Every Story Matters

Since Angelina Jolie recently shared her personal experience with genetic testing and prophylactic surgery in the New York Times, public awareness of hereditary cancer is at an all-time high. The media surrounding Ms. Jolie’s revelations has also provided unparalleled opportunities for members of the HBOC community to share their personal accounts as well.

How did you learn about hereditary cancer? Was it a chance meeting with someone who was high risk? A brochure? A TV health show? For me, it was a magazine article I read back in 1997. When I was diagnosed with breast cancer at age 33, my doctors recommended a single mastectomy on one side, but they never told me about genetic counseling or testing, despite my having several red flags for a hereditary syndrome: young onset breast cancer, Jewish background, and a paternal grandmother who died young of abdominal cancer. I certainly would have made different surgical choices if I had known I carried a mutation. The article motivated me to pursue genetic counseling and testing, and ultimately, I chose prophylactic surgery, which discovered early cancer in my healthy breast.

All of our stories are important. Each story we share and every article about HBOC raises awareness and provides an opportunity for someone to recognize himself or herself in the writing and to pursue genetic counseling, testing, and risk-management options.

In a brilliant example of how awareness can save lives, reporter Stacey Sager first shared her hereditary cancer story on WABC-TV in New York in October 2011. Stacey was on a campaign to raise awareness and save lives. A 13-year breast cancer survivor at the time, Stacey had undergone testing for BRCA and found that she carried a BRCA1 mutation. Testing and BSO saved her life. As Stacey bravely allowed cameras to document her BSO, early precancerous changes were found in her fallopian tubes. (Ovarian cancer is rarely found early, other than during prophylactic surgery.) When Stacey wrote a guest blog for Thoughts from FORCE, a reader responded with the following comment, “For years my doctors have been trying to get me to take the BRCA testing because of my family cancer history, but I simply was not ready. After watching your televised story I went to the doctor the next week for my BRCA test.”

Stacey’s story resonated with and motivated more than one person. Celebrity singer/songwriter Kara DioGuardi happened to catch Stacey’s story while in New York City while she was appearing in the Broadway production of Chicago. Kara, who was interviewed by People magazine, shared that a chance viewing of Stacey’s story changed her life. Kara knew about her family history of cancer, but she didn’t know about BRCA testing until that crystalizing moment. When she returned to L.A., she immediately sought care for genetic testing, and then underwent BSO. A dear friend who agreed to be a surrogate for Kara and her husband was implanted with Kara’s last remaining embryo from prior IVF and carried their baby to term; little Greyson is now 3 months old. Kara shares more of her story in a moving interview where she gets to meet Stacey in person and thanks her for publicly sharing her story and possibly saving her life.

Experts estimate that less than 10% of the almost 1 million people in the United States with a mutation are aware of their high-risk status. We know that risk assessment and intervention can improve survival for high-risk individuals. But people cannot take action if they are unaware of their risk. It is up to us to raise the profile of HBOC until every person has access to the tools, information, and health care experts to assess their risk, and every high-risk person has the education, support, and resources they need to make informed decisions about their risk.

In her Voices of FORCE account for our Joining FORCEs newsletter, member Lita Poehlman shared how a chance meeting with a FORCE member led her to genetic counseling and testing, and subsequent prophylactic surgery discovered precancerous changes. She credits that chance meeting with saving her life. These personal anecdotes remind us that every act of sharing is significant and every story matters!

Other publications share accounts from the HBOC community, including several  memoirs: Previvors, Pretty Is What Changes, What We Have, Apron Strings, Beyond the Pink Moon, and Pink Moon Lovelies. The documentary In the Family (which is available for free viewing online until May 26) follows the intimate story of filmmaker Joanna Rudnick and several families facing hereditary cancer. Our community blog page has links to the HBOC  blogosphere, and the Voices of FORCE section of the website is filled with your stories. You can add your story and voice to our pages. Writing and sharing your accounts raises awareness about the impact that hereditary cancer has on everyday people, inspires others to learn more, engenders compassion and understanding for our community, and saves lives.

Thoughts on Turning 50: Transformations

For many people, turning 50 is an unappreciated milestone that they would rather not acknowledge, but I feel differently. Some people find themselves going through a midlife crisis; me, I’m facing 50 by signing up and training for my first marathon!

Like most of us I’ve undergone many transformations in my life. Some have been intentional while others resulted from circumstances beyond my control. Recently while

at 26 I was neither fit nor happy

looking for old photos, I ran across some pictures of myself when I was in my 20s and 30s. I was not fit then, and I didn’t resemble the person I am now. At 50 I am the healthiest, most physically active, and most content that I have ever been in my life. Many people who have known me only in the last few years have commented that they can’t imagine me when I was not active, energetic, and happy. So running across photos of a younger me was a sobering reminder of the effort and motivation that it took for me to be where I am today.

