Hi,
Has ANYONE had total glossectomy and partial laryngectomy? If so, I'd love to find out about
your swallowing status? I've posted in several different areas and haven't heard of anyone.
Thanks,
Doreen

Doreen, I have seen your posts and I don't think we have had anyone here with this exact procedure. I am sorry that your question has not been answered. I can tell you that there are many here whom have had post treatment problems that over time get better. The amount of time varies a great deal from person to person. Keep checking here though someone might read this and have your answers.

Mark,
Thank you for replying. I guess they weren't exaggerating when they said it was an uncommon procedure. We were told he would have better swallowing had he had a total laryngectomy or only part of the tongue removed. He can't fathom at 44 never eating or drinking again, but we are thankful he could have some treatment-there was a question of palliative care only since his tumor was said to be "massive." Also lucky to have no node invlovement-0/65. Thanks for listening.

Doreen, Is he currently in radiation treatment? If so the radiation will affect the swallowing process quite a bit. Look for improvement after several weeks and even months after the radiation ends. It is a slow process. I am sorry this has disrupted your lives at such a young (my) age. There are folks here whom have had the total glossectomy and perhaps they can share some of their experiences.

I am amazed that he had a "massive" tumor with no nodes involved. Perhaps you could tell more about his experience? How it was discovered etc.

Take care

HI Mark,
Lee is currently undergoing chemo and IMRT rad( 8 more to go.) We are aware that the rad will cause a temporary backslide but were hoping to find some long term answers with regard to swallowing. The issue is that without a tongue, the food or liquid must usually be pushed to back of mouth. This will be extremely difficult without an epiglottis or the false vocal cords to prevent aspiration.
Lee had tonsillar non-hodgkin's lymphoma 10 yrs. ago with chemo and mantle field rad. He has since had typical posr-rad symptoms- dry mouth, some difficulty swallowing,etc. so his symptoms this time were vague and somewhat attributable to pasr rad. The past rad also made it impossible to have the treatment of choice for his CA-chemo and rad first-impossible since the area was previously heavily radiated. He was thankfully able to have some rad which improved his prognosis. The surgeons were also surprised that he had no node involvement as he used the word "massive" on too many occasions. They also got all the cancer with clean margins and only one close one. They recommended chemo and rad only because of the sheer size of the tumor. It has ben quite a ride, but we feel grateful they could offer treatment. I hope that when he is feeling better, he will chat with some of you. He is feeling pretty bad physically right now and is depressed as well-we are lucky to have a beautiful little boy to give us hope and courage.
Your picture is great-very encouraging. Congratulations on your good health and kind spirit..
Doreen

Hello Doreen,

I have no knowledge about the type of surgery and swallowing problems Lee is having.
I can offer my support to both you and Lee. As you travel this diffucult journey keep posting
any questions you can think of. Someone with similer problems will respond.
Use the search engine at the top of the page, you can read many older postings that may help you, The more knowledge you have the better off you are.

Welcome to the Oral cancer Foundation. It is a tight band of brothers that are all going thru the same thing. That includes caregivers also. I
believe it's just as tough if not tougher on the caregiver as the patiant. We tend to vent our anger at those closest to us. We don't really mean it. Deep down we know how hard it can be on the primary caretaker.

Best Wishes, Danny Boy

Doreen, there will be many people here rooting for Lee and you. It occurrs to me that because of the nature of Lee's treatment, you may be of great help to someone else down this long hard road. Hope you and Lee will have the strenght and stamina to continue sharing on this forum. Amy

Hi Doreen,

I had a total glossectomy in July 2003 but no larynx involvement. I did respond to your note (on June 20) but since my surgery wasn't the same as Lee's, I'm afraid I can't be of much help except to say that we're all here for you guys. Hang in there - it does get better although at times that's hard to believe.

Hugs, Nancy

Hi Doreen,

My husband had a complete glossectomy and partial larynectomy also. His didn't involve the vocal cords. He has not been able to eat or talk since. The worst part of the after effects of the surgery was the trach which he will undoubtedly always have. The day they were going to do a swollowing test to see if anything was going down the esophogus was the day they discovered the cancer was back. He was so discouraged that he canceled the test. The cancer is now back for the 4th time. They are trying to slow it down with chemo again.

I hope the two of you are more fortunate that we have been in this battle.

Lowanne

Hi Doreen,
How many radiation treatments is he getting? How many did he have before? When I had my operation 4 years ago, they said I wasn't a candidate for rads because of previous 36 treatments. I only had a tiny tumor in exactly the wrong. Guess things chnage a lot in 4 years time.

Take care,
Eileen

Hi Lowanne,
I am so incredibly sorry to hear your news. I cannot even imagine how the two of you must feel after going thru so much already. It seems so unfair. I don't know how you keep your resolve. We agree that the trach is horrendous. Why can your husband not speak if he had only partial laryngectomy? I know with the glossectomy speech is certainly less intelligible, but doesn't he still have his vocal cords?
I really don't know what to say to you other than I do not even know you but my heart is broken for the two of you and I hope you are able to find some peace in your life.
Doreen

Hi Eileen,
Lee is getting 30 rads this time(IMRT). Last time- 9 yrs. ago he had mantle field (30 also.)
There certainly was a question whether he could receive the rad at all. He could not receive rad enough to have chemo/rad without the surgery but coukld have adjunctive rad after surgery. Without the rad, his prognosos was 30-40%. now we are told is more like 60-70%. After they reviewed his old rad records and port films,
we were told that that treatment was done very well and judiciously and not overkilled as many do, so we did have some room to play with. The irony is that rad the first time was not needed for cure and was done as a little insurance since he was so young. He had a 90% prognosos without it, but who knew? I guess we make the best decisions at the time with whatever info is available. It is our understanding that it is not the total # of treatments that is important, but rather the amount you receive. We also got a second opinion at Sloan to be sure he needed this radical surgery-they concurred.
Doreen

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.