Today My husband's PET scan shows cancer at base of tongue with mets to two lymph nodes. He had tonsil cancer, squamous cell, with mets to lymph nodes in 2001. Had neck dissection and rads. Cancer in tongue (ssc again) in 2013, no mets. 25% of tongue removed. This time recuperation from surgery will include learning how to speak and learning how to swallow. Dr. will make flap for throat from hand skin. Says will take a lot of determination to learn to swallow. Vocal cords are not involved.

My question to anyone who has experienced this. How long did it take you to recuperate, learn how to speak and swallow again? Any suggestions about blended diets would be helpful.

Thank you, Sheryl

Im very sorry to read your husband has had a recurrence! This type of surgery can have a long recovery time frame with lots of speech and physical therapy. Much will depend on his frame of mind as far as how dedicated and motivated he is to practicing speech and swallowing techniques. Its not easy but with hard work he can make progress. Im sure there are others who have been thru similar things that will come along. Check the food/menu's section for some helpful ideas. Wishing you both all the very best with everything!

Hello Sheryl, I'm not sure exactly what type of surgery your husband is going to have, but I did want to tell you our story - a brief version.
Kris had a recurrence in Feb 2012, again of his base of tongue tumour. He had long complicated surgery. Part of this involved a total Glossectomy with reconstruction of his pharynx. He talks and
swallows all his nutrition, although he will only swallow liquids.
I will say that the first 3 months postop were difficult. It was a long slow recovery physically. He needed a lot of physiotherapy from the bilateral radical neck dissection he also had at this time. Lifting arms, turning his head and the like. He needed a lot of assistance the first 3 months and then it gradually lessened.
Kris started swallowing in the 3rd week postop. Started with tiny amounts via a syringe, 10mls. He basically tips fluid into his mouth, tips his head back and swallows. The SLT doesn't know how patients like Kris do this. He very quickly progressed to swallowing all his nutrition within 2 weeks. He has a PEG , but has not used this now for over 2 years - scared to have it removed. I think everyone is different and you will just have to see how your husband goes. Your role will be to just encourage him all the way.
A Christine says , there are plenty of posts about nutrition if you want to look them up. Kris still uses an Ensure like product as a base. He makes lots of fruit smoothies using full cream milk, full fat yoghurt, icecream and lots of thick cream. Incidentally his cholesterol levels are perfect for the first time in 20 years. He also uses a Vitamix to blend soups. He has maintained his weight now for the last 2 years.
I hope this helps you somewhat .
Tammy

Thank you. This is a hard one. I'm not sure Charles has the will to make it through it. He is 70 but in otherwise good health. Will follow up later.

What surgery did they say they were going to do re the BOT?

Remove diseased tissue at base of tongue and remove lymph nodes. But it's been our experience the dr always takes more than we thought he would. We do have an excellent dr at an excellent facility in Winston-Salem, NC.

We had a long talk. I really don't think he has the will to make it thru recovery.

Sheryl

And reconstruct the flap that makes it possible to swallow . . . which does indicate the dr will take more. Sheryl

The surgery is actually not a bad recovery - it's far easier than radiation. Hugs my dear.

Charles came through radiation really well. But he is choosing not to have surgery on his tongue again. Yikes. Frightening. Anyone else made a choice like this?

This is a choice about life, or death.
If I understand correctly, his radiation was in 2001.
He now has a recurrence at the BOT.
When Kris had his recurrence and was told that he would need both a total Glossectomy and a total Laryngectomy etc etc. His initial reaction was that he would not do such surgery. His initial reaction was one of shock at what he would lose and fear at what his life would be like post operatively. I think Charles needs to discuss this further with his surgeons to really understand what is involved in the surgery and also to really understand the choice he is making by refusing surgery.
Of course it is natural to be concerned at what life will be like after this surgery. But what will it be like if he does not have the surgery?
We were told Kris would have a most unpleasant death within 12 months should he not go ahead. 2 and 1/2 years later he is well and happy . Life is good. Different. But good.
Please feel free to PM me if I can assist you both further.
Tammy