Welcome to the ACCF Website

Welcome to the Adenoid Cystic Carcinoma Resource Center. This web page is designed to help those with a rare form of cancer called Adenoid Cystic Carcinoma (abbreviated here as "ACC") to find sources of information and support. The home page has many links to additional sources for medical information. Take the time to familiarize yourself with each of these links so you will know where to find information. Be sure to add The ACCF Resource Center to your bookmarks or favorites.

You will find a link on the home page called "Support Groups" for The Adenoid Cystic Carcinoma Electronic Support Group (referred to here as the "Support Group" or the "Group"). If you go to that site you will be able to join a group of over 200 other people (and still growing) who regularly communicate via e-mail posts which are sent to all members in the group. To join ADEN-CYST, just follow the instructions to subscribe. You can access information about the support group, settings, and a link that will allow you to access all of the archives where you can search using "key words."

When you join the Support Group you will receive several messages that provide additional information about the site. Be sure to keep copies of these messages since they contain helpful hints for future use of the site. This Support Group can be a tremendous source of information, support, and help. For sending mail to the group, be sure to add this address to your address book: aden-cyst@listserv.acor.org This Support Group list contains general e-mail posts from the Support Group members. In addition to this list, there is a Medical list where members of the Support Group can post specifically medical information.

If you are joining the Support Group, be sure to select the "Submit Medical Input Form" link at the home page and submit your information. This is sent to Nancy Whitman, (Co-chair of ACCF) who compiles all of this information. This information is kept confidential. If would also be helpful if you could send an initial message to the Support Group with your diagnosis information and a little bit about your current situation. This allows everyone to get to know you a little bit. You will see from the messages posted that people ask various questions and post various information pertinent to ACC. Please feel free to do the same.

Below you will find some Frequently Asked Questions that are routinely asked by new members. Please take a few minutes and review these questions before posting questions to the whole group, since many questions can be answered here first.

Frequently Asked Questions

What is ACC?

Adenoid Cystic Carcinoma is a relatively rare form of cancer that microscopically appears as a low-grade malignancy and often has a history of slow growth, but is best approached as a high-grade malignancy. The most common site where ACC is found is in salivary glands and other head and neck sites. Primary tumors (the tumor that first develops) of minor salivary gland origin are relatively rare, accounting for only 2-4% of all head and neck cancers, and of these, approximately 35-55% are ACC. There have been reported cases of other primary sites besides head and neck and these include breast, bone, lung and other organs.

I was just diagnosed with ACC, how long do I have to live? Because it is most commonly found to be a slow growing cancer, most people have years of life, even in cases of more advanced tumor involvement. Of course, each case is different and there are so many factors that prognosis for each case can vary greatly.

What can I expect long term?

If the primary site of a tumor is treated with surgery and/or radiation treatment, local control at the primary site has a relative chance of being successful, though not in 100% of the cases. This form of cancer has shown itself to be resilient and often metastasizes (travels) to other sites in the body, very commonly to lungs and other organs. It has also shown itself to have a tendency to microscopically travel along the nerve tissues around the tumor site, which creates a challenge for both diagnosis and treatment. When distant metastasis does occur, it may happen 5 to 10 years after the initial primary tumor is found. However, it can happen sooner than 5 years or later than 10. Since the lungs are often the first place where metastasis occurs, it is important to have periodic lung CT scans.

What causes ACC?

As in the case of many types of cancer, it is not definitively known what causes ACC. Diet, environmental conditions, stress and immune system weaknesses have all been looked at as possible contributors, but there is no known single cause that can be proven at this point.

What are my treatment choices?

The three conventional treatments for ACC are surgery, radiation and chemotherapy. There is controversy surrounding various forms of radiation and chemotherapy, and medical professionals often differ in their views for best treatments. For primary tumor sites, surgical removal is the main choice, with follow up radiation treatment in some cases. Radiation alone is used in some cases where surgical removal is not viable because of involvement with surrounding organs and tissues. No one form of chemotherapy has shown itself to be effective in all cases. There has been limited success in using chemo for slowing or stopping tumor progression. There has also been limited success using anti-angiogenesis drugs. There are many clinical trials being conducted with combinations of known drugs, new drugs, anti-angiogenesis and other methods.

What treatment center and/or doctor should I see?

This is a very individual decision. On the main ACC web page are listed some possible treatment centers with contact information. Many doctors have never treated a case of ACC because it is so rare. There are particular doctors and facilities that have a history of treating ACC and many times these resources can be helpful. Talking with other people, such as the people in the Support Group, who have sought treatment can be an excellent source for finding treatment centers that you feel would be most helpful for your situation.

Are there other treatment options besides standard medical treatments? Some people have opted for alternative or integrated treatments involving non-standard forms of treatment. You can visit the Alternative Treatment Site at the web page, or again, talk with others to see what they have decided. Because there have been reports of "scams" in cancer treatment, you may want to visit the Quack Watch web site to research alternative treatments

What about nutrition?

Nutrition is one form of alternative treatment that many have followed either by itself or conjunction with standard and alternative treatments. Because there is a suspected link between the immune system and cancer, it makes sense to build the immune system through proper, balanced, healthy nutrition.

How do I find and use the "archives" from the ADEN-CYST On Line Support Group?

The archives consist of posted messages by members of the group that are saved for future reference. If there is a particular piece of information that you are seeking from the group, you may want to search the archives using a keyword. To do this, select the time frame that you want to search through the archives by clicking the circle beside your choice. You can search whole years or just a particular month. Then click search. The screen will then bring up all of the e-mails with your particular subject in them.

