I am glad to find this site since my sister-in-law (56) was just diagnosed with stage IV tongue cancer. At this point, I don't know the formal designation of the type of cancer. Her ENT referred her to a surgeon at the University of Kansas Medical Center who seems to have excellent credentials and experience in this surgery and reconstruction.

Basically, he told her that she will loose at least 2/3 of her tongue and part of her lower jaw. He will take a bone from her left arm to reconstruct the jaw. Being stage IV, there is cancer in some lymph nodes, but I don't know if this will be addressed in the same surgery.

My wife is on the way to be with her during the upcoming tests next week--a vascular study, cardio workup, CT scan and feeding tube installation.

It's my understanding that the CT scan will check her lungs for cancer, and if it's present, they will treat that before the surgery since the 10-12 hour procedure is really taxing.

There's a good possibility that the feeding tube will be permanent and we won't know what's possible to expect for speech until the surgery other than significant impairment. Radiation and/or chemo are probable, depending on test results. We're fortunate that a good friend in the area is a nurse in a large oncology practice, so we have a good source of answers and information in that area.

I've tried searching the site for similar cases, but it's kind of hard to sort everything out. Any information from those who have had similar experiences would be appreciated. We don't know what to expect other than a rough time for a while.

Thanks,

bob

Welcome to the Oral Cancer Foundation Bob!!

You won't find a more informative site on oral cancer than here. Your sister in law is in for a rough ride. The quality of life issues can be hugh depending on the staging and treatment.
Many of us have traveled the path she is on and survived. She can to!!!

Ask any question you can think of and someone with similer treatment will respond. You can also use the search engine at the top of the page and gain valuable information. The more knowledge you have about this the better decisions she can make. I wish her the best of luck as she starts treatment and please keep us posted on how she is doing.

Welcome again, Danny Boy

Hello Bob, The only thing I want to say is that permanent tube feeding is not usually the end result of the treatment you mention. There are others here whom have been through the same (or similar) procedure and are doing quite well.

Take care

Hi Bob,
As Mark pointed out peg feeding is not an end result. I have been on the peg tube for over four and half years and have not even sipped a drop of water. I lead a very healthy and normal life and am sure sister in law will recover fast enough to get her off peg feeding s soon s possible- at least that is what I hope for.

As Lance Armstrong reveals - LIVE STRONG!
______________________________________________
ANANTH 47 year young! was diagnosed with cancer of the larynx in its last stage in April 2000 and opted for NO surgery. The only option was radiation and chemo- but an overdose of the radiation led to the side effects of creating a fistula between my wind and food passage. This led to a complete blockage of the food passage and hence the pegtube. I know for sure that the peg will remain for a long time to come but the good news is that I was declared totally cancer free last year 2004 - January ( though nothing is ever total in the case of this illness)

Well, the first phase is mostly over. She had surgery a week ago. The tumor in the tongue was larger than hoped so most of the tongue and lower jaw were removed as well as all lymph nodes in the neck.

She went home today,with my wife's support, so the healing is going well My wife is amazed at the reconstruction of the lower jaw. She thinks after the swelling goes down and dentures are fitted, her outer appearance will be essentially unchanged. She is able to speak with limitations, but that should improve with healing and therapy, but will be quite impaired.

The doctor is cautiously optmistic about swallowing, but they will not really address that until healing is more complete and she can begin therapy.

The most discomfort now, is in her left arm, where they took bone and veins and in her thigh where they took a 3x6" patch of skin.

After several weeks of healing, the radiation and chemo will begin.

bob

Hi Bob,
My husband Lee had his surgery-total tongue and part of larynx removed in April of this year. It is a terribly tough road, but she can get through it with support. The chemo and rad are tough as well, but nothing is impossible. he has finally turned a corner and is doing much better. He still has peg-may be permanent and trach as well, but his energy and spirits are returning. I know how overwhelming it can be-they are just so sick for so long. I am a nurse and I was completely overwhelmed when Lee first came home and for months afterward. But, it really does get better, or maybe we get bettet in coping. Whatever the case, things will get better and she will carve a life, albeit a different one, but her life, and that is good.
Best of Luck,
Doreen

Doreen,

Thanks for the note. For me, it's a different set of issues. My wife is there, dealing with the immediate problems, and I'm 850 miles away wishing I could help with the day to day stuff. Still, my issues are small compared to theirs or yours.

She is improving daily in terms of post-surgical recovery and is adjusting to the feeding tube better now. The trach will probably come out next week at her next check up.

Thanks, again,

bob

Bob,
just to give you a heads up. The radiation and chemo part are far more difficult than the surgical aspects and the recovery time is typically much longer - a month of recovery for every week of treatment is very common. I needed almost full time cargiving towards the end and early post Tx.

Bob,
I had the same surgery as your sister in law, although I didn't lose any of my tongue. While surgery was difficult, the radiation was the battle. Please make sure your sister in law and wife are aware of this, as I did not grasp this fact when I was waiting to start radiation. Within two weeks of the surgery I was feeling pretty good, within 4 weeks I was eating what I wanted, feeling great. Radiation knocked me on my rear end and it is the radiation that has left me with any long term effects, not the surgery. I would do the surgery five times over before I would suffer radiation again.
Take care,
Minnie

Gary and Minnie,
Thanks for the information. I have read enough to know a little about the possible effects of radiation and have tried to prepare my wife. Her sister doesn't really want to read a lot about things until they are in front of her. It's her way of coping and she does have a good attitude and plans to fight through it.

I know no one can predict how anyone will react to radiation, but I was wondering how soon after the treatment starts before the side effects really kick in. We're hoping that my wife may be able to come home for a while before the radiation gets serious. Since this was one of the largest tumors the doctor had treated, I speculate that she'll have a fairly aggressive course of treatment. We hope to know more after the next appointment on Thursday.

Thanks,

bob