SOURCE: Colorado Ovarian Cancer Alliance

Colorado Ovarian Cancer Alliance

May 13, 2015 19:07 ET

Genetic Testing and Awareness Provide Power in Fighting Ovarian Cancer

Two Women Share Their Treatment Paths Following Genetic Testing; Jodi's Race Raises Awareness of Ovarian Cancer Symptoms

DENVER, CO--(Marketwired - May 13, 2015) - On the first Saturday of June, Katina Sommers will run in honor of her mother at this year's Jodi's Race for Awareness. When Sommers was just 16 years old, Nana Zeligman-Sommers was diagnosed with one of the most advanced stages of ovarian cancer, IIIC, and given a 20-percent five-year survival rate. Zeligman-Sommers, who beat the odds and defied medical statistics by living nearly 11 more years, worked closely with Jodi Brammeier to create Jodi's Race in hopes of raising awareness of the symptoms of ovarian cancer. Like Angelina Jolie, both Sommers' mother and aunt tested positive for the BRCA gene (a woman's risk of developing breast and/or ovarian cancer is greatly increased if she inherits a harmful mutation in the BRCA1 or BRCA2 gene). Therefore, she faced a difficult decision: should she move forward with genetic testing?

Merit Gest grew up thinking "When will I get cancer?" Her paternal grandmother -- one of eight siblings -- died of ovarian cancer; the other two sisters had breast cancer, as did some of the daughters of the family's five brothers. When one of her first cousins tested positive for BRCA1, she knew it was time to take action.

According to Lisa Mullineaux, a certified genetic counselor and a member of the Colorado Ovarian Cancer Alliance (COCA) board of directors, anyone with ovarian cancer or a close family member with ovarian cancer should have genetic testing. Women with ovarian cancer have a 15-to-20 percent chance of having an inherited form of ovarian cancer. 

Other important risk factors include individuals/close relatives with early onset of other cancers, a rare tumor or with more than one cancer, and multiple family members with the same or related cancers. Both men and women who inherit a harmful mutation, whether or not they develop cancer themselves, may pass the mutation on to their sons and daughters. Each child has a 50 percent chance of inheriting a parent's mutation.

To test for hereditary mutations, blood can be drawn or genetic material can be obtained from cells in the mouth, either by scraping or a saliva test. While testing for the BRCA 1 and BRCA2 genes is informative, Mullineaux pointed out such procedures alone are not complete or sufficient, since there are 10 or more genes involved with ovarian cancer.

"There are other gene panels that should be tested," she advised. "You still can have another inherited risk for a different kind of ovarian cancer. We always have to look at both sides of the family. And, it's important to ask if there are more tests available for hereditary ovarian cancer. Once the cause has been identified, the person can get tested for that specific risk."

Mullineaux said that genetic testing is a personal decision, and the support of a qualified professional is important. "What will you do with the information?" she stressed. "You have to feel comfortable dealing with the information. Some people are not ready; they may feel that this is fate, or they are afraid."

"I wasn't afraid to know the answer," Gest says. "I was afraid to not have the answer."

Having researched her options prior to testing, when the results showed that Gest is BRCA1 positive the young wife and mother of one son knew what she would do. Prophylactic surgery is the removal of an organ or gland that shows no signs of cancer in an attempt to prevent development of cancer in that organ or gland. For Gest, her choice was an oophorectomy (ovary removal surgery) and a bilateral mastectomy. 

While Mullineaux cautioned that no surgery reduces the risk of cancer to zero, explaining that some cells could be left behind, she said the younger the age of the patient, the less likely cancerous cells will remain.

However, if a woman is very young when genetic testing identifies a mutation indicative of ovarian cancer, Mullineaux said the choice may be not to do anything medical, such as surgery or taking medications to reduce risk, opting instead for lifestyle considerations and high risk screening. "For women, knowing that they may be at risk will help them with reproductive decision-making," she added.

"At 16, I did not feel comfortable attacking a still-absent disease by eliminating my chances of ever bearing children," said Sommers, who, like her mother and aunt before her, is BRCA positive. "While there is a pretty high chance I'll develop cancer at some point in my life, I hold strong to the concept that knowledge is power. I would rather be armed with the knowledge of my genetic makeup and have the power to make conscious preventative health decisions." Now in her mid-20s, Sommers' regimen includes yearly breast MRIs coupled with yearly mammograms to screen for breast cancer as well as running a CA125 cancer marker blood test which monitors for the presence of ovarian cancer.

"Regardless of what a woman chooses to do, that's where you get the power to make the decision that is best for you," Gest says. "What you do with the information is your choice. The power comes in knowing."

Ovarian cancer is the fifth most common cancer in females in the United States but it is the deadliest gynecologic cancer. Both Sommers and Gest concur with the Colorado Ovarian Cancer Alliance that every woman needs to know the most common symptoms: bloating, pelvic or abdominal pain, difficulty eating or feeling full quickly, and urinary urgency or frequency. An annual gynecological exam does not check for this cancer and there is no specific screening test for ovarian cancer so being able to recognize the symptoms, leading to early detection, is critical to saving lives.

COCA, whose mission is to promote awareness and early detection of ovarian cancer through advocacy and education while providing support to people affected by ovarian cancer, will host the nonprofit organization's Sixth Annual Jodi's Race for Awareness Saturday, June 6 in Denver's City Park. The annual fundraiser features a 5k run/walk, 1-mile family walk, family fun zone, expo area and live entertainment. Registration for the 2015 Jodi's Race for Awareness is underway at www.jodisrace.org.

"When family history reflects risk, even if your test is negative and no one in your family tests positive, you are still at an increased risk," Mullineaux pointed out. "Unfortunately, we don't know all the causes for ovarian cancer."

To learn more about COCA and its programs, visit www.colo-ovariancancer.org.