitting in his ENTs office to see if we have a date for surgery while Ken is still in recovery waiting foe a bed.