Attacking rare cancer begins at home
by Tracy Ahrens
Russell Publications, August 16, 2007
www.russell-publications.com
For 16 years Alicia Almanza has fought a slow growing cancer that has no specific treatment. While she pays the price emotionally and physically for this disease called adenoid cystic carcinoma, or ACC, she has donated money every year to the American Cancer Society with prayers that a cure will be found. The Will County resident believed that researchers were consistently using some of that money to research ACC. But recently she learned that few of the nation’s research centers focus on this rare form of cancer. Now Alicia’s cancer has progressed to an advanced stage. What originally started as a small lump in the roof of her mouth has now spread to her lungs. There is no known treatment for this type of cancer. “When I told my daughter that the cancer was now in my lungs, she asked me if I was going to have chemotherapy or radiation. I told her ‘No,’ ” Alicia said. Her daughter, Courtney, 15, was shocked. That’s when Courtney insisted on doing something. She wanted to help her mom and future patients who develop ACC. “She told me ‘We have to do something,’ ” Alicia said about Courtney. “She suggested we start a local organization to raise funds for ACC research.” Networking with friends and relatives, Courtney and Alicia gathered people interested in the cause. They call their group Attack ACC and met for the first time in February. On September 9 they are holding their first fund-raising event, a 5-mile non-competitive walk and bean bag tournament at Hickory Creek Junction Preserve in Mokena. The event starts at 9 a.m. Funds raised will be sent to the University of Virginia Comprehensive Cancer Center. They are one of the few cancer centers in the United States that have dedicated themselves to doing research on adenoid cystic carcinoma. “My mom doesn’t have a choice on what type of cancer she has, but she should have the same shot at a cure as anyone who suffers from other types of cancer,” Courtney wrote on their Web site, www.attackacc.org. “We aren't doing this fund-raiser and offering this organization just for me,” Alicia said. “We are doing this because there is nothing out there to help fight ACC.”ACC explained
ACC is a cancer that can exist in different body sites. It most often occurs in the head and neck areas, in particular the salivary glands, but it has also been reported in the breast, lacrimal gland of the eye (which produce tears), lung, brain and the trachea. Signs of this cancer depend on the origin of the tumor. Early lesions of the salivary glands are often painless, slow-growing masses in the mouth or on the face. According to a Web site www.oralcancerfoundation.org, most patients with ACC survive for five years after initial surgery, only to have tumors recur and progress. Distant spreading of the cancer often shows up in the lungs or liver. People of varying ages develop this cancer, including children. Most people are diagnosed in their 40s to 60s; more women are diagnosed with it than men. According to the Illinois Department of Public Health, epidemiology division, from 2000 to 2004 there were 235 cases of ACC noted in the state. During that time frame, 15 cases were from the Will County area. No strong genetic or environmental factors have been identified to cause this disease. Primary treatment for ACC, regardless of where it is located, is surgical removal of the mass with clean margins. This can be challenging in the head and neck region due to this tumor’s tendency to spread along nerve tracts. Chemotherapy is sometimes used for cancer that has spread to other areas of the body. Recently, one woman with ACC was treated with radiofrequency ablation for tumors in her lungs. Since surgical removal of both lungs is obviously not an option, pinpoint targeting of tumors with a microwave to “cook” the cancerous tumor is a better choice. There has also been some work in the lungs with cryoablation which freezes rather than cooks the tumor.Alicia’s Battle with ACC
Alicia remembers a dental visit at the age of 18. She had just given birth to her daughter, Courtney, six weeks before. The dental exam was for a simple cleaning. But her doctor spotted a small lump in the roof of her mouth. Now 34, Alicia, a single mom and a mortgage processor in Downer’s Grove, recalls her journey with ACC. From that dental visit, Alicia made her way to the University of Chicago Hospitals for a biopsy of the lump. Results came back saying it was cancer. After seeing a couple of otolaryngologists - physicians trained in the medical and surgical management and treatment of patients with diseases and disorders of the ear, nose and throat - Alicia had surgery at Northwestern Memorial Hospital, Chicago. The mass in the roof of her mouth and surrounding tissue was removed. She was under the assumption then that the mass was simply oral cancer. In 1997, Alicia started having sharp sensations in her left cheek. She went back to Northwestern and underwent a CAT scan. This revealed that the cancer had come back in the left sinus cavity above her cheek. Again she underwent surgery, this time removing the cancer in her sinus and “clear margins” around it which included part of her cheek bone. She also had radiation. “When I was first diagnosed with this cancer I was young and naive,” Alicia said. “I had surgery and went back to my normal life. “The second surgery altered who I am,” she said. “The surgery was extreme, altering the appearance of my face drastically. Today I have a prosthetic plate in the roof of my mouth and part of my jaw and cheek bone were removed.” When the second surgery took place, Alicia was told that the cancer was adenoid cystic carcinoma. Several months ago, Alicia went to her doctor for a routine CAT scan of the head, neck and chest. She was told that multiple areas of cancer are now in her lungs, varying in size up to a couple millimeters. “It is typical for this form of cancer to gradually make its way to the lungs,” Alicia said. At this point, her oncologist said there is no further treatment that can be done. Chemotherapy doesn’t tend to fight this type of cancer, Alicia said. Radiation is not an option because one of the masses is near a major artery. She was sent home to live with the cancer. Alicia began scanning the Internet to see if there were research centers anywhere in the country that may be able to help her. She traveled to M.D. Anderson Cancer Center, in Houston, Texas, a facility that has a reputation for treating rare cancers. They sent Alicia back home saying they had no treatments available to offer her. Every six months she has another CAT scan to monitor the growth of the masses, while every three months she visits her oncologist to have tests to monitor signs of cancer in the blood. “Eventually I’ll face chest pain, shortness of breath and possibly cough up blood,” Alicia said. “Other than that, right now I feel fine.”Attack ACC
According to their Web site, the mission of Attack ACC is “to save lives and raise money for ACC. By increasing awareness of ACC through education and highly successful fund raising, much needed research can be pursued in this field giving those whose lives ACC touches the gift of hope they deserve.” Alicia, with the help of her cousin, Joelle Solomon of St. Charles, chose to give funds they raise to the University of Virginia. Their contact at the university is Scott Karr, Director of Development, Cancer Programs. Karr helps raise funds for physicians who are doing research there. For example, in 2005 Christopher Moskaluk, M.D., Ph.D. at the University was performing a molecular analysis of ACC to identify the genes critical to tumor formation. These genes could become specific targets of chemotherapy approaches. Alicia’s entire family, including her parents, three sisters and one brother, have helped keep Attack ACC going in many ways. One item they sell to raise funds is boxed greeting cards. Since April they have sold over 700 boxes at $25 each. Courtney is also selling bead jewelry she makes including pins, necklaces, bracelets, earrings and eyeglass chains. “My mom has been through a lot with this cancer,” Courtney said. “She still looks forward to another day and she is giving her all for this organization. I’d be depressed if I was dealing with a rare cancer that there is no cure for, but she’s trying hard to fight this cancer.” “The organization (Attack ACC) has put a positive view on this cancer for me,” Alicia said. “I was so jealous of my sister and other friends who were getting married and such. I kept looking at myself and thinking ‘What have I done with my life? What will my daughter think of me?’ Having this organization and the upcoming walk-a-thon gives my daughter hope. With all of my surgeries and the trauma I went through mentally, physically and emotionally, my daughter is the reason I have pushed forward. She is my love. I don’t want her to feel that no one cares about her mom.”
Please read this Chicago
Sun-Times article about a Family who fights rare form of cancer
www.dailysouthtown.com/news/547120,cancer-907.artic