The choice no woman wants to make

Here is a rendering of the protein coded by the BRCA1 gene, early onset.
Here is a rendering of the the protein coded by the BRCA1 gene, early onset.

About one in every 400 to 500 people carry a potent mutation to a gene, incredibly increasing their odds of having breast cancer to as much as 85 percent and ovarian cancer to more than 50 percent. If that person happens to be Jewish and of Ashkenazi heritage, meaning their relatives come from northern and eastern Europe, their chances of carrying the mutated BRCA1 or BRCA2 (BReast CAncer) gene, which suppresses tumors, jumps to one in 40.

So much for being the chosen people. Getting tested for the mutated gene and taking bold steps to reduce the chance of getting breast or ovarian cancer came into the limelight this spring when Oscar-winning movie star Angelina Jolie opted to have a double mastectomy without ever being diagnosed with breast cancer. Knowing her mother had died at 56 from ovarian cancer and then learning she had the inherited BRCA gene, Jolie decided to have the mastectomy to reduce her chances of getting breast cancer from 87 percent to a mere 5 percent.

With genetic counseling and advanced testing, women and men can make educated medical decisions and decide for themselves how they want to handle the nagging knowledge that being afflicted with breast or ovarian cancer is something they can almost take to the bank. A two-part program at the Jewish Community Center of Greater Washington in Rockville on Oct. 9 and 16 entitled Hereditary Cancer: Knowledge is Power will feature a panel of experts, including a genetic counselor, a gynecological oncologist and an Orthodox woman who was diagnosed with breast cancer when she was only 25. There also will be individual counseling sessions offered.

Because roughly 1 million people in the United States have a mutated BRCA gene but only about 10 percent realize it, Ashkenazic Jewish women who know of an aunt or a grandmother who died of
cancer are encouraged to attend the free event.

Lisa Schlager, of Chevy Chase, didn’t give cancer a thought. She was 31 years old, newly married and feeling invincible. Then, in 1999, her father’s sister was diagnosed with breast cancer.

Schlager’s aunt called her and asked if she would be willing to participate and be tested in a study on Ashkenazi women. Back then, a blood test was given but now a person can be tested through just their saliva.

“In some families there is cancer everywhere, and it can be very scary. As far as I knew, my aunt was the first one in our family to have it, and they caught it very early,” she recalled during a phone interview last week. Therefore, her reaction was sure, I’ll go for the test if it will help someone else, she said.

Today, test results come back in two to three weeks, but it took a few months back then, and Schlager said cancer was barely on her mind during that time. That is, until she learned she had the BRCA1 gene mutation, inherited either from her mother or father.

“That was a real wake-up call with me. I had no children yet. I was newly married. For the first time in my life, I didn’t feel invincible,” she said.

There are three options for people in Schlager’s position. They can opt for close scrutiny, getting frequent mammograms and breasts scans and going more often to their doctors.

They also can opt for preventative chemotherapy, which carries a smaller dosage than that given to people with cancer. Lastly, they can opt for preventative surgery involving the removal of at least one body part but often several including ovaries, fallopian tube, uterus and breasts. Schlager was told to go home, start a family, and to return when she turned 40. She agreed with that while opting for the increased surveillance. She carried on with her life and had two children by the time she was 36.

“As I approached my 40th birthday, I was beginning to realize I was going to have to take this much more seriously,” she said. Mulling over her choices, she considered having her ovaries removed, even though it meant entering into “immediate and abrupt menopause, like jumping off a cliff.”

While still deciding, doctors “found a suspicious lump in my breast and did abiopsy.” Next thing she knew, she was being told she had precancerous cells. That was when it hit her that “it was becoming not an if, but a when.” “That’s a terrible way to think. I just had this overwhelming feeling I was playing Russian roulette,” she said.

She soon had her ovaries removed. This was in 2006. The following year, she had a bilateral mastectomy, opting for the type where the skin is left alone but the tissue is removed. She also chose to have breast implants and happily reports that “my breasts look better than they did before.”

As difficult as all this was for Schlager, she believes that being told she had the mutated gene “was a blessing. I feel like it was gift.”

