Family tackles results of genetic testing for cancer risk

It takes more than one hand to count the number of women in the Hansen family diagnosed with breast cancer.

Joan Willenbring. Her mother. Her grandmother. Her aunt. Her first cousin. Her twin sister.

Yes, the family drew a bad ticket in the genetic lottery.

Willenbring and her siblings witnessed the death of their 56-year-old mother, who moved from a breast cancer diagnosis to death in just 13 months.

A genetic test confirmed what health professionals suspected: Several members of the family were diagnosed with an inherited form of breast cancer. In some cases, that means their risk of getting cancer can be as high as 87 percent. For the general population, it's about 12-13 percent.

Armed with that information, two of Willenbring's sisters, Tammy Moore and Pam Hansen, took drastic actions to reduce their breast and ovarian cancer risk by opting to have a double mastectomies and hysterectomies.

Just in the past six weeks, another sister tested positive for the gene, and Willenbring retired from her nursing job after living 14 years with ovarian cancer.

"The key to survival is to get past those three little words: 'I have cancer,'" she told the St. Cloud Times. "Once you can emotionally get past that, you go to the next phase: What are we going to do about it?"

Their story isn't a common one, but it demonstrates the benefits — and limitations — of genetic testing and counseling.

The sisters have been working with Joy Gustin, a certified genetic counselor at CentraCare Clinic for several years. With their strong family history, they were good candidates for genetic testing.

"This is really powerful information," Gustin said. "We're learning things in many of these families that can help prevent a cancer from occurring down the road ... or ensures that we're going to catch it at the earliest stages. And who wouldn't do that?"

Some genetic testing has been around for decades, but it's only recently that testing has become familiar to the public and that we have enough data to support what to do with results in many cases.

"Our goal is to empower people to have a good level of understanding to be an active part of their health care decisions," said Joy Larsen Haidle, a genetic counselor and president of the National Society of Genetic Counselors.

Testing is not going to be useful in every case. So it's best to ask the professionals: genetic counselors like Gustin who have a master's degree with training in medical genetics, biomedical ethics and psycho-social counseling.

They're prepared to deal with patients of all ages, and the life or death decisions that come with testing.

Roughly 30 percent of all breast cancers are genetic, Gustin said.

The vast majority of breast cancer is sporadic, cancers that develop later in life with no family history of cancer. On the other end of the spectrum is the 5-10 percent of breast cancer that is clearly inherited, which can raise the risk of developing cancer significantly.

Another 15-20 percent are part of a familial cluster. In familial clusters, cancer occurs more often than what would be expected in the general population, sometimes doubling, tripling and quadrupling the risk of developing cancer.

With breast cancer, cases that occur earlier in life or can be linked to family history are good candidates for genetic testing.

A positive result is generally the most straightforward to deal with.

A negative result doesn't necessarily mean a patient doesn't have to worry about cancer. And a negative may not stay negative as knowledge advances.

For example, Willenbring initially tested negative for an altered breast cancer gene. However, Gustin felt strongly that the cancer was inherited, because of the strong family history.

She was right. When a new test became available years later, Gustin asked the family if they'd like to test again. This time, it was positive.

A third result can be an inconclusive test. In that case, a variation of the gene is found but researchers don't know if it is linked to cancer or is a normal population variant. With future research, the variant could be tied to cancer and be reclassified as a positive result.

Three developments happened almost simultaneously in recent years, resulting in big changes for genetic testing, Larsen Haidle said.

Angelina Jolie came forward in 2013 to speak about her risk-reduction mastectomy after testing positive for a breast cancer-related gene. Her opinion piece for the New York Times drew enormous attention to genetic testing.

"The volume of phone calls and the volume of patients increased dramatically in the six months following her op-ed," Larsen Haidle said.

It opened the eyes of some good testing candidates, nudged others along and brought out what Larsen Haidle calls the "worried well" — people who are concerned about their health but may not to be doing anything other than standard screening recommendations.

Demand leveled off, but it stayed at a level much higher than what it had been the year prior, Larsen Haidle said. Patients also reported more support from friends and family when talking about risk-reduction surgery.

At the same time, the U.S. Supreme Court ruled that genes could no longer be patented. At that time, one laboratory held the patent that allowed them to test for a breast cancer gene. After the ruling, multiple labs could offer the option.

Finally, technology advancement meant you could test for 15-18 breast cancer genes rather than just two — for the same cost.

