Frequently Asked Questions:

§ What is adenoid cystic carcinoma?

Adenoid cystic carcinoma (“ACC”) is a rare cancer that usually starts in salivary glands in the head and neck but can occur in other areas of the body as well. Both children and adults may develop ACC, although it occurs more often in adults over age 40.

§ What causes adenoid cystic carcinoma?

Currently there is no known cause. Smoking has not been found to be a cause. ACC has not been found to be hereditary, and no specific environmental risk factors have been found.

§ How long do I have to live?

Adenoid cystic carcinoma is usually a slow growing cancer, but it can be relentless. Many people live for years after initial treatment, but ACC may return to the original site or metastasize (spread) to other parts of the body, most commonly the lungs and liver. In one study of 160 ACC patients, disease specific survival was 89% at 5 years but only 40% at 15 years. Also, there have been cases of ACC that grow faster. Your doctor may recommend periodic scans (CT, MRI or PETscans or a combination of these) to monitor the results of your treatment and watch for any new occurrence of ACC. Your doctor may also advise you to have a bone scan.

To read more about CT scans, click on the link below:

http://www.radiologyinfo.org/en/info.cfm?pg=bodyct&bhcp=1

To read more about MRI scans, click on the link below:

http://www.radiologyinfo.org/en/info.cfm?pg=headmr

To read more about PET scans, click on the link below:

http://www.radiologyinfo.org/en/info.cfm?pg=PET

To read more about bone scans, click on the link below:

http://www.radiologyinfo.org/en/info.cfm?pg=bonerad

Click on the link below to read more about prognostic analysis of ACC: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16965658&query_hl=1&itool=pubmed_docsum

§ What do all those medical terms mean?

Click on the link below for a useful medical dictionary:

http://cancerweb.ncl.ac.uk/cgi-bin/omd?action=Home&query

§ What is the usual treatment for ACC?

Click on the link below to read information on treatment.

http://www.healthsystem.virginia.edu/internet/cancer/teampages/moskaluk/ACChome.cfm#treat

Click on the link below to read about Radiation Therapy.

http://www.cancer.gov/cancertopics/radiation-therapy-and-you/page2#b1

We also hope that you will join the free email Information Group where members share information about their experiences with treatment, side effects, doctors, hospitals familiar with ACC, and much more.

§ Since ACC is rare, are there doctors that are more familiar with it than others?

Because ACC is rare, the largest hospitals tend to have more experience with ACC, just by sheer volume of patients seen. You local doctor may not be as familiar with your type of cancer as a doctor at a large cancer facility.

To find a National Cancer Institute (“NCI”) "comprehensive" cancer center, click on the link below (“…all Clinical and Comprehensive cancer centers also provide clinical care and service for cancer patients”):

http://www3.cancer.gov/cancercenters/centerslist.html

To read more about the NCI Cancer Centers Program, click on the link below:

http://www3.cancer.gov/cancercenters/description.html