100313_breastcancer1She is on a bit of a crusade to help other women gain this knowledge. She works with FORCE (Facing Our Risk of Cancer), a virtual clearinghouse of information for women having to make difficult medical decisions once they learn they have the mutated BRCA gene. FORCE is partnering with the JCCGW and Myriad, a molecular diagnostic company, for next week’s programming.
Still, for all she has been through, Schlager would never tell another person what to do. “It’s a very personal decision. Everyone needs to make their decision based on where they are in their life. I try not to judge. It’s a tough issue, and you have to figure it out for yourself.”

There are many things to consider, like your age, whether or not you have children and even the risk of being denied life insurance once it is known that you tested positive for the gene mutation.

Beth Kaufman didn’t have a lot of time to make her decision. She knew she had a family history of cancer, going back “probably to my great-grandmother.” But no one ever told her to get tested, and “I didn’t even now what the test was,” she said.

Then the mother of two daughters was diagnosed in 2008 with breast cancer when she was 49 years old. While she was receiving chemotherapy, she learned of the BRCA test, and both her and her younger sister agreed to take it.

Kaufman, of Greenbelt, soon learned she had the BRCA2 gene mutation and recalls looking at her doctor and saying, “Make mine a double.” She knew right away that she wanted to have both breasts removed, not just the one that had the cancer. That comment became the title of her self-published book that tells the story of her incredible medical journey, including so many horrific details, with a fantastic sense of humor.

“I didn’t like my odds at 87 percent,” she said, which was what she was told having the BRCA2 gene meant.

“Jewish people have 19 genes that can kill us. We did not get the designer genes. We got some ugly genes,” she said. Actually, Jews aren’t the only “chosen” ones. According to the National Cancer
Institute, the chances of having the harmful BRCA1 or BRCA2 gene also is highly elevated for Norwegian, Dutch, and Icelandic peoples.

Within a short time, she endured a bilateral mastectomy, 33 straight days of radiation followed by four months of chemotherapy, and also the removal of her ovaries. She is currently undergoing a new medical procedure that gradually stretches the skin around her breast and also removes fat from other parts of her body and relocates it to her breast, thereby creating a natural breast.

She had her ninth surgery last month.

“The good thing is, I shouldn’t be here at all” and yet she has watched her daughters grow, recently taking her oldest daughter to Kent State in Ohio to begin college. Her younger daughter is an 11thgrader in Edgewater.

Her oldest daughter wanted to take the BRCA test, but a genetic counselor convinced her to wait until she graduated college. “What is she going to do at 18 if she’s positive, take both breasts and ovaries and not give herself that chance” of ever having a child? wondered her mother. “If you can get kids to their mid-20s, they can make an adult decision better than that teenage decision.”

She hopes that neither of her daughters ever have to go through what she has dealt with. Still, the decision to have a pre-emptive medical strike “is hardly a no-brainer,” she said.

Kaufman recommends people get tested and would love to see more groups speaking out about this. “I would like to try and get into every Hillel I can and catch them young,” she said. “My advice to all these young kids, don’t do drugs. Stay away from the frat parties and the football team and get tested.”
Kaufman grew up in Silver Spring and spent three nights a week studying at the nearby yeshiva, but her religious feelings have changed. “When you are so sick, other things take precedent,” she said.

A sense of humor is very important to her, she said, joking that her late mother would be proud that “I have met some nice Jewish doctors.” After all, when you are bald and the wig you buy gets lice, what else can you do but laugh? she wondered.

While both Schlager and Kaufman wholeheartedly believe in testing, Beth Peshkin, a professor of oncology and the senior genetic counselor at Georgetown Lombardi Comprehensive Cancer Center, doesn’t believe all Jews should immediately run out and get tested. It’s important to consider a person’s family history and the types of cancer experienced.

By speaking with a genetic counselor first, a person can be sure to get the right screening. BRCA1 and BRCA2 are not the only things to test for and may not even be the right for a person, even though they are Ashkenazic and have a family history of cancer.

A genetic counselor can guide a person to either wait or go for the test as soon as possible, depending on such variables as when a family member was first diagnosed with cancer and whether it was ovarian or breast cancer, said Peshkin, who is the education director at the Fisher Center for Familial Cancer Research.
It’s important to understand the risks, Peshkin stressed. While some studies say the chance of getting cancer increases to 87 percent over a lifetime for those testing positive for the BRCA gene mutation, other studies, particularly ones including people without a strong family history of cancer, place the elevated risk at between 40 and 75 percent, Peshkin said.

“Anyway you slice it, it’s much higher,” she said.

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