Support Group Formed- LIOCEANS

Oct 21, 2004~LI OCEANS in the Manorville & Southampton Press

Support Group Formed

By Carissa Pleiss

Although she did not realize it at the time, Khristine Lupinacci of Manorville met some of her best friends while fighting a deadly illness.Diagnosed with ovarian cancer three years ago at the age of 38, Mrs. Lupinacci explained that the hardest part of her recovery was not the physical pain, but rather the mental anguish of not having the support of others dealing with the same illness—a disease more fatal, but far lesser known than breast cancer.“Of course, my family and close friends were great support, but at times I felt like I was going through it myself,” Mrs. Lupinacci explained. “Sometimes they just didn’t know how to help me feel better.”

According to the American Cancer Society, an estimated 25,580 women will be diagnosed with ovarian cancer this year and approximately 16,090 of those women, or 59 percent, are expected to die from the disease. By comparison, an estimated 215,990 women will be diagnosed with breast cancer in 2004 and about 40,110 of them, or 19.5 percent, are not expected to survive.Mrs. Lupinacci was one of the fortunate ones; she is now cancer-free following a hysterectomy and 21 weeks of chemotherapy.

But rather than quietly returning to her normal life, Mrs. Lupinacci decided she wanted to help others suffering from ovarian and other gynecologic cancers. About a year ago she registered with an on-line list of cancer survivors and, to her surprise, she found other women who went through similar ordeals. Following several on-line conversations, they eventually met for Chinese food and, after sharing their experiences with each other, decided that other women in their situations deserve a network of support.And, about four months later, they created one.Supported by the ACS, the Long Island Ovarian Cancer Education Advocacy Networking Support (OCEANS) is a new organization committed to raising public awareness about ovarian and other potentially-deadly gynecological cancers.

Members offer support to women who have been diagnosed with cancer and hold monthly informational meetings at the group’s offices in Hauppauge.In addition to Mrs. Lupinacci, the founding members of LI OCEANS include Risa Locascio of Centereach, Sandy Rich of Greenlawn, Karen Sievers of Coram and Eileen Tobin of Brightwaters—all of whom are ovarian cancer survivors.

In a recent interview, all five said they wanted to launch a support group because they do not believe other women should have to face their illnesses alone.“We’re the only game in town,” Mrs. Locascio said. “And we’re passionate about helping others.”Mrs. Lupinacci said about a dozen women are now taking advantage of the networking program offered by OCEANS, which is still in its infancy stages. But Mrs. Locascio was quick to point out that the organization’s existence is vital to educating more women about ovarian cancer and other related diseases.“Ovarian cancer kills more women but breast cancer gets more attention,” Mrs. Locascio added.

Ovarian cancer is the deadliest gynecological cancer, killing more than half of those diagnosed within five years, according to the ACS. Those diagnosed must typically receive a full hysterectomy, which includes the removal of the uterus, ovaries and appendix.A danger of the disease is that many women are unaware of the symptoms of ovarian cancer, which include pelvic and abdominal swelling, bloating, excessive fatigue, indigestion, frequent urination, loss of appetite, back and leg pains, shortness of breath and pain during sexual intercourse.

Mrs. Lupinacci explained that many women with ovarian cancer are misdiagnosed as having everything from lupus and kidney stones to Lyme disease and rheumatoid arthritis.“They made me feel like a hypochondriac,” she added, referring to her personal physician.

Since doctors often misdiagnose the disease, one of the missions of OCEANS is to make both physicians and patients aware of the Ca-125 blood test. The test can detect ovarian cancer by measuring the presence of proteins, called Ca-125 antigens, that occur with the high concentration of ovarian cancer cells. Patients with ovarian cancer often “shed” these proteins into their bloodstream.

Mrs. Locascio explained that many doctors do not administer the Ca-125 blood test because it is expensive and not always covered by health insurance companies. The test costs about $70 and the required sonography costs an additional $250, according to the San Francisco-based Breast Cancer Action group. An estimated 80-90 percent of women with ovarian cancer in its later stages will have signs of antigen in their bloodstreams, according to published medical reports.“Ovarian cancer has a high cure rate the earlier it is detected,” Mrs. Locascio added. “If there is a tool available to catch it in its early stages, the medical community really needs to look into making it more readily available to women.”

Mrs. Lupinacci, Mrs. Tobin and Mrs. Locascio said they have another reason for their involvement with OCEANS—their daughters. While all women are at risk of developing ovarian cancer, Mrs. Tobin explained that her daughter, as well as Mrs. Lupinacci’s and Mrs. Locascio’s, are at greater risk because of their mothers’ respective health problems.“We don’t want them to have to go through this,” Mrs. Tobin added.

For more information about OCEANS go to LIOCEANS.com
Issue Date: Southampton Press 10/21/04