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On the cutting edge of genetic testing for cancer risk

The fate of future generations of families often rests on the shoulders of Jessica Salamone.

As the genetic counselor for Elizabeth Wende Breast Care, Salamone is tasked with testing genes for hereditary cancer risk for the various generations of a family.

“The conversations that we have are really life-altering,” she said. “It’s unlike any other area of medicine. Every other area of medicine, your results are your results. Here, your results implicate your children and your siblings and your whole family.

“The thing that I often reiterate is you’re the first generation who can do something about this risk. Previous generations really just had to sit and take it for lack of a better way to say that,” she added.

Before her current role, Salamone worked in genetic counseling for a decade at the University of Rochester Medical Center.

In two years at Elizabeth Wende she has increased patient volume in the genetic counseling and risk assessment office by 300 percent. She provides in-person genetic counseling and testing for 800 to 1,000 people each year.

“If time allowed, I could see even more,” she said.

Salamone also created a community lecture series to help spread awareness about the differences between genetic/familial and sporadic breast cancers, in addition to testing protocols and insurance coverage.

“Mom’s breast cancer shouldn’t turn into a death sentence for her daughters,” Salamone said. “If we can change the tide, I may not be able to save mom but I can help the daughters get out in front of whatever that cancer is.”

Susan Berg was a patient of Salamone and found her ability to relay complex information on a humane level crucial to her care.

“She’s so brilliant, and she knows so much about genetics as it relates to cancer and yet she can explain it to you in the most clear, eloquent way,” she said. “She just has a wonderful, heartfelt way about her. She’s always right on the cutting edge of learning more and finding more opportunities and that dedication is incredible.”

When actress Angelina Jolie went public with her double mastectomy, Salamone noticed a shift in her industry.

“I started counseling in the early 2000s. What I found is it was still rare for people to talk about genetic testing,” Salamone said. “It wasn’t everyday conversation. It was something where they really had to jump through hoops (to learn about).”

Today’s patients better understand their options.

“Obviously Angelina Jolie has changed my role immensely,” Salamone said. “It makes it more attainable and it’s something they can no longer ignore.”

“As it makes it to media you’ve got an incredibly educated patient,” she added.

Despite breakthroughs in genetic testing in the last few years alone, the odds are still difficult to overcome at times. The genetics world is one of mystery, Salamone said; she tests 25 genes currently, but patients have more than 30,000.

“It is about learning the information but always leaving the door open,” she said. “A patient who has negative genetic testing doesn’t mean they don’t have the gene, it just means they don’t have a gene within the area I’ve looked at. I’m just looking at the tip of the iceberg.”

“I can work magic if you’ve got one of these 25 genes but mathematics tells me you probably don’t,” she added.

The last year was one of the most fulfilling ones in Salamone’s career because of the ability to test for more genes.

“We’re really calling back families and able to say now there’s the technology to be able to figure it out,” she said. “I’ve been able to help all of these families actually figure out what’s going on.”

Salamone finds her work invigorating. The opportunity to help families shape their futures is what energizes her work, she said.

“Every day when I walk to the car I know I helped somebody,” Salamone said. “I don’t ever have a day where I feel like, what was the purpose of my job. I don’t wonder, ‘Does any of this matter?’ Because I know that in the faces of the people I see it matters incredibly. There’s a huge amount of satisfaction that your role is helping so many people and it’s helping people for generations to come.”

3/20/15 (c) 2015 RBJ Health Care Achievement Awards. Rochester Business Journal. To obtain permission to reprint this article, call 585-546-8303 or email rbj@rbj.net.

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