Much of my motivation for becoming more fit was my breast cancer diagnosis at age 33 and a recurrence the following year. Both prompted me to advocate for myself and do everything I could to improve my chances of survival (increasingly, research validates the benefit of a healthy diet and active lifestyle for surviving cancer). My other motivation was my family. I lost my mother at a young age. Her weight and lack of fitness contributed to her young demise. I was determined not to repeat the same mistake; I wanted to be around as long as possible for my son!

Transforming myself to a marathon runner won’t be easy, but I’ve faced harder challenges and become stronger because of them. My most difficult transition came when I was diagnosed with breast cancer at age 33. All my life cancer had been a subject avoided or treated with dread. As I went through treatment I felt the stigma and isolation of cancer. Strangers approached me when I was out with my son, my face without eyebrows or lashes, my head without hair wrapped with a scarf that tipped them off that I was someone with cancer.  Some people offered advice or encouragement, but others treated me with pity. I didn’t like this negative attention, which left me feeling uncomfortable and devalued.

Almost as difficult was the transition to my post-cancer life. Even after treatment ended, I felt different from my friends and peers. Dealing with uncertainty about my future and post-treatment depression, I didn’t feel like I had anything to offer them. The transformation that allowed me to re-enter life, find a “new normal,” and make new friends post-cancer didn’t happen overnight. It was almost a decade before I was emotionally ready to make friends outside of the cancer survivor and previvor community.

Advocating for the HBOC community became more important and rewarding than being a vet.

My transformation from veterinarian to patient advocate was also gradual and not entirely voluntary. I wanted to be a veterinarian for as long as I can remember. Once I achieved my dream, I loved my practice and the work. I loved helping animals and people. But my motivation for founding FORCE and transitioning to director was more powerful than my love of veterinary medicine. There were many great practicing veterinarians but there was only one organization devoted to hereditary breast and ovarian cancer. My own isolation, confusion, and loneliness during my hereditary cancer journey led me to found FORCE so no one else would have to face the hereditary cancer journey alone.

Now at age 50 I’m in the best shape of my life and ready to take on a new challenge!

Now, as a 50-year-old—an age I never thought I would reach—I am ready to face a new challenge: entering the Marine Corps Marathon. My motivation is two-fold. Although I now love exercise and being fit, the demands of a marathon reach beyond fitness. It also requires commitment, discipline, perseverance, endurance, and focus. Training to run a marathon at age 50 is my way of choosing how I transition to middle age and being able to face the next half-century on my own terms. My other motivation is to benefit the community and organization that I have dedicated my life to serving. I hope that my marathon quest motivates others to try to achieve their goals. And importantly, I hope to raise funds for FORCE and encourage others to sign up for Team FORCE for the Marine Corps Marathon.

I am not a natural athlete; the photo of a younger me confirms this. If after a half-century this formerly sedentary survivor can transform herself into an athlete, anyone can do the same. I hope my efforts inspire others to pick their own goals, find their personal motivation, and pursue their own transformation.

A Healing Light From Within

Below are excerpts from our Joining FORCEs conference welcome address and a keynote talk that I recently gave in Chicago.

Fifteen years ago, there was no FORCE. Back then, hereditary cancer was scarier and lonelier than it is today.

When I was first diagnosed with breast cancer at age 33, it was caught early. I was very lucky to have been diagnosed, since I had no family history of breast cancer, and breast cancer was not on my radar. I was very conscientious about my health, and I found a lump on my very first breast self-exam at age 29. The lump was benign, but it was the reason I was having mammograms by age 33, even though I was not considered to be at high risk. My son was almost two, and Dan and I were getting ready to get pregnant again. I went down the list of things you do before getting pregnant: take folic acid, see the dentist, get a mammogram. That mammogram found microcalcification, which led to a biopsy, and then another biopsy that showed very early breast cancer called “ductal carcinoma in situ” or DCIS.  I was fortunate, as I hadn’t needed any further treatment beyond a mastectomy (unilateral), which was recommended because the amount of precancer that was throughout my breast.

I remember attending a Komen Race for the Cure walk three weeks after my mastectomy and looking out into a sea of pink caps and bald heads, and thinking “that isn’t me, my cancer was caught early.” I isolated and insulated myself and kept those other women at arms length, unable and unwilling and too afraid to define myself as someone with cancer. It made me too vulnerable and I didn’t want to be vulnerable.

Nine months later at age 34, my cancer returned in my lymph nodes. I learned that my original health care team had let me down. What they thought was early-stage breast cancer was actually invasive breast cancer that had already spread to my lymph nodes by the time of my mastectomy. Then they let me down a second time by never mentioning hereditary cancer or genetic counseling and testing. Through a chance reading of a magazine article on Hereditary Breast and Ovarian Cancer Syndrome and BRCA mutations, I learned that I carried some of the indications for genetic counseling and BRCA testing. Back then, I didn’t know how to advocate for myself to receive the best care. That lack of knowledge could have cost me my life. When my cancer recurred I knew that I only had one more chance to get it right, and I sought out the best health care experts I could find.

