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

Candace,
Thanks so much. He doesn't smoke, but he has dipped snuff for many years. He no longer does that, of course. He couldn't if he wanted to. I am so glad your brother is doing well. We are just rebounding from the death sentence the doctors handed him and I am so glad to see survivors who, even with stage IV, are recovering and doing well. While I am trying to stay realistic, it is nice to have a ray of hope.
Thanks again,

Tonya,

I sent you a couple of emails today. Also, surgery before or after radiation can go either way depending on many factors. My doctor did not do the surgery because he said if the treatment didn't kill all the cancer, he would not have to take as much area around the cancer for clear margins. He also said that should it return, there would be no other treatment options other than surgery. Lastly, he said studies show more recently that with advanced stages, there is no significant improvement in survival rates with or without the surgery. In other words, the surgery wouldn't significantly improve my chances of beating the cancer.

I wish you the best.

Ed

Thank you Ed,
Initially the doctors were planning to remove 1/2 of his tongue. Unfortunetly it had spread past the midpoint and they opted for radiation and chemo to reduce the size. Last week we were told the tumor had reduced in the wrong direction and the tumor had "legs" that had wrapped around something in his jaw. I'm sorry I can't remember all the medical terms. Anyway, they felt surgery was out of the question due to this. However, when I hear about people who have had jaws, lymph nodes, and even parts of lungs removed, I wonder if this could be our solution. Then again, it might be better to focus on quality of life at this point and let him and his family enjoy the time they have left together. Like I said earlier, we are letting them call the shots and then will support them in any way possible. It is just so hard not to reach in and try to help. I have always been the caretaker in the family and for the first time in my life I realize I do not have the answers, I do not know what's best and I can not fix this.
Tonya

Hi Tonya,
I understand allowing your brother and his family to make their own decisions, but it may be that you are less emotional then he and his wife and you have more knowledge at this time. If I were in your position, I would push hard to get my brother a second opinion from MD Anderson. His doctors sound heartless and unprofessional. Any doctor that objects to a second opinion is not a doctor I would want on my medical team.
Also, while I have heard that this cancer in someone as young as your brother can be more aggressive AT TIMES I have not heard that it is due to earlier exposure to smoking. I have always heard the opposite, that it is more an older persons disease as it takes years for the effects of smoking, drinking to build up. Maybe I'm wrong?? Anyone have the correct information?
Take care Tonya and do what your gut tells you to do.
Minnie

Minniea,
Thank you for your encouragement. His doctor was suppose to send the records yesterday. Hopefully we will hear back from MD Anderson soon.
Tonya

Hey Tonya,
I just re-read your post and you need to get your brother out of there and into a cancer center ASAP. It is a well known fact to many of us that we don't get a second chance to battle this cancer. PLEASE let your brother know that this may mean the difference between saving his life, literaly. Call MD Anderson yourself, make yourself heard, call repeatedly so they know the urgency of it. I would in NO way let the doctors he has now take care of lining up a second opinion. You are just now finding out there may be lymph node involvement?? What kind of doctors are you dealing with? You may need to step in and be your brothers advocate here, step on a few toes. Who cares as long as it gets him where he needs to be. I love my brother so much and can only imagine how you feel right now. Call the doctors yourself, get the ball rolling. Get plans together to get him to MD Anderson when they need him to be there. I wish you well and will pray for you and be thinking about you today.
Minnie

Hi Tonya
The thing here to remember is time is of an essence, if you have to tread on toes, do it girl, do it politely but persistantly, as you have read in the posts sitting quiet and saying nothing is not an option, so write down all the things you think your brother needs to ask and give it to your sister-in-law and tell her you WILL ask if that is what she wants and tell her that YOU will stand up in front of them and if needs be.. Please keep us up to date on how it all goes...
Prayers.. love and special hugs
Helen

Tonya, Welcome to the site. Sorry you need to be here. I agree wholeheartedly with the above advise to go to MD Anderson for a second opinion. I had tonsil cancer, which is a little different, but I had chemo and radiation first, then surgery and it has worked out well for me. I was stage IV also and had lymph nodes involved. Please have your brother get a second opinion. My team felt that even though the tumor was shrunk much smaller by the rad/chemo, surgery was a guarentee that no recurrance from the cancer I had in my lymph nodes could occur because the lymph nodes were removed. And surgery is not difficult compared to radiation. So please get a second opinion and don't let anyone convince you to give up. Your brother is very lucky to have you to help him with this problem. Will add you all to my prayers.

