Tulsa mom talks about importance of affordable genetic testing to prevent breast cancer

TULSA, Okla. — An Oklahoma nonprofit is already looking ahead to the next legislative session in an effort to get lawmakers to remove barriers to health care.

Susan G. Komen is working on a bill that would fully cover genetic testing for people with a family history of breast cancer. A Tulsa woman had preventative surgery because of that test and says it was a gift.

Family time is crucial for Tulsa mom Jen Kerckhoff. Whether it’s going over programs in the kitchen or catching up on her twins in books, her family means everything to her.

“I thought if I can make this investment in my life and my time now and I have this opportunity, I don’t want to miss it so I have endless time with my family,” Jen Kerckhoff said.

Family was most important to Kerckhoff when he started having problems two years ago.
Doctors found cysts in her breasts that kept coming back. She had mammograms, biopsies, scans and MRIs. It wasn’t cancer, but it was a big enough concern that her doctor recommended genetic testing.

“For me, I met a lot of those criteria just because of the cells that they kept finding and all these problems that came up, and they also had a family history,” Kerckhoff said.

Then her confused picture of health because it is clear. She tested positive for the PALB2 gene mutation.

“That specific one affects your chances of ovarian cancer, breast cancer and pancreatic cancer,” Kerckhoff said. “I really wanted to know all my options now that I knew I had that mutation and it was going to be something I would carry with me for the rest of my life.”

After months of research and doctor visits, she decided to have a preventative full hysterectomy and double mastectomy. Dr. Laurie Flynn performed her double mastectomy.

“Being a breast surgeon is not just about surgery. It’s about getting the right surgery for the person,” said Dr. Laurie Flynn.

Dr. Laurie Flynn is a breast surgeon at the Oklahoma Cancer Specialist and Research Institute. She said that for many women who do not currently have cancer but may have a mutation, genetic testing and counseling can be crucial in their path to health.

“People who have DNA mutations are more likely to have cancers develop between mammograms,” Dr. Flynn said. “It’s so nice that we have a way to help these individuals, ‘pre-vivors,’ individuals who are at risk of cancer, but they’re doing things about it to make them ‘pre-vivors.’

She doesn’t push people to have a double mastectomy, but said testing and counseling provide essential information that can be life-changing.

“Here are your options. Now, that’s what I recommend, but what do you think is right for you based on these options?” Dr. Flynn said.

That’s why the non-profit organization Susan G. Komen is pushing to make these genetic tests more accessible to people with a family history of breast cancer or at an increased risk of breast cancer.

“It’s going to change the trajectory of where these women’s lives could be,” Shari Holdman said.

Susan G. Komen Oklahoma and Arkansas Executive Director Shari Holdman said that while the bill expired this legislative session, they will have it ready in the next session and hope it will be signed into law.

“So at this point someone would have to pay a co-pay or out of pocket with insurance and you’re all hoping this bill will be free with insurance,” 2 News asked.

“Absolutely,” Holdman said. “Absolutely. So it removes that cost-sharing opportunity and really allows the patient to get the answers and the care and the kind of future determination that they know they need.”

She said she would remove barriers and help save lives.

“It puts that control and that autonomy back in the hands of the patient,” Holdman said.

Back at Kerckhoff’s house, she said his operations were extended and required about two months of downtime. Ultimately, she said the testing provided a gift to her and her family.

“It’s been a few months, but the long-term opportunity for health, happiness and love is absolutely priceless,” Kerckhoff said.

Holdman said that depending on where the genetic testing is done and your insurance, it could cost thousands of dollars out of pocket.

Dr. Flynn said that after preventive surgery, the chance of getting cancer drops dramatically from about 80 percent with some of these mutations to just 3 percent.

“It’s not that crazy,” Dr. Flynn said. “It’s such a dramatic reduction in risk.”

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