CentraCare Clinic employs three genetic counselors, and Minnesota has a relatively high number available. Nationwide, there are just over 4,000 in the U.S., according to the American Board of Genetic Counseling. The field has seen an 88 percent increase in the last nine years and in 2014, it was one of the top 10 fastest-growing careers.

"Just because a test is there doesn't mean it's the right test for the right person, or it's the right time," Gustin said.

"It's helpful for the public to really think through those issues before they have their blood drawn," Larsen Haidle said.

You have to be emotionally ready to do the testing and be willing to accept the results, Willenbring said.

Moore's doctor had suggested genetic testing before, but she declined. Then in February, she got her second mammogram in a row that came back questionable.

"That really for me was a trigger to a different conversation," Moore said. With such a strong family history, she ended up having a double mastectomy before she even knew she had the cancer gene.

"Watching Joan, watching our mom, watching our other sister, you really start to put things in perspective in a different way," she said.

Moore, 45, didn't think she could go through the fear and waiting that occurs when an abnormal mammograph comes back, over and over again. A mastectomy takes that possibility off the table.

"I can move on and know that breast cancer won't be in my life," she said.

Hansen had a slightly different view.

"The biggest thing was I never wanted to be diagnosed," she said. She waited until after her positive result in the genetic testing before having her mastectomies and hysterectomy.

"It was a very easy decision once I got all that information," she said.

Genetic counselors help patients decide what to do about test results.

Action can ranges from doing nothing, to aggressively screening for cancers, to preventative surgery like a double mastectomy and hysterectomy.

With inherited cancers, they talk a lot about surgery — particularly if there isn't an effective screening tool to catch cancer early. Personal history also plays a role.

With some genes, ovarian cancer risk is high. But screening isn't an option, so it's usually highly recommended that a patient have surgery to remove fallopian tubes and ovaries, or possibly a full hysterectomy.

For breast cancer, it's a different story. Screening typically picks it up at very early, very treatable stages.

But Moore had very dense breast tissue, which is difficult to screen. So she chose to have the mastectomy instead of aggressively screening for cancers.

Genetic counseling can help target health care dollars, resulting in a cost savings. For instance, knowing who needs to screen aggressively versus following normal recommendations can mean fewer mammograms to pay for. And by minimizing cancer risk or delaying its onset, money is saved on treatment.

Costs for genetic testing have come down in recent years, and if someone meets the criteria for testing, insurance should cover it. Genetic counselors can also help with getting prior authorization so testing is covered.

Currently, Medicaid will reimburse for testing. But genetic counselors are not recognized providers under Medicare, but that is being worked on at the federal level.

Deciding to have genetic testing in cases of incurable diseases presents other complications. Some people prefer not to know they might develop a degenerative disease at an early age. Others would.

Cancer has taken its toll on Joan Willenbring's family.

"It takes you a little while to get past that initial diagnosis," Willenbring said. But then you move on, asking what to do about it.

"Keep that doom away, because things are changing every year, every month in the medical community. The longer you stay alive, the more medical advances you'll be around for," she said.

Willenbring, who is no longer surgically curable, might be quick to discount how much courage it takes to be proactive, Moore said, to decide to be healthy and have a good attitude.

"I think it's so good for people to know it's a choice. You have to make a choice to live actively and positively," Moore said.

"Don't get me wrong. I get pity party days and feel sorry for myself. Those are the days I pick up the phone and call a friend," Willenbring said. "It's a path of life that I've been given. My faith helps me get through what has been handed out."

But they get through it as a family.

"We lean on each other quite a bit," Willenbring said.

Willenbring and her siblings want others facing cancer to be hopeful — and practical.

Do your recommended screenings, they say. Don't ignore symptoms and seek medical attention. Watch for scientific advances and do your research.

But don't believe everything you read.

"Life is made up of lots of unhelpful information," Moore said.

Willenbring is grateful that at least her cancer diagnoses can allow the next generation of Hansens to stay ahead of the game.

Watching their mother die gave them some perspective, realizing the role health plays in life. It was especially shocking because she was a strong farmer's wife, and they saw how quickly the disease took over her body, Willenbring said.

"Even beyond cancer ... it's the realization I have this one body to take care of and I ought to do that the best that I can," Moore said. "I don't take it for granted."

An AP Exchange feature by Stephanie Dickrell of the St. Cloud Times