Tammy Moore, center, talks with sisters, Joan Willenbring, right, and Pam Hansen at Hansen's home in St. Joseph, Minn. Moore and Hansen opted to have mastectomies and hysterectomies after a history of breast and ovarian cancer in their family.

St. Cloud Times photo / Kimm Anderson

Tammy Moore, center, talks with sisters, Joan Willenbring, right, and Pam Hansen at Hansen's home in St. Joseph, Minn. Moore and Hansen opted to have mastectomies and hysterectomies after a history of breast and ovarian cancer in their family.

Sisters show screening’s value

By Stephanie Dickerell

St. Cloud Times

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ST. CLOUD, Minn. – It takes more than one hand to count the number of women in the Hansen family who have been 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 just 13 months after she was diagnosed with breast cancer.

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 percent to 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,’” Willenbring said. “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 of cancer, 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 such as 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 percent to 10 percent of breast cancer that clearly is inherited, which can raise the risk of developing cancer significantly.

Another 15 percent to 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 family members 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.

“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,” Haidle said.

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