#16352 09-09-2004 10:41 AM | Joined: Sep 2004 Posts: 1 Member | OP Member Joined: Sep 2004 Posts: 1 | 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? | | |
#16353 09-09-2004 11:36 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | 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.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#16354 09-09-2004 04:13 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | 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
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#16355 09-09-2004 04:33 PM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 218 | 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
Dx 1/29/04, SCC, T2N0M0 Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions) Dx 3/15/2016, SCC, pT1NX Tx 3/29/16 Surgery
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#16356 09-10-2004 07:18 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Feb 2004 Posts: 162 | 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
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003. Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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#16357 09-10-2004 10:02 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | 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
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#16358 09-10-2004 12:27 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | 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.
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#16359 09-10-2004 04:09 PM | Joined: Mar 2003 Posts: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2003 Posts: 64 | 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 | | |
#16360 09-22-2004 05:58 AM | Joined: Sep 2004 Posts: 153 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Sep 2004 Posts: 153 | 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.
Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
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#16361 09-22-2004 07:28 AM | Joined: Jun 2004 Posts: 72 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2004 Posts: 72 | 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
Sister of guy w/base of tongue cancer, Stage IV, Dx 4/03, finished Tx 9/03
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