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'Pre-vivor' | Genetic testing helps Tulsa mom get ahead of cancer

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TULSA, Okla. — An Oklahoma non-profit 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 to fully cover genetic testing for people with a family history of breast cancer.

A Tulsa woman recently underwent preventative surgery because of that testing and said it is a gift.

Family time is crucial for Jen Kerckhoff. Whether going over schedules in the kitchen or catching up with her twins over cards, her family means everything to her.

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

WATCH: Woman raises awareness for uncommon breast cancer treatment option

Woman raises awareness for uncommon breast cancer treatment option

Kerckhoff first 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 that criteria just due to the cells that they kept finding and all of these issues that were occurring and also having a family history,” said Kerckhoff.

That’s when her confusing health picture because crystal clear. She tested positive for the PALB2 gene mutation.

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

After months of research and doctors’ visits, she decided on a preventative full hysterectomy and a double mastectomy. Dr. Laurie Flynn performed her double mastectomy.

“Being a breast surgeon isn’t just about the operation. It’s about getting to the right operation for the person,” said Dr. Laurie Flynn.

Dr. Laurie Flynn is a breast surgeon with theOklahoma Cancer Specialist and Research Institute. She said for many women who don’t currently have cancer but may have a mutation, genetic testing and counseling can be crucial in their path to health. 

“The individuals who have DNA mutations are more likely to have cancers develop between mammograms,” said Dr. Flynn. “It’s so lovely that we have a way to help these individuals, 'pre-vivors,' individuals who have a risk of cancer, yet they do things about it to make them a 'pre-vivor.'"

She doesn’t push people into having a double mastectomy but said the testing and counseling provide critical information that can be life-changing.

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

It’s the reason non-profit Susan G. Komen is pushing to have this genetic testing more accessible for people with a family history of breast cancer or an increased risk of breast cancer.

“It will change the trajectory of where these women’s lives may be,” said Shari Holdman.

Susan G. Komen Oklahoma and Arkansas Executive Director Shari Holdman said while their bill ran out of time this legislative session, they’ll have it ready next session and hope it’ll be signed into law.
 
“So, at this point, somebody would have to pay a co-pay or out of pocket with insurance, and you all are hoping that this bill would make it free with insurance,” asked 2 News.

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

She said it removes barriers and help save lives.

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

Back at Kerckhoff’s home, she said her surgeries were extensive and required about two months of downtime. Ultimately, she said the testing provided a gift to her and her family.

“It was a couple of months, but the long-term opportunity of health and happiness and love is absolutely priceless,” said Kerckhoff.

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

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

“Like isn’t that crazy?” said Dr. Flynn. “That’s such a dramatic risk reduction.”


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