HARRISON, Ark. – Actress Angelina Jolie put a name to a serious, often deadly illness. BRCA is a genetic mutation that can lead to multiple types of cancer in both women and men.
A U.S. Supreme Court ruling in mid-June will help many families be able to afford genetic testing to see if they are at risk. Whether they want to have the testing, however, is a hard choice.
It's a horrible position to be in: knowing you have an 87-percent likelihood of developing cancer. It's also horrible to not know, when you could. For a family here, both of those situations are realities.
Pamela Scudder’s daughter, Shannon, lived only 34 years. She was a mother of two young children, ages 6 and 3. But, in death, she gave several women a lifesaving gift.
Scudder went on a mission to find out what. She mapped her family tree, medical style. Passed down from one generation to the next, Scudder discovered the BRCA gene traces back centuries. That’s an unfortunate find until you consider knowledge really is power.
"If they are forewarned the potential is in their families, then they can possibly do something to save lives,” said Scudder.
Scudder was not so fortunate.
"They said, ‘You have ovarian cancer as well as breast cancer,’” she said.
She started to get her whole family tested for the BRCA mutation.
"It would have saved my life potentially,” she said. "It would have saved my life because I could've taken active steps to make certain.”
"So here I am, I'm alive and I'm thankful, thankful for what she did, because, to me, that's my guardian angel," said Barrie Duck, a niece of Scudder.
Duck went on to get tested. She was positive for the gene.
“Even though I didn't have cancer, having the gene, I am what they call a ‘pre-vivor,’" said Duck.
"Both my daughters were tested. The oldest is 30, she tested negative. My youngest daughter is 23. She tested positive,” she said.
"Her thing was, ‘Why me?’ I told her, ‘I'm sorry, honey. Your family is just ate up with it and there is nothing we can do,’” said Duck.
Duck's cousin, Joni Farmer, also is positive, and battled aggressive breast cancer at only 28. Farmer's daughter, now 27, also tested positive.
"There's an immense amount of guilt that you feel if you've passed this on. And, had I known before, would I have had children? What decisions would I have made differently? I can't say," said Farmer.
"Jennifer, our other daughter, she lives in California,” said Scudder.
One of Scudder’s daughters did have time to choose.
"She has chosen to have prophylactic bilateral mastectomies; everything is removed,” said Scudder.
Life came from the life-giving family tree.
"How can you not be aware that this is going on! How can you ignore this?" asked Scudder.
Not all of the women in Scudder's family got tested for the BRCA gene.
Just about 10 percent of all breast cancer cases are linked to the BRCA genetic mutation. For those who have the gene, their chances of getting cancer are dramatically higher than for those who don't have it.