Sizing Up Your Genes

What I appreciate about Angelina Jolie Pitt's candidness about her decisions is that she opens up the conversation and brings women's health issues top of mind. Everyone seems to zero in on breast cancer and not nearly enough people focus on the cancers that can brew "down there."
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Once again Angelina Jolie Pitt made headlines with her New York Times op-ed article "Diary of a Surgery" addressing her decision to undergo prophylactic surgery to remove her ovaries and fallopian tubes. She chose to have the operation after her physician informed her that inflammatory markers from a test may point to ovarian cancer. Jolie Pitt's mother, grandmother, and aunt all lost their lives to cancer.

In 2013, Jolie Pitt revealed her decision to undergo a prophylactic bilateral mastectomy with reconstruction as a safeguard against breast cancer. As a carrier of the BRCA1 gene mutation she had an estimated 87 percent risk of breast cancer and 50 percent risk of ovarian cancer.

There is no screening method for early detection of ovarian cancer. Sadly, it is often diagnosed at an advanced stage. Symptoms may be attributed to other conditions and ignored by the individual.

You may ask, "Why would someone undergo a surgery to remove healthy body parts and organs, radically changing her body, when she has not been diagnosed?" You may applaud her for taking such a courageous preemptive measure. You may snark, "Well she can afford it. Most people cannot."

It's a personal decision. I don't think anyone should A) criticize or judge others for their choices, and B) make hasty decisions about their own health. It is important to evaluate with your physician your family history, current health, potential risks, and all outcomes and consequences for whatever decision you make. This includes how it impacts you, your family members, and your future family if you are planning one.

People who find out they carry a genetic mutation that could lead to a fatal illness for themselves, or that they can pass down to their children, carry that thought in their minds forever.

I tested positive for the BRCA2 genetic mutation. This was after I was diagnosed and treated for breast cancer at the age of 50. Even though there was no family history of breast cancer, my father had prostate cancer and melanoma, and his mother had pancreatic cancer. Both are also connected to the BRCA genetic mutation. My doctor explained my test results to me and noted that my risk for ovarian cancer would be greater as I grew older. I chose to have my ovaries and fallopian tubes removed. Health insurance covered the cost; I was lucky... well, sort of... I had to have breast cancer first to prompt the decision to undergo genetic testing. Otherwise genetic testing would not have crossed my mind; I would not have considered spending the money or even wanting to know. Breast cancer changed that. I would do most anything not to return to that "ground zero" of my life.

Because I was in menopause, the decision to have the surgery was easy for me. I no longer needed my ovaries, and I did not want to live with the worry of having ovarian cancer. But for many the decision is not that easy. And I still live with a concern about pancreatic cancer in back-of-mind. Pancreatic cancer is often called the "silent disease" because it can manifest inside of you and often goes undetected until it is advanced.

Genetic testing does not apply just to cancer. It is something to weigh with other hereditary illnesses, from Tay Sachs to Cystic Fibrosis. In the movie "About Alice," Julianne Moore's character, facing early onset Alzheimer's Disease undergoes genetic testing as do two out of her three children. One finds out she is a carrier; the other is not. The third chooses not to have the test. Some would rather not know.

As someone who faced the decision herself, here are some things to weigh when considering genetic testing:

1. If you test positive it does not mean you need to resort to preemptive surgery in the case of your breasts or your ovaries. There are options such as surveillance and more frequent testing. You should ask your doctor who can also refer you to a clinical genetic specialist to discuss the latest tests and surveillance protocol.

2. You can ask about participating in research programs but realize these may not be covered by your health insurance. You need to ask your health insurance provider first. Make sure you have the exact names of the tests and reason(s) for undergoing them in writing from your doctor. I find it pays to call your health insurance carrier first and request from them in writing what us and is not covered.

3. If you are of child-bearing age you need to weigh the fact that you could pass the mutation to your children, but there is no guarantee. One sibling could have the genetic mutation and the other may not.

4. Removing your ovaries takes you into menopause and all of its wonderful side effects. Aside from no longer being able to conceive children, you may experience changes in skin texture, hair thickness, hot flashes, memory issues, moodiness and decreased sex drive. As someone who was diagnosed either estrogen receptor positive breast cancer, I personally am not a fan of hormone replacement therapy. Again, it is a personal decision based on your bio-individuality.

5. Finally, you need to realize that if you test positive for BRCA1 or BRCA2 you may be at risk for other cancers such as melanoma, colon cancer and pancreatic cancer. This means you need to be vigilant about taking care of yourself with a healthy diet, exercise, manage stress, wearing sunscreen and regular exams. Unfortunately in my case it also means every stomachache and gastro-intestinal episode puts me in a tizzy of fear that my pancreas is going to the cancer dogs. And I spend way too much time staring at spots and dots on my skin.

What I appreciate about Angelina Jolie Pitt's candidness about her decisions is that she opens up the conversation and brings women's health issues top of mind. Everyone seems to zero in on breast cancer and not nearly enough people focus on the cancers that can brew "down there." Have you ever seen an image of a uterus on a T-shirt with a cutesy nickname or slogan?

Also realize it may be a conversation you want to have but other family members may not want to hear. Some loved ones may not feel the same way you do about knowing the outcome. Approach the topic with sensitivity.

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