In honor of National Previvor Day, which is tomorrow, we are featuring the guest post below by author Dina Roth Port who wrote the book Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions.
For information on how and why FORCE coined the term Previvor, and gave this important community of stakeholders a voice and a name, read the Previvor: Past, Present, and Future blog from 2008 and visit our previvor page on FORCE.
Previvors Have Come So Far—But Still Have a Long Way to Go
by Dina Roth Port
In 2010, the U.S House of Representatives declared the last week of September National Hereditary Breast and Ovarian Cancer (HBOC) Week and the last Wednesday of the month National Previvor Day. Needless to say, this was a huge feat for the previvor community—men and women with a high risk for cancer finally felt like their voices were being heard. With heightened awareness comes funding and support which, in turn, can lead to more research and better options for the millions of people at risk.
And as we prepare to celebrate the second annual HBOC Week starting September 25th and Previvor Day on September 28th, it’s amazing to look back and see how far we’ve come.
As always, FORCE has done so much nationwide to help spread the word. And if every fundraiser, educational event, teleconference and newsletter enlightened just one more person, then each one was a success.
However, we sadly have a long way to go. The truth is, most people who are previvors don’t even know that they are. For instance, though about 1/500 men and women have a BRCA mutation, less than 10% of people know that they do.
Those of us who are involved with organizations like FORCE know all about risk. We’re educated. We’re empowered. But what about the men and women who have no clue that they have a high risk for cancer? Or the ones who know they’ll likely battle the disease in their lifetime but don’t know how to protect themselves. How do we reach them?
In my book, Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions, I describe the many options we have today to defend ourselves against hereditary cancer—surgical and nonsurgical options that were not available just a few decades ago.
But what’s the point in having these great medical advances if we’re not taking advantage of them? The problem is that most people don’t know about their cancer risk so they’re not increasing their surveillance, meeting with genetic counselors, or taking steps to lower their risk. Many doctors aren’t talking to their patients about risk, and the patients often don’t even know the questions to ask.
So what’s the solution?
We need to remember that we’re all in this fight against cancer together. We must start a national dialogue about risk. Whether it’s a book, a blog, or even just talking to a few loved ones, we can all help educate others. Tell people about the fears and concerns you have living with a hereditary risk for cancer. Have a candid conversation with your primary care physician and/or gynecologist. Make sure they understand the risk factors for hereditary cancer. Tell these doctors about the National Society of Genetic Counselors, so they can refer patients to such experts in their area.
Introduce family member, friends and neighbors to FORCE and all that it offers. Teach them about the word “Previvors.” It’s a word that conveys hope. It’s about choosing empowerment over fear.
There’s so much we can do together to inform the countless previvors out there who are still in the dark. And bit-by-bit, with each National Previvor Day, we’ll continue to fight cancer before it strikes and take charge of our health in ways that previous generations never could.
Help FORCE educate and support previvors by printing off and sharing our new previvor flier.