Oh, I am SO angry! I had called MD Anderson Monday and they told us what they needed faxed. The doctor's assistant was not pleased and, long story short, they want everything to come from my brother. SO, he asked them to fax the papers on Tuesday. Here it is Friday. I just called MD Anderson to see where we were at in the scheduling processes and they have not received the papers! Anyway, I called my brother, who is still hospitalized, and said - tell them to send them TODAY. I'm just sick, three precious days wasted. If my brother can't get something accomplished today I will have to get ugly and I've been trying to avoid that. I can't help but feel the reason they want to keep him is financial. Thankfully he has good insurance. I'm afraid they may see that as a bonus as well. Why else would doctors refuse - or postpone - something like this? I know I sound upset right now, but I will remain calm, but firm in my dealings with the powers that be, as you have suggested.
Thanks for a place to vent.
Tonya

Hello Tonya, I have had radiation twice, then I had the surgery. It does take longer to heal than if there was no radiation, but the surgery can be done. I just read your post, I am so sorry for all this invading your family and your hearts. I too was 32 when I was first diagnosed with tongue cancer. The first time they got it all, I was lucky, you could say. Then it came back with attitude..I wish your brother the very very best, God Bless You and Yours, I am praying,, Miss Vicki

Tonya: Why not get ugly?? Too many times us women feel we have to be 'nice' and not express anger, frustration, etc. You don't have to name call or use profanity, but you can express anger at the doctor (to the doctor!!) and to his medical staff. If necessary, practice in front of the bathroom mirror, "I am very angry about this. You are dragging your feet! We want the records faxed today. I am very angry. My brother is very angry!" Practice saying it and, honestly, your brother will not get better care is you are a 'nice girl.' What is the old saying "Kick ass and take names?" Something like that.

Honest threats work too. By this I mean, you can ask the doctor's nurse/office assistant/physician's assistant/whomever, whether you need to call the state licensing board (or whomever licenses doctors in Texas) in ordr to get your brother's records released.

Also, the hospital he is in may have a patient rights ombudsmea. Ask if they do. Complain to them. Call Anderson & ask what you need to do when your brother's doctor is resisting forwarding the medical records.

My son, who is now grown, is handicapped and I learned, the hard way, how to advocate for him when people dragged their feet. With your brother & his family's permission, get confrontive & yes, threaten to call the licensing people or his hospital or the local medical association. It doesn't matter whether they are the 'right' agency to call. Somewhere, there is someone who might help. One of them might pick up the phone & call the doctor & say "Get going on this!" or they may tell you who to call. Make waves! FUSS!! Loudly!

And, the beauty of it is you don't have to get 'ugly' but make a scene, DEMAND help now! Tell the doctor to fax pertinent information TODAY. And, if he/she is resistant, call the state licensing board. They may not be the right people but they may be able to help.

Hey, another idea - call a local TV station that has a consumer helper and ask for help in getting your brother's medical records released.

And see if your state has an insurance/HMO ombudsmen and call them. Call anybody who offers help in a remotely related field.

MAKE A FUSS!! Get out your phone book or get online & look up the phone numbers/websites for licensing & HMO complaints, the local medical Assoc., etc. Also, when you call a number, write down the name of the person you speak to & call them by name. If they don't give you their name, ASK!!

Good luck - Candace

Sister to man w/base of tongue cancer, Dx 4/03, finished Tx 9/03. 12 clear exams

Thanks for the useful info and encouragment. My brother asked his doctor again this morning to send the records and the doc said they should have already been sent and he would check on them and try to get them sent today. I told my brother if they were not sent by Monday, with his permission, I would take care of things with the doctors and get them sent and he said okay. So, just cross your fingers for us, maybe they will send them today and we will have one less battle to worry about and can get on with winning the war.
Tonya

Tonya,
Your husband can sign to get his own medical records or his wife can. Get them and send them yourselves. Kick his docs to the curb and get him taken to MD Anderson. Demand and demand loudly, his life depends on it.
Minnie

We heard from MD Anderson and they won't see him until his current treatment is completed - Chemo and all. So now we are playing the waiting game.
The good news is, if his blood work looks good Wednesday, my brother will be able to come home for a while. (He is 3 hours away right now). We are so looking forward to this, as is he.
Thanks again for all your concern and much needed advice.
Tonya