Hello. My father had a large tumor removed on the base of his tongue 11 days ago. I don't know how much of the base was removed, as my father doesn't want us to ask alot of questions, but I know it was larger than the surgeon thought it was. I would just like to know if anyone else with a tumor removed on the base of their tongue has had any success with swallowing again. He hasn't had a swallow test because he is afraid to do it. He says he is not ready. He has a trache and can talk fairly well all things considered. Any input would be welcome.
Thanks,
Rett

Rett:

Welcome to OCF. I dont have experience with what you are asking, Im sorry. If I were you, I would ask your fathers doctor about those things. Im sure your father is very sore from the surgery so it is probably really difficult for him to even swallow a sip of water. Does your father have a feeding tube?

A swallow test is something very simple, I have had one of those. For me, it made me kinda nervous since it was so important to me that I was successful with it. A swallow test is important to determine if your father is able to eat. Try to talk to his doctor. Asking questions is a good thing, your dad must be scared of the answers so he doesnt want to ask questions. An informed patient and caregiver is so very very important to his health.

He shouldn't have a swallow test (he will need to do this sooner or later to determine if he has dysphagia or aspirates liquids) until all the healing takes place from the surgery. This might be a couple of months. Anything before this will not accurately reflect his situation. These kinds of surgeries are very individual, and it would be impossible for anyone here to offer good advice on this, as the extent of the surgery is not known. It does sound like he has some other issues that might be emotional, related to his future capabilities. If you can get him on these boards, perhaps talking with others that have been through his situation might make him more comfortable with all that is going on.

Thank you Christine and Brian,
I have been reading these boards for about a week. And you're right Brian, my dad does have a lot of emotional issues going on related to all this. He has been extremely depressed and anxious since the surgery. We have been trying to keep his spirits up but it hasn't been easy. I don't know if he would enter this type of group because he would be afraid of reading something bad about his cancer. He's always been that way. It has been helpful to me though, reading how people have been through tough times. Thank you for responding, it has been a support knowing others have been through similar situations,
Thank you,
Rett
P.S. He meets with his doc in a few days, so hopefully we will get some answers.

I want to thank every single one of you for your words of encouragement and just having someone to talk to that has been through all of this helps tremendously. I am not very computer savvy and sometimes I get a little confused when I want to reply to all you wonderful people. If I don't answer, it's because I need to get more familiar with how this board works. Thanks for your patience. Claudia ----See, this message ended up where it shouldn't have...............oops.

Rett: I know what you are going through with your dad. My husband had 2/3 of his tongue removed on March 18 and still can't swallow. He gets very depressed also. He had a barium swallow test and he did not pass it. (More depression) We live in a small town and since they don't do all the tests that a larger city does, we are going to Pittsburgh on Sept 19. We have an appointment with an E.N.T. doctor who is a speech pathologist and deals with oral cancer patients that can't swallow. They will also run more swallowing tests..I figure maybe this will help. Hang in there and take a day at a time. This whole ordeal has been a nightmare and as the caregiver my heart just breaks. Try to remain positive even though it is very difficult. Love and Prayers are going your way. Claudia

Most of us have had some emotional issues as part of our experience in all this. I would venture to say that anyone who comes close to death, and perhaps for the first time truly believing that they will not be around forever, are profoundly changed by the reality of this simple truth. Many people, even into the late years of their life view death as a very abstract thing, something that always happens to someone else.

For others it is not death itself, but the potential for physical suffering that distresses them. And yet others it is the inability to accept that we may be physically less than we were before in many ways - altering our ability to be self sufficient, work, speak, eat normally, not be stared at by others for our differences.

Whatever the reasons for our fears, there is no shame in needing support, both from friends, family (even a cyber one as here on the boards), or from the chemical aids that we might be prescribed to control anxiety or depression. But for many, particularly men (we can pride ourselves in our ability to tolerate it all, to tough it out, to be stoic through bad times), these are hard realities to embrace. They take time to sort through and come to terms with. Shared experiences whether in a supportive group like this, or in a foxhole when the storm is coming, break down some of the barriers to dealing with that lot which we find ourselves in. Should you convince him to come here, others may give him hope.... that they have danced with the devil and are still around a decade later, that life is again rich, that while they never go away completely, the fears become controllable and manageable.

Thank you again Brian. Your words are very comforting. It has been a very difficult going through this with him.
And good luck to you and your husband, Claudia. I will pray for him that he is able to function better every day. I know how difficult it has been for you. Keep your spirits up.
Thanks again for all the words of support.
Rett

I'd say it was pretty common for folks not to pass the barium swallowing test at first -- I had my first one a couple of weeks ago and passed it except for a lack of cough response when small errant stuf got down as far as my vocal cords -- All of the staff were really enthused that I had done well and the swallowing therapist told me that I was the first success story in a while and they had all been getting disappointed -- I had cheered them up!

While I was still in hospital and had my trach tube open, they had also tried a swallow test by having me eat a variety of textured stuf with blue dye in it -- Then they had a respiration tech induce some coughing (light spray of a saline solution into the open trach) and blue dye started showing up, so I failed that one.

How are you doing Pete? Do you still have your trach in? I hope you are successful with your swallowing. My dad won't even attempt it yet. Good luck with everything. You sound like you're in pretty good spirits!
Rett