Sunday, October 11, 2009

sisterhood of the traveling genes

I have a niece that is cute and spunky, sassy and sweet, mischievous and observant and just a big old ball of fun. She loooves candy and she loooooves to torment her older sister only as a little sis can! She knows what will upset sissy and how to get her to explode or cry. But she also knows compassion and when to use it. When I ran away from brca and was in ny, the poor kid had to go thru allergy testing. I don't know any kids that like needles and I know several adults that don't care for them either. This test involves a whole lot of needles to say the least! I saw the marks and heard the story. How mom held her hand while my niece laughed (cried?) hysterically while the doc went as quickly as she could, poking each dot on her back. A promised treat helped her get thru it. That afternoon, we picked up sissy from play practice. She would be doing the allergy testing the following week. As she saw some of the marks not hidden by little sis's shirt she appeared worried and asked if it hurt. Little sis bravely said 'not really' while looking at mom and myself with big eyes as if to ask if that lie was ok to tell.

I have three sisters. Three biological sisters and I love them dearly. And I have four sister-in-laws that I adore as well. I also have a world full of rugby sisters. Some of whom I've played with or against and many, many more whom I've never met. These strangers would give me the shirt off their back simply for the fact that I was a rugger. And now I have a new band of sisters, the brca sisters. We are there to listen, support, offer advice, spread the newest findings and just to hold each others hands. We are all different and we are all alike. Some have had cancer, some have had really bad cancer, some don't ever want to risk getting cancer and some are keeping a close eye on their bodies through all kinds of testing. We are previvors, survivors and people doing the best they can to watch out for cancer. I admire them all. They are all strong and they all help me along in this journey. The previvors though, they are especially special. These are the women who go ahead with the slice and gut before anyone tells them they have cancer. They are often viewed by the general public as crazy for doing so. Extremists, if you will. Often, they are even unsupported by their families in the choices they have made. My own sister, my twin, she is considering to join the ranks of the previvors. God bless her. The previvors are also conflicted. They don't know where they fit in, in the whole cancer community. They are often unrecognized outside of the brca world. Really, this brca mutation test has not been around very long in the medical world, since 1994 or so. I certainly had never heard of it prior to this past July. I just want to share with you how the term previvor originated as written so well below by Sue Friedman, founder of FORCE.

Previvor: Past, Present, & Future

July 22, 2008

Use of the term “previvor” has become common, which, in my opinion is good for our community. Since popularization of the term increases the chance that its meaning and origin can get lost or forgotten, a post on the origins and future of the term seems timely.

I have seen some people react strongly (with intense like or dislike) to the term, which I can understand. By sharing the history and reason why the term was coined I hope to help people accept or at least understand the intent and meaning behind the creation of the term.

In 1998, after finishing my treatment for breast cancer and after learning that I had a BRCA 2 mutation, I sought out breast cancer support groups. Because of the hereditary component to my cancer, I felt that others in the group couldn’t relate to many of the issues I was facing. My needs were not entirely met by the standard cancer support group model. Along the way I met women who were high-risk because of a BRCA mutation or other risk factor but who did not have cancer. These women became my friends and inspiration; certainly they were facing difficult decisions and issues that most of their friends couldn’t understand or relate to. With a diagnosis of cancer I immediately joined an already well-established community (albeit one I didn’t want to belong to) and instant access to support and resources via great organizations such as Gilda’s Club, the Wellness Community, and local support groups. Sadly, I noticed that many of my new high-risk friends without cancer felt alone, and not comfortable with using resources and forums created specifically for people with a cancer diagnosis.

I founded FORCE in 1999 under the principle that nobody should face hereditary cancer alone. Our goal has always been to include all who have been affected by hereditary cancer: those with cancer and those without, those with a known mutation and those with cancer in the family even if no BRCA mutation has been found. FORCE was also established to provide a home and safe haven specifically for high-risk women who had very few other safe and supportive places to share their common experiences.

The term “cancer pre-vivor” arose in 2000 from a challenge on the FORCE message board by Jordan, a website regular, who posted, “I need a label!” At that time I knew that the medical community had a label: the term “unaffected carrier” is used to describe those who have a gene mutation but have not had cancer. The term applies from a medical perspective, but can be dismissive for people who face the fears, stress, and difficult choices that accompany an increased risk for cancer. As a result, FORCE developed and promoted the term “cancer previvor” for “survivor of a predisposition to cancer.” The term includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor who are living with the knowlege of being high-risk.

Over the years the term previvor has been incorporated into the FORCE lexicon. Due to the enthusiastic use by our community and the medical community’s lack of a better word, the term has slowly been accepted by the medical and research community. In 2007 a series of high-profile articles in the New York Times brought public attention to the term and the serious issues that cancer previvors face. In December 2007, Time Magazine chose “previvor” as #3 of the top buzzwords of 2007 giving millions of people exposure to the term.

What does the future hold for the term and the community? The explosion of genetics research has led to the discovery of genes that predispose people to many different diseases. One of the powerful promises of genetics research is the ability to better predict risk and develop effective strategies to prevent diseases like cancer before they develop; this is an area where we have great potential to make an impact on the wellbeing of this and future generations. With the discovery of more genes that predispose to an assortment of diseases; cancer, diabetes, Alzheimers, we can expect that more people will learn that they are at high-risk for something. And risk is a spectrum: not all risk is created equal. Someone with a 25% lifetime risk for breast cancer for example,(compared with the population risk of 12.5%) may have a different set of issues to face and choices to make than someone with an 85% lifetime risk for the disease. These emerging “previvors” will face new challenges and dilemmas that may be different from those faced by the BRCA community but which require a new set of devoted resources. Through recognition and awareness of the unique issues each high-risk group faces we can begin to address their information, resource, and research needs. Perhaps this will require the development of a government agency–maybe an “Office Of Previvorship” (OOPs for short?)–with committed resources and funding to study and try to meet the medical and emotional needs of those who have hereditary predisposition to diseases.

The development and success of the term previvor is just one example of FORCE’s continuing role in uniting and providing a strong voice for families touched by hereditary cancer. For more information on FORCE and our programs, visit our website at

1 comment:

  1. J9 - I feel the same way - this world of brca sistahs (not sure why we seem to say it that way, we just do).. it's amazing. So many differences between us, but much more similarities. It is a wierd place to be in... recovering from surgery, though I was never even sick in the first place.. all of the thoughts and well wishes seem somewhat out of place, since it's self-inflicted! The things that I will do to avoid a getting ovarian cancer. I'm glad the term pre-vivor was coined. It's a funny line we walk..we don't have cancer, but we live with cancer.. it's hard to make sense of unless going through it. I'm glad for the sisterhood of the brca as well. Glad you are finding that blogging is helping you, and that you have found this world of support. If you ever decide to come over to the dark side of facebook I can introduce you to some even more wonderful brca women. Just let me know. :)

    p.s. thank you for all of your kind words of support while I'm recovering from my 'slice and gut' option. I really appreciate it! :)