Hi everyone: I need some help. My husband went for a second opinion today for his throat cancer. He hasn't been able to eat since his surgery June 15. The Dr. that did the surgery said it takes time. Today, the doctor we went to see says that he will probably never eat normally again. I'm so confused and angry that the the Dr. that did the surgery wasn't honest with us. He also did nerve damage to his tongue and that is the contributing factor as to why he won't be able to eat. He had supraglottis carcinoma. Now this second doctor said he should have had radiation and chemo. He only had radiation. The surgeon said that's all that was needed. He also said that if he had a total laryngectomy that he would be able to eat but would not have a voice. Does anyone have any suggestions or help. I don't know what to do and my husband is getting very depressed.. Thanks Rose

Rose, sorry to hear of your difficulty. Is your husband being treated at a major comprehensive cancer center? If not, I would strongly urge you to get him to a cancer center and have him evaluated by a team there. There are specialists who work with cancer patients for eating therapy, speach, and many more post treatment issues. It is not uncommon for the treatments to be difficult to recover from, but there are many ways to improve the quality of life. A major cancer center will usually have these specialists on staff or at least be able to refer you to experts in the field. Don't give up the ship until you have exhausted all avenues to recover from the treatments. Tell your husband not to be depressed, but to find the specialists that can help him improve his quality of life.

Hey Rose,
Also sorry to hear of all the troubles you and your husband are going thru. My husband began his journey at a local community hospital where an oral surgeon did tongue surgery and mod. neck dissections. He only took a few nodes and did not find cancer there and said he didn't need radiation. Exactly four months later he had a neck tumor that was very aggressive and his same doc did a rad. neck dissection but couldn't get it all. It was then that we got a referral to a major cancer center which was not long after I discovered this site. Had I known more then we would have gone immediately to a comprehensive cancer center and Dan would have had more aggressive and better treatment. At this time Dan can eat (he had a PEG for 5 months), however, still chokes and is never without a water bottle. It did get better but it took a while. Like Kirk Georgia says, please make sure you are at a good cancer center. We found out how very important that is.
God bless,
Debbie

First thing I would do is RUN don't walk to the best comprehensive cancer center near you for a second and even third opinion. I don't like what you are being told. Fox Chase in Phila is one. I have a marvelous dr at HUP in Phila if you would like his name.

Did the dr explain why he wouldn't have a voice after a total laryngectomy? Is there some reason he couldn't have a TEP? This also seems like a rather drastic surgery to solve an eating problem unless there is unrepairable damage to the esaphageal opening and this is the only solution.

As to chemo, I've never had it. My drs didn't think chemo would add anything to my treatment either time and in 1997 when I was originally diagnosed, they didn't feel chemo added any signiificant chance for survival in most head and neck cancers.

Take care,
Eileen

Rose: My brother has had the same problem, and he had his peg for over a year following treatment. He is now without the peg and is able to swallow small amounts of liquid and mushy food. He was very depressed about this while he was unable to swallow and only after I repeatedly sent him posts from this site about eating difficulties (and his wife read them also) & talked to him, did he finally see specialists who helped him begin to eat normally. I especially thought some of the very descriptive posts (Posts where individuals explained step-by-step how they slowly learned to swallow again) were helpful. There are a lot of good posts on this site about swallowing, in fact I signed up for this board just to learn about swallowing problems when I found out my brother was still using the peg, more than a year after treatment.

The depression is very treatable and there are meds available to help. My brother won't take them but your husband might. My brother will celebrate his 2 year anniversity (from date of Diagnosis)in April and he has had no reoccurance and is in fact very healthy. The swallowing and depression have been his biggest problems. I have tried to get my brother to read this forum but he says he already has :rolleyes: but maybe your husband will be more receptive. For some people swallowing seems to be a big hurdle. The peg was very useful, my brother lost no weight and he looks great (well, he looks like always did!). Anyway, I just wanted to say that this is a common problem and for some it takes time to resolve. Have hope! Life is good! - Candace

P.s. My brother was treated at a Comprehensive Cancer center and he went to rehab for swallowing. However, he needed more help and I think he was too depressed to seek additional treatment (and it was a bit over 60 miles from his house to the med center, one way). My brother is also a little impatient and he wanted everything back the way it was before he had cancer and he wanted it right now. He got depressed with the new normal of his life. Hang in there! - Candace

Hi,
Just from reading this board for the last two years, I think the men who have decided to have PEG tubes, (let's not get into an argument here, most probably need them to maintain weight), then tend to rely on them too long causing eventual problems with swallowing. Now us folks who happen to like food are willing to either forgo the tube or get rid of it as soon as possible. The longer you do not use the equipment the harder it gets to swallow so if you can't eat a meal, at least try to eat some soup, or yogout, or eggs, or high protein shakes to keep your esaphagus in order. You may not be able to take the full amount of calories you need via mouth, but if you can take some it will help towatd your eventual healing. Just keep trying. If it doesn't work today, it might tomorrow.

Take care,
Eileen

Hi,

I forgot to mention Memorial Sloan Kittering in NYC if you decide to drive east rather than south. There are many more in NYC. Do get other opinions. Total Laryngectomy is nasty operation and no guarantee that TEP will work. Do not do this locally.

Take care,
Eileen