We want to welcome you to the Adenoid Cystic Carcinoma Resource Center and assure you that you are not alone.

Prudence A Jackson and Dan Dubé

You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno or call Juno at (800) 654-JUNO [654-5866]>

Search for Free E-mail Access

Search for Free Internet Access



My name is Sharon Lane and I am a member of the Adenoid Cystic Carcinoma Foundation and the ADEN-CYST, ADCC-MED, Yahoo Chat, and AOL IM on line support groups. So if you felt that you were totally alone, you can see by the previous sentence that there are a lot of us out here on the web.

I like to send this email out to any new members or prospective members of these groups, explaining our website and support groups. I remember when I first got here, I was so very confused. I hope that this explanation helps relieve you of some of that confusion.

Let me first explain our web page for the Adenoid Cystic Carcinoma Foundation. You can get there by entering or 'clicking' on this URL:
http://www.paonline.com/knippd/acc/index.htm

On this page you will find many 'clickable' options.

Please choose the 'Medical History Input' option first. This will submit your medical information to Nancy (the co-chair of ACCF) for the group files. This is confidential, and only Nancy receives them.

'Links to Other Sites' will give you some great options for doing research. My particular favorite is PubMed. Each choice on this new page are also 'clickable' options. For example, if you wanted to go to the PubMed site, scroll down the page until you see PubMed (highlighted in blue), then 'click' it. That will take you to the PubMed site.

'Biographies' will give you some member stories, including the story of that great lady whose picture you are looking at on our home site. We hope that this helps you to know that there are others out here.

'ACC Medical Literature' will give you some 'clickable' literature research options. Of course, it is impossible to keep this part of the site current on a daily basis. So I suggest that you also check current literature on the web.

'Alt Treatment and Nutrition' will show you a sampling of nutritional and natural healing sites. Once more, you will find further options on this site.

'Newsletter' will take you to Nancy's latest letter to the group. Once a month Nancy reports to the group on any advances we have made during the month and projects that we are currently doing.

'Book Shop' will show you some general cancer and health books that can be purchased on line. If you have friends or family members who purchase books on line, this is a great way of raising funds for ACCF. You may want to refer them to this site.

'Conference Chat Rooms' will allow you to sign on to 3 different chat groups. Which chat group you are able to get on depends upon the capability of your internet browser and service.

'Treatment Centers' will give you a list of some, but certainly not all, worldwide cancer treatment centers.

'Home Page' is where you started.

'Print Flyer' will take you to a website where you can access a printable flyer about the group. This would be great to take with you to any cancer support groups that you attend.

'The Lucas Protocal' is a journal of the medical information and constant diligence that it took Steve Lucas to find a clinical trial for his wife, Jan. This will help you to know that people have been paving the road ahead of you.

'Support Groups' will give you an explanation of how to join the online email support groups. Below I will also explain it.

'Memorials' will give you some, but not all, of the names of people from the group who have passed on.

Scroll to the bottom of the home page and please click on 'sign our guestbook'. Please take a minute out to do this. You may also 'view our guestbook'. There are some current members in the book, but not all members have signed the book.

Also click on 'Vital Options'. This will take you to a site that will allow you to find a call-in talk show about cancer. You can find a local radio station to access it or follow the directions for hearing it on the web. They will post all broadcast events from this site.

Last but not least, as you are scrolling down, you will find a clickable option for the 'web author'. If you think that this site is very informative, take a second out and click on this and email Dale a Thank You. He is the person who does all of the hard work on this site and it's links. He also maintains the Yahoo Chat line, and does many, many other things for this group.

At the very bottom of the page you will find the address for the lady who's picture you see on the home site web page. She also works incessantly for this group, regardless of her own medical treatments. Her address is listed here for any people who do not have daily access to the web. You may write to her and she will send you the address of a 'pen pal' to keep in contact with you.

OKAY, NOW ON TO THE SECOND WEBSITE:

This site will allow you to sign on to the 2 online email support groups. You can get to this site by 'clicking' below or entering the URL address: http://www.acor.org

Choose the 'Join a List' option on the first screen. There are two groups that pertain to ACC specifically -- ADEN-CYST and ADCC-MED. The first is a general support group, the second (MED) is for medical information posts. I would recommend that you join both groups.

On each option you will be instructed on how to join the list and comfirm your subscription. This is a relatively easy process, if you follow all of the instructions. If you have any questions or problems, you may email me privately or contact Marian (the other greeter for ACCF) at (meinen1@home.com).

Once you are on both lists, you may just want to read the post for a while, or participate immediately. Whatever you are comfortable with is okay. It would be informative to the group, if you include in your first post to the MED list your medical diagnosis and history (ie. diagnosis date, age at diagnosis, body site, surgeries, treatments, etc..). You may also want to post any questions that you have to the ADEN-CYST group.

PERSONAL MESSAGE:

I know that this is very lengthy and I hope that you have not found it overwhelming. That is not the intent of this email. I just want to add a personal note that I am sorry that you are here. The fact that you are here means that you, or a loved one, has cancer. This is not an easy journey, I know I am also travelling it. When I first came here my mind was whirling, but a few of the members steered me in the right directions. I know you will be given the same help. This is a diversified, wonderful, group of people. I have met many here that I know well, even though I have never met them face to face. They share there experience, strength, hope, feelings, and information openly. After all, our very lives depend on it.

I welcome you to our groups.

Take Care,
Sharon Lane - upstate New York

lane@epix.net

Medical
History
Input Form		 Treatment
Centers		 Home
Page		 Print
Flyer		 The Lucas
Protocol		 Support
Groups		 Memorials