Hi Doreen,
I am also fairly new to this site. So far, I have done a lot of searching and no posting. My husband, age 57 (non smoker/non drinker), was diagnosed about this time last year with squamous cell carcinoma on the right side of his tongue. He chose to have radiation and chemo, which he began last September. At one point this seemed to be doing the trick and yet at the end of radiation (2nd half of radiation treatment was with IMRT) it had, in fact, gotten bigger, now covering over half of his tongue. Therefore, in February he had surgery resulting in a total glossectomy with about 27 lymph nodes removed (only one invovled cancer). He had a "tongue" rebuilt using tissue and muscle from his stomach.
The radiation was very hard on him and he has not had solid food since last November and has lost 60 pounds since last year. He was pretty weak and in a lot of pain by the time he had surgery. He came home with a trach and peg tube and though quite uncomfortable was finally out of pain.
The trach was removed about three or four weeks after he came home and he still has the peg tube. We were told that many patients learn to speak after this type of surgery and some learn to swallow. He failed his first swallow study which was done at a local hospital (where our HMO sent us). The doctor stopped it after just a few trys due to silent aspiration. He is going through speech & swallow therapy and physical therapy for his shoulder. We are pushing for the next swallow study to be done at UCLA where they are more familiar with his condition. Our surgeon said that the doctor at the local hospital had probably never seen anyone like him before. It is so important, if you can, to go to major centers where they are familiar with your type of condition.
Overall, he is doing quite well now for all he has been through. His problems are with a very thick saliva, so thick he sometimes feels he is choking on it. He still has quite a bit of swelling. We were told this will last a while due to all the radiation he had - healing is much slower. The swelling shift sometimes depending on how he has slept. He still sleeps mostly sitting up and for short periods (can't get comfortable). He has a new pain recently in his left ear area. Doctor says not uncommon. He is anxious to learn if he can swallow, he hasn't had anything by mouth since the surgery (except for the one swallow study). There are a lot of questions to be answered, there is a lot of answers on this site and it is helpful to know there are a lot of caring people. No one experience is exactly the same. It can be so discouraging and so very frightening at times. Here you are going through this huge thing in your lives and your time with your doctor seems like a flash. Even in the hopital, you sometimes have to remind nurses, etc., "exuse me, but this is our first time, what was that"? I always go to appointments with him with a notebook and questions written down. Doctors have been great but still sometimes they just don't have all the answers for you, a lot of it is just wait and see.
You learn to do what you can when you can. Only three months after the surgery, we took a weekend trip away and a month after that a weeks vacation. We would have never dreamed that we would be doing that in February. We do things differently but we still go out and do, greatful for the life we still have.
I am sorry I don't have an answer for you, maybe someone else will. We are all on a journey to find answers and I wish you both much luck.
Take care.
