Genetic Services Are "Gift" of Immeasurable Value

True Story of Woman at High Risk for Hereditary Cancer Who Gets Peace of Mind Through Genetic Services

For many years, Eileen Stauber of Demarest worried about getting cancer. Her paternal aunt and paternal grandmother both had died of ovarian cancer, and her father and a paternal aunt had survived breast cancer. Ms. Stauber wondered if she had inherited a gene that put her at high risk to develop breast and ovarian cancer.

Although a doctor had advised her that it was believed that breast and ovarian cancer were maternally linked, the mother of two young girls never really stopped worrying. Her fears were brought to the forefront again when she learned that conventional thinking had changed. Experts had confirmed that the deadly breast-ovarian cancer genes, BRCA1 and BRCA2, also could be paternally linked, that is, inherited from the father.

Ms. Stauber was referred to the Englewood-Mount Sinai Cancer Risk Assessment and Counseling Program at Englewood Hospital and Medical Center by her gynecologist. The program provides cancer risk assessment, genetic testing, and education to people at high risk for genetically linked cancers. Numerous types of cancer have been determined to have genetic links, or be caused by cancer genes." It is estimated that 5 to 10 % of breast and ovarian cancers are hereditary.

Genetic counseling and testing for Ms. Stauber began in the winter with a call to genetic counselor Sherry Grumet, MA, MS, CGC, who explained that it was preferable to begin the testing process with Ms. Staubers father. Test results are sometimes more informative if a family member diagnosed with cancer is tested first. Ms. Stauber explained the importance of genetic counseling and testing to her father, who lives in Florida.

It was an upsetting experience for both. After 15 years as a breast cancer survivor, he was faced with the daunting prospect that he might have passed on a deadly inheritance to Ms. Stauber and her sister, an identical twin. Even though his own physician discouraged him, Mr. Stauber decided to be tested.

Ms. Grumet located a genetic counselor in Florida to provide counseling and arrange for the blood test. Unfortunately, the results of the blood test were positive for a breast-ovarian cancer gene. Ms. Stauber and her sister now knew that there was a 50% chance that they had inherited the cancer gene from their father. If the two sisters inherited the gene, it meant there was up to a 60% chance that they would develop ovarian cancer and up to an 85% chance that they would develop breast cancer during their lifetime.

Ms. Stauber and her sister were tested next, she in Englewood, New Jersey and her sister in Florida. Her sister needed a referral to a third counselor, since she lives in a different area from their father. Three long weeks passed before the results were in. Ms. Stauber remembers the moment distinctly. It was a Tuesday night at 7:30 when she experienced the biggest relief of her life."

Her sister received the good news at the same time, thanks to the careful and thoughtful planning of the counselors who agreed to call both women at the same time. They hadnt inherited the breast-ovarian cancer gene and, therefore, could not pass it on to their children. Their risk to develop breast cancer and ovarian cancer is the same as that of the general population.

Even though the tests were costly and the experience emotionally challenging, Ms. Stauber believes that genetic counseling and testing is a gift." Having the knowledge that I dont have the gene empowers me," she reports. With all the research dollars that are available and resulting in great strides in genetic counseling and testing, people should take advantage of this type of program." According to Ms. Grumet, researchers around the world are making great advances in cancer screening and prevention, which benefit individuals who have inherited an increased risk to develop cancer.

People who do have a cancer gene have a variety of options for cancer surveillance and prevention, depending on the type of cancer they are at risk to develop. These options are presented during counseling and discussed with the patients physician. Some people choose to prevent onset, as in the case of women who have elective mastectomies or removal of their ovaries. Another option can be for more frequent cancer screening, using special methods and beginning at an earlier age, so that if a cancer does develop, it is caught in the earliest, most curable stage. Counselors also educate patients about risk reduction through options such as lifestyle choices and medications.

Ms. Stauber believes that faced with having a cancer gene, she would have taken an aggressive approach, although she never made a final decision. She is now settled back into her happy and busy life with her husband, an attorney, and her daughters, ages nine and six. She is a vice president for a financial institution in New York in a position that fits her busy life. She shares the job with another executive, an arrangement that gives her two weekdays off. The shortened workweek means more time for her children and her own interests, more time to enjoy life and to smell the roses."

Her experience with genetic counseling and testing has made her its proponent, and she is grateful for the skill and compassion of her counselor, Sherry Grumet, whom she describes as professional and warm." Thanks to Ms. Grumets skill and caring, Eileen Stauber and her family were able to achieve a measure of peace not possible before.

Englewood Hospital and Medical Center is home to the Dizzy Gillespie Cancer Institute, a regional center for the diagnosis and treatment of cancer. The Institute includes numerous cancer care programs and services besides the genetic assessment and counseling program, such as The Breast Care Center, the Coe Radiation Oncology Center, the Infusion Therapy Center, the Pain Management Center, cancer screenings, plastic and reconstructive surgery, home care, hospice services, and the Positron Emission Tomography (PET) Scanner, a highly accurate technology for diagnosing and staging many types of cancer and determining whether tissues are malignant or benign.

Although Eileen Stauber could afford genetic counseling and testing which can cost from hundreds to thousands of dollars, not everyone is that fortunate. Individuals seeking genetic services should check to see if their insurance plan covers all or part of the cost of genetic counseling and testing. Also, financial assistance is now available to eligible women thanks to the proceeds from the Walk for Awareness: Our Fight Against Breast Cancer, a fund-raiser held each October in Englewood, New Jersey, and a $10,000 grant from the Community Chest of Englewood.

For more information about cancer genetic services, call Sherry Grumet at 201-894-3313 or Email her at sherry.grumet@ehmc.com.