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