Become an Advocate for Your Own Life Through Genetic Testing
Ovarian cancer is terrifying to me. Twenty years ago, my grandmother began her descent, and an old school doctor unwilling to admit he had no idea what was wrong, led her slowly to her grave. Make no mistake, the disease, once diagnosed claimed her life in less than 2 months. That is the curse of ovarian cancer. If caught late, there is a slim chance of survival. But the long months leading up to the moment in the hospital waiting room when the surgeon announced to my grandfather that he had gotten as much of the cancer as he could, my grandmother could have been consulting an oncologist or specialist. Until that moment, no one knew.
Armed with arrogance and arcane medical practices, her general practitioner killed her. This is not an opinion that I share lightly. Her 9 children, her husband, and maybe a handful of very close friends who knew the story could not forgive this egregious negligence. One day, maybe six months later, driving by the hospital, the display had been changed to congratulate the doctor on his birthday and many years of service. I went numb.
HONORING MY GRANDMOTHER’S DEATH
I’m now 40, and have spent half of my life without my grandmother. My mom is now close to the age when her mom succumbed to the ravages of cancer. I admit that I fear for her life, as well as my aunts’ lives, and my own. I can guarantee that I will get tested for the BRCA-1, BRCA-2 and PALB3 mutations. What I choose to do after will depend on many things, but I will make a choice, and it will be an informed and well thought out choice.
Whether you criticize or applaud celebrity for bringing conversations that often stay in the dark to the forefront, making such a bold move to protect her own life and say without question “I’m going to do everything I can to live a long, long time,” for Angelina Jolie Pitt, it was an act of pure devotion to her family. Her diary of her surgery published in The New York Times helped many women understand that there are alternatives to waiting for cancer to come.
One of the most important parts of going public with her decision to have prophylactic (preventative) surgery is the entre to a discussion that for many still is not comfortable. Around the world, women are suppressed into dealing with their reproductive health silently. Girls miss school for lack of sufficient access to tampons or pads; Women in excruciating pain each month are told its normal; childbirth can still kill.
The squirming around these conversations will only erode as we chip away at cultural norms, and start to obliterate the shame associated with the human pelvis. Only then will women and men take charge of their health and ask bold questions rather than being led blindly down the wrong path, or ignoring signs that something is wrong. If you don’t like the answers, find another doctor and keep asking questions. All healthcare providers are not created equal.
PROPHYLACTIC SURGERY & GENETIC TESTING
For some, the idea of getting surgery to prevent disease is like breaking up with someone who might cheat on you. It hasn’t happened so why sweat it? However, it’s not a fair comparison. Variables within your body and the environment that can cause these genes to switch on and off are not easy to identify or control. You can find another love. You get one shot at living.
In the United States, genetic tests are performed by several laboratories, and results are reported within 2-4 weeks. Tests can range from $300 to $5,000. Many insurance plans cover genetic testing, but only once. It’s important to know that the laboratory is CLIA (Clinical Laboratory Improvement Amendments) approved and what tests are being performed. Abnormalities are detected by different tests. Gene sequencing detects most mutations, but a second test for large scale mutations or genetic rearrangements should also be conducted.
Given all of the information and enough time to make the right decision, women can have a more active role in the fate of their health, which is a far better scenario than remaining in the dark, wondering, worrying and not knowing who to trust for answers.
OVARIAN CANCER: BECOME AN ADVOCATE FOR YOUR OWN HEALTH
At The Center for Innovative GYN Care, we encourage ALL women to become advocates for their own GYN health, to ask questions, to examine their doctor’s credentials, experience, skill and how other patients felt about their own experience with him or her. We also want women to have the tools to do this.
We are exploring ways for our patients to get tested for genetic mutations so that they can decide for themselves what choices they will make as their bodies change.