My brother is 45 yrs old and was just diagnosed with ACC. His appointment with the surgeon is on monday. The tumor is on the roof of his mouth. What questions should we be asking his surgeon.

I hear there may be excellent care available in Houston. he lives in Dallas. Does anyone know anything about that? Has anyone had surgery to remove a tumor on their palette? What do we have to look forward to? How can we in his family help him through this?

I can't answer your question about the surgery or about the location of the tumor. First, I had tonsil cancer and secondly they melted it with radiation.

The institution you mentioned is MD Anderson Comprehensive Cancer Center. They are in the top 3 cancer centers in the US. That would be a great choice. We always recommend a comprehensive cancer center whenever possible.

It's hard to say what you have to look forward to yet. We would need to know more detail about the staging and treatment options. You said ACC I presume you meant adenocarcinoma? Or did you mean SCC for squamous (pron. skwaymus) cell carcinoma?

If he goes to MD Anderson they will have a medical team assigned to him to review all of his options, be it surgical, radiation and/or chemotherapy. In any case, before a surgical decision is made, he should also see an oncologist and radiation oncologist as well.

You can help by driving him to his eventual treatments, going with him and taking good notes, visiting here and finding out pertinent information relating to his care. Mowing the grass, finding out his entitlements for disability insurance, etc. Be their rock.

Welcome to our board. Gary has given some excellent advice. This is a time of feeling overwhelmed so the best thing you could do for your brother is to learn about all the details, etc., of his suggested treatment so he can make an informed decision. Then just be there to listen to him.
Take care and good luck,
Minnie

Hi,
While I think the information on the Oral Cancer Foundation site is as comprehensive and helpful as any site on the web, the real benefit is the accumulated experience of this group and the willingness to help that members contribute.
Nonetheless, there are other good sites out there, such as, the National Cancer Institute. From their oral cancer page (http://www.cancer.gov/cancertopics/wyntk/oral/page9), they list the following questions that you might want to ask before treatment begins. [Please keep in mind Gary's suggestion of getting an opinion from a comprehensive cancer institute such as MD Anderson) to determine if surgery is the preferred option.]

What is the stage of the disease? Has the cancer spread? If so, where?
What are my treatment choices? Which do you recommend for me? Will I have more than one kind of treatment?
What are the expected benefits of each kind of treatment?
What are the risks and possible side effects of each treatment? How will treatment affect my normal activities? Will I be given anything to control side effects?
How long will treatment last?
Will I have to stay in the hospital?
What is the treatment likely to cost? Is this treatment covered by my insurance plan?
Would a clinical trial (research study) be appropriate for me?
Should I try to quit smoking?

Hope this is of some help. - Sheldon

Hello. I just wanted to chime in and say that M. D. Anderson is an excellent choice for treatment and if not treatment, then definately a second opinion. I was treated there and I can't say enough good things about them.

-Brett

I live in Dallas and if your brother would like to speak with me or needs anything, I would be glad to help in any way possible. You can click on the link to email me or private message me.

I had my treatments at UT Southwestern (Simmons Comprehensive Cancer Center) but I did have a second opinion done through MD Anderson in Houston. They have a great speedy process of doctor to doctor to review the treatment plan, etc.

I am sorry your brother has this dreaded disease but as Sheldon mentions, there are many questions to ask and very little time to wait for answers.

Ed

Hello
I am so glad you found this site early , there is a wealth of information on here. Please take the time to go through the old posts. There are not many questions that someone on here cannot help you with.
He is so lucky to have someone who cares.
Advise your brother to start bulking up , he is going to need all the calories he can take in.
Take care , keep in touch .
Marica

Caregiver to Husband Pete, SCC stage IV base of tongue . finished treatment 7/03 doing great.

Good questions, Sheldon. I wish I had seen this before we started our journey with my husband's cancer. I sure felt dumb as the proverbial stump until I got on this site and got reading.

Lowanne

Hello, this is my first post. My brother, 32, has been diagnosed with cancer at the base of his tongue. He will finish his maximum lifetime allotment of radiation tomorrow at which time the doctor plans to give him a two week break before starting more chemo. We only discovered last week that there has been swelling in the lymph nodes and activity in the chest since diagnosis. My brother and his wife did not understand this either and it has been a horrific week. We are trying to get him into MD Anderson a.s.a.p. His current doctor is not encouraging and his assistant has been a pain, saying it is a waste of time and money and even said if my brother insisted on "messing around" he could loose his current doctor. Needless to say, I have lost my faith in his current health providers, but am doing everything within my power to step back, let my brother and his family make the decisions, and simply support him in anyway needed. I've seen many post talking about removing lymph nodes, ect. The doctors have talked like this is not an option. Can it still be done after radiation? We are trying to buy as much time as possible for my brother, his wife and their four-year old little girl. Thanks in advance for any help and/or advice you can give me.

Hi Tonya: Yes, lymph nodes can be removed after radiation. Doctors disagree. My brother had radiation first, then chemo w/the radiation, & then the lymph nodes removed. His surgeon felt this was a horrible mistake but the rest of the team didn't. Surgeons cure things w/surgery so that's what they think of first (as the old saying goes, if all you have is a hammer, everything looks like a nail). My brother is doing very well and has been cancer free for a year. But he also was NOT a smoker & is a vegetarian & a very healthy 57 year old man.

Your brother's case is unique because each one is and his cancer may be more advanced and that is why they won't do surgery. From what I've read, diagnosis at a younger age is apparently indicative of more serious problems(earlier exposure to cigarettes, more virulent cancer, etc). There are a lot of factors involved. Or his doctor doesn't believe in surgery. There are different approaches! Tell him to go Anderson & get a second opinion. Good luck! - Candace

Sister to man dx 4/03,stage IV base of tongue, finished tx 9/03. 12 clear exams