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Like Jolie, I have the BRCA1 gene mutation — a link to breast and ovarian cancer that is often passed on from one generation to the next.

Unlike Jolie’s relatives, neither my mother nor my grandmother had breast cancer, ovarian cancer or the BRCA1 gene mutation. I inherited it from my father.

In 2010, my dad was diagnosed with pancreatic cancer. As doctors looked into his health history, they recommended he take the test for BRCA1.

While rarely discussed, other cancers like pancreatic cancer can also be linked to the BRCA1 gene mutation. The gene is most closely associated with breast cancer and ovarian cancer — the later usually has deadly implications given the difficulties of early detection.

When my dad disclosed he was a carrier, he advised both my sister and I to take the test. I did so with much trepidation.

A few weeks after my test, I received the call — I carried the BRCA1 gene mutation.

I was distraught, angry, scared and in disbelief. I am also a mother. I had to do something in the face of the 50 percent chance of getting ovarian cancer.

Swisher was a breath of fresh air. While noting my anger at the news, she advised I should be grateful. There are so many diseases out there that we cannot detect early. Or if we can, there is not always something we can do about it. BRCA1 is different. An oophorectomy and mastectomy, respectively, can reduce the 50 percent chance of ovarian cancer and the 87 percent likelihood of breast cancer to less than 5 percent.

I knew I was done with having children, so I addressed the risk of ovarian cancer first. As an otherwise healthy woman, I was nervous to undertake such an invasive surgery.

But I also wanted to do everything I could to have a long life with my husband and children. And with advancing technologies, my surgery included less-invasive options. I acted on my knowledge, not my fears, and made a medical decision to improve my outcomes.

On Valentine’s Day, a few weeks shy of my 40th birthday, I had an oophorectomy and hysterectomy. My risk for ovarian and cervical cancers is virtually gone. The surgery also decreased my chances of breast cancer.

Every six months I monitor for breast cancer by having an MRI or a mammogram. The stress of biannual tests is likely to lead me to a prophylactic mastectomy in the future. But whatever I choose, I will be acting based on powerful medical knowledge.

My decision has been delayed by the death of my father. His loss again drives home Jolie’s motivations, which are similar to mine. She said, “I can tell my children they don’t need to fear they will lose me to breast cancer.”

With the knowledge of my genetic mutation and surgery a couple years behind me now, I’m blessed with a new perspective on the entire experience. For Jolie, me and the millions of other women these issues impact, the key thing with learning your family history and bolstering our knowledge with genetic testing is an ability to make informed decisions and ultimately go on with our lives.

Tana Senn lobbied for federal legislation to prevent insurance and employment discrimination based on genetic factors. She is a Mercer Island City Council member.

To support Dr. Elizabeth Swisher’s “Determining Genetic Risk of Ovarian Cancer,” click here.

•   BRCA
•   Ovarian Cancer
•   Breast Cancer
•   Cancer
•   Previvor
•   It Matters to Me
•   Genetics
•   Pancreatic Cancer

Too many women have genetic testing only after a cancer is diagnosed. There are several reasons for that unfortunate delay. Not all women have a strong family history of cancer, even though they have an inherited risk. For example, some women have inherited their cancer risk from their dad, who is unlikely to have breast cancer and will certainly not get ovarian cancer. And even strong family histories of cancer may be overlooked by healthy women and their providers. The high cost of genetic testing for cancer risk is another obstacle. For instance, Medicare will only pay for cancer genetic testing after someone gets cancer, but not before.  That policy is counterintuitive when the goal of cancer genetic testing should be identifying risk in order to allow effective cancer prevention. Most insurance companies will not cover BRCA1 or BRCA2 testing for men. President Obama- your mother died of ovarian cancer and you should have testing to see if your girls could be at risk. But be prepared to pay cash.

You have probably heard about how much cheaper DNA sequencing has become in the last few years. We can already sequence all the human genes for a thousand dollars and articles abound that predict that whole genome DNA sequencing will become commonplace and facilitate personalized medicine. Then why is most cancer genetics testing done one gene at a time for many thousands of dollars? My colleague Mary-Claire King Ph.D. who discovered the BRCA1 gene in 1990, has been working with me and others to develop cancer gene panels that in a single blood test can sequence all the known cancer genes.  In my research, I have used Dr. King’s new test that she named BROCA to find the genetic cause of ovarian cancer in dozens of families. We have discovered that BRCA1 and BRCA2 are not the only ovarian and breast cancer genes, and another 15 genes account for about 30% of inherited ovarian cancer. We could test all of these genes at the same time in a single blood test including BRCA1 and BRCA2 at less than the current cost of the BRCA gene test in the U.S.. 

You might ask- if we can already do this type of genetic testing in a research setting, what is holding back a universal cancer gene test for patients?  The barrier is gene patents. One third of human genes are patented in the U.S. including BRCA1 and BRCA2. If Dr. King had won the race to publish the final BRCA1 sequence, I guarantee you that BRCA1 would not be patented today. The U.S. Supreme court has recently heard arguments from a lawsuit by the ACLU against Myriad Genetics, the company that holds the BRCA1 and BRCA2 patents. The court should rule next month on the legitimacy of these gene patents.  We already have the genetic tools to identify many women who are at risk before they get cancer and at a lower cost. Let’s hope that we can soon apply these tools rationally during clinical care to decrease the cancer burden in this country. 

What can you do?

-Know your own family history. Ask your parents and grandparents about your family history, ask who had cancer, what kind of cancer (i.e where the cancer started, not where it spread to) and at what age they were diagnosed. Share that information with your medical providers. If you are concerned about your cancer risk, ask for a referral to see a certified genetic counselor to talk about your family history.

-Protest the patenting of genes. Even if the Supreme Court does come out against the Myriad patents, it is likely to be a narrow ruling that will not apply to all gene patents. Join me in standing against patents of natural genes. Investigators that accept federal dollars for research should keep their discoveries in the public domain.

-Support medical research that increases our understanding of cancer, including how to recognize risk and tailor cancer prevention. Ask your congressman to support federally sponsored research such as the NIH and consider raising money and awareness for private cancer research foundations.

Let’s applaud Angelina Jolie. Dealing with cancer risk involves highly personal decisions. Here is a woman already in the public eye and under constant scrutiny who made an entirely selfless decision to share her story with millions.  Many high risk women like Angelina face criticism for their “drastic” choices to undergo preventive surgery. I admire Angelina for taking the unselfish view that she will do whatever it takes to be sure she will be around to parent her children. And I commend Angelina for making her decision public and thereby supporting other women who face an increased cancer risk.

Elizabeth Swisher, M.D.

Professor

University of Washington

Director of the Breast and Ovarian Cancer Prevention Program 

Seattle Cancer Care Alliance

•   Cancer
•   Ovarian Cancer
•   Genetics
•   Previvor