HUNTSVILLE, Ala. (WAFF) - No student ever said “I wish I had more tests in school.” But many breast cancer patients wish they had taken more tests before they were diagnosed.
Maybe the cancer could have been found earlier. Maybe a test could have identified them as being at higher risk for certain cancers. How is it that two unrelated 6-year breast cancer survivors have very similar extensive family histories yet doctors can’t find a genetic reason for their cancers? They both got all the right checkups at all the right times prior to having breast cancer, but one test result after their diagnosis still baffles them. Could it be wrong?
Renee Knight is a human resource manager for Aerojet Rocketdyne. She’s a communicator who knows how to use her voice to get information and answers to questions to asking a lot these days. She was 48 years old when she was diagnosed with breast cancer,
“I have two first cousins that had breast cancer. Then, just this year, my mom’s sister who is in her late 70s, early 80s was diagnosed with breast cancer. My grandmother and her sister both had breast cancer. I know that her sister had a mastectomy, but my grandmother never told anybody," said Knight.
Kim Wright is a center investment manager at NASA’s Marshall Space Flight Center. She was 45 years old when she was diagnosed with breast cancer.
“Amazingly, at the same time, the same day that I was going in for surgery, what I did not realize was that my older sister was being sent to the hospital in Memphis and was being diagnosed with cancer. We are a large family of females and out of that number there are one, two, three, four, five, six. that have been diagnosed with breast cancer with myself included, and we had an aunt who died of ovarian cancer," said Wright.
Two 6-year breast cancer survivors, diagnosed young, in their 40s, with extensive family histories of the disease. Yet, after their diagnoses and much to their surprise, they were tested for the common genetic mutations that increase a person’s risk for breast cancer and the results were surprising.
“I had the genetic testing done and there was no trace that was showing that it was genetic,” Wright said.
Knight got the same results. She rationalized and accepted the results thinking, “It skipped generations in my family,” so maybe there is no genetic link.
Determining a genetic link can be very helpful to doctors determining a treatment plan and be very beneficial to family members in understanding their risks for cancer.
So, for Wright and Knight, could their test results be wrong? Yes and no, says Dr. Sara Cooper, a breast cancer researcher at HudsonAlpha Institute for Biotechnology.
“Cancer is tricky. I think for families that have very strong family histories of cancer they can go through all this testing and we sometimes don’t find anything. That doesn’t mean it’s not there. They probably do have a genetic mutation somewhere, but we don’t know everything about all the genes yet,” Cooper said.
Cooper says this is especially true in families of African descent.
“The African-American population has more changes on average in the genome compared to Caucasians, for example, and when we sequence a gene we will find more mutations. But we don’t necessarily know if they’re important for human health,” she said.
Cooper’s goal is to find out to increase minority participation in research, change the statistics, give life-saving answers to women like Wright and Knight because very often when black women are diagnosed with breast cancer, it’s aggressive, advanced and potentially deadly.
Knight and Wright are pushing women of color toward testing for their personal knowledge and to advance research. At work, Knight is initiating more cancer conversations as a human resources manager.
“It’s a cultural thing. I think there are very many taboos that we have and a lot of times we don’t talk about health, especially serious diagnoses. My grandmother never told a soul until she was passing. We have to stop being silent. We have to stop,” she said.
Wright believes she does carry a mutation that increases her risk for breast cancer and other cancers.
“There’s something more to it. There’s more science. There’s more research that is required because there is something there. absolutely,” she said.
She hopes with more blood and saliva samples from women of color available for research, more answers, more mutations will be identified.
Two survivors who wear the pink ribbon bravely who are pushing minority participation in research to help identify the so far unidentifiable reasons for cancer’s scourge on their families and hopefully eliminating the false sense of security that comes with negative test results.
HudsonAlpha’s Information is Power Program has provided 4,000 people with important individualized genetic information. The test if free for men or women who are 28-30 in Alabama who live in Madison, Morgan, Limestone, Marshall and Jackson counties. The test is also available to others in and out of Alabama and outside that age group.
HudsonAlpha is encouraging families of African and Spanish descent to be tested.
Find details at https://hudsonalpha.org/information-is-power/.
Some other informative links are:
It is also important to know more about GINA, the Genetic Information Nondiscrimination Act. GINA makes it illegal for health insurers or employers to require or ask an employee his/her genetic status. GINA does not cover life, disability or long-term care insurance.