If my mom had known more, she would still be alive.
If she’d known the breast cancer she battled 15 years earlier would return, Lise Thevenet would have had a mastectomy and would not have gotten sick again. By the time she realized she could have prevented her cancer’s recurrence, shortly after Angelina Jolie’s announcement of her own double mastectomy, it was too late for Lise. The metastatic cancer had not only come back, it had spread so quickly and effectively that it was inoperable.
I lost my mom in 2013. A few weeks before her death, at age 56, she took my hand and made a simple, profound request: that I get tested for the presence of the gene mutation that all but predicted her cancer’s recurrence: BRCA-1.
What followed was a journey from grief to resolve: from my quest to advocate for my health to a frustrating epiphany about the limitations of modern medicine. The journey inspired me to empower women to take their health into their own hands. My Mom may be gone, but her legacy is alive.
When I asked my doctor to fulfill my mother’s dying wish, I was 22 and “too young” to worry about breast cancer, my OB/GYN insisted. The same doctor had dismissed the idea that my mom consider a mastectomy after her first battle with breast cancer at age 41, citing a “less than one percent chance” that it would recur. In those days, most people didn’t know that breast cancer was hereditary. But the cancer returned to her lymph nodes, her breast wall cavity, her lungs, liver and kidneys.
I was determined to ensure my mother didn’t die in vain. What I didn’t know then was how hard I would have to fight to save my own life. I had to battle to get tested for BRCA-1 (I was positive), then again for a mammogram after I discovered lumps in my breasts (they were pre-cancerous.) At just 24, I faced a terrifying decision: should I have my own breasts removed? My doctors called it unnecessary. My aunt told me no man would ever love me. But I persisted. I found a new career path, and a source of wisdom and support that I am recreating for women around the world.
I had applied for a job with Bright Pink, the only national nonprofit with a focus on prevention and early detection of breast and ovarian cancer in young women, and after a Skype interview, I flew to Chicago to learn more. What happened next gave me the courage to make a choice that would change my life.
In Chicago, I met a dozen breast and ovarian cancer survivors and previvors, ranging in age from 18 to 60. Many of them had undergone the same procedure I was considering. “These were all smart, beautiful, strong, successful women. They looked normal, they acted normal. They were thriving.” I decided then and there to have a preventive double mastectomy, which confirmed I had breast cancer. I also decided to create a network just like the one I found in that conference room—one that gave me the courage to have the surgery that would save me.
I spent the next five years working in health care, as a national education ambassador, a patient speaker and, ultimately, a hereditary cancer specialist for some of the country’s leading organizations. I met women and physicians across the country who either didn’t know or who dismissed the importance of genetics in early cancer screening. I realized doctors simply don’t have enough time to properly evaluate or educate their patients, and that women are overwhelmed by a crush of conflicting information available to them on the internet and frustrated that their concerns and questions are so routinely disregarded. I created Gabbi, a mobile app that provides women with both an information portal and an online community that bolsters the knowledge and support we need to understand our risks and to take control of our health.
Why It is Important to Be Proactive
When you know what is normal for you, then you know when something is abnormal.
Physicians simply do not have the bandwidth to spend enough time with us or educate themselves on medical advancements in every facet of health. By educating yourself and getting to know your body, you decrease the gap for error to occur. Just this last March, I had received a result from a transvaginal ultrasound that was suspicious. I have a high risk for Ovarian Cancer so I regularly receive tests. Although the physician was confident it was not cancer, it caused a pause. Because I knew my risks and knew my options, the conversation with my physician after that result was very different than when I had to fight for a mastectomy. I was able to articulate my concerns, why I was concerned, my symptoms, and the solution I wanted. She acknowledged me as an expert, as a partner in securing my health, and immediately said, “Ok!” 3 weeks later I had a preventive, partial BSO removing my fallopian tubes and one of my ovaries. The pathology did not show cancer like it did when I had a mastectomy, however it was the best decision for me. I truly believe none of that would have happened had I not been informed and proactive. At the end of the day, we should be the experts on our body. Because knows your body better than you?
Things you can (and should) do to be proactive:
Know your risks! As of now, it is difficult to figure this out. But at Gabbi we are out to help solve this problem! Go to www.begabbi.com and sign up to stay informed when we launch!
If you have breasts, you should be performing a self-breast exam once a month. 90% of breast cancers are detected by the woman herself and then confirmed by a doctor. By creating a regular habit of examining your breasts, you establish a baseline of what is normal for you which allows you to notice when something is off and then take action. Furthermore, if you do find something, you are able to have an informed conversation with your physician and you are equipped with data to support your conversations.
Get to know your vagina! Because there is so much stigma associated with women’s bodies, especially our vagina’s, women are not taught to explore it. It is a whole hidden world! By getting to know the ins and outs of your vagina, the opportunities this allows you are the same as with getting to know your breasts. You are able to establish a baseline of what is normal for your vagina, and therefore know when something is off. This has many benefits when applied to your vagina:
- It allows you to be proactive and catch something early or make decisions to change something.
- It allows you to better know how to pleasure yourself
- It allows you to better know how to teach your partner to pleasure you!
- It overall makes you more in tune with your body
Eat/buy quality meats and produce. There are many things that you can do by being conscious about your diet, but one of the easiest is probably demanding high quality ingredients. Know where your food comes from and make sure there are no additives or pesticides.
Get 30 minutes of exercise 5 days a week. The idea is to get your heart rate up for a few minutes multiple times a week. Sometimes it is difficult to even get this in, so an easy way to get a little more movement than usual is to park far away when you are going to the grocery store, the office, etc.
Ladies, please keep up with Gabbi on Instagram, Twitter (@begabbi) and LinkedIn. I can promise you, this girl has more passion and drive than anyone I know and she's going to do BIG THINGS!