Like the women I saw at that first walk, I lost my hair with chemotherapy.  Suddenly, I was very vulnerable and afraid as I found myself on the other side of the looking glass, the side I had tried to protect myself from through denial and (regretfully) indifference.  While in chemotherapy I traveled to Los Angeles and stayed with a family friend. She was from a generation that didn’t like to talk about cancer. While we were out for a walk, she ran into an acquaintance, who she introduced to me. Right in front of me, nodding at my bald head, she whispered to her friend, “it’s cancer” as if I couldn’t hear her, or as if not saying the words aloud would protect her from it.

It jolted me and hit me, how different I was from the healthy world. I was a young woman with cancer. I knew that there were others like me, but I had never met them. The whispered words made me recoil, I felt diminished, stigmatized, devalued. But I also rebelled against these feelings.

With my genetic testing, that stigma grew. I learned that I had a BRCA2 mutation. Even the word “mutation” seemed alien, invasive, intrusive. How could something so dangerous and damaging be an integral part of me, of my DNA? I had to find a way to redefine and reconcile those aspects of myself in order to move forward in my journey.

I started writing a poem that I dedicated to all the people who were facing that type of stigma. I entitled my poem “Beyond Survival” because for me, surviving wasn’t enough. The poem was about transcending adversity and stigma, and becoming whole. I won’t share the entire poem but here are a few lines:

Beyond Survival

Our hearts flutter but beat strong,

with the will within us to go on.

To not just survive, but to achieve,

to aspire to inspire; to soar, to believe

that we can make a difference.

Shout it emphatically, the sound

of our existence echoes and resounds

ascends and transcends the farthest bluff,

resonates in crevices where ignorance hides

and divides us.

Do not feel devalued, do not cower.

As long as we draw breath, we’re empowered.

Despite these brave words, after finishing treatment, I suffered from depression. I was afraid that my cancer would recur quickly as it had the first time. These were some of the darkest days of my life, even worse than when I was first diagnosed, and when I had my recurrence. My family suffered with me as I didn’t have the energy or engagement in life that my husband and young toddler deserved. I wanted to be well, but I didn’t know how to get there, so I withdrew. I could have easily stayed in that world of sadness and fear, but around that time I purchased my first computer. I reached out via the Internet to others in online cancer forums, and connected with people like myself who slowly drew me out of my sadness and hopelessness and gave me courage to continue on. They inspired me, but equally important, they needed me and leaned on me for inspiration and support. It was from these women that I learned how powerful, healing, and transformative receiving but also giving peer support could be. Although I had not yet started FORCE there was this kernel of thought that my emotional healing from cancer required reaching out to others and knitting a strong community of people who could unite in solidarity and oppose the forces that would diminish us. I wrote this poem for my online support heroes.

cancer, like a vacuum,

was sucking out my joy and hope

enfolding and enclosing me in an envelope

of despair and fear. 

In the distance I saw a steady glow,

heard a chorus growing closer

one light separating into many

descending on me,

a flock of angels

carrying torches, lighting the shadows,

voices singing, arms embracing, wings uplifting me.

I became one with this throng,

a thousand women strong.

In the distance a figure huddles

and shudders in a darkened corner,

we press onward swiftly towards her;

a thousand and one angels

comfort and support our newest member.

From that lonely kernel of thought grew the organization known as FORCE. Little did I know what FORCE would grow to become and mean in my life and the lives of so many. What I did know was that something needed to be done for me and for others to feel less alone! Whisperings in darkened corners are feared. Their shadows are made larger by the lack of light. But from the time of my recurrence on, when I threw off indifference and denial, I understood that if we could shine a spotlight bright on an issue we could remove some of the fear and ignorance, and that together we are so much stronger, braver, and resilient than we are alone. Fourteen years ago I founded FORCE on the principle that no one should face hereditary cancer alone! I was tenacious and passionate in my outreach and advocacy. I did everything I could to make sure that people received the information they needed to make informed medical decisions—information that I was denied when I started my breast cancer journey.

Part of the wonder of FORCE has been the steady growth of our community since then. No matter people’s situation, they are not alone! Our members draw the same strength that I have from belonging to the FORCE community. I believe that each of us carries some type of torch within us, a flame that sparks our passion and helps ignite the passion of others; a flame that we can use to guide other people who are facing darkness and despair. By joining together we have succeeded in illuminating hereditary cancer to create hope for a brighter future for ourselves and for our families.

Previvor Day: A Solemn Celebration

In searching for inspiration for this blog, I went back to the FORCE message boards to remember when and how the previvor movement began.  When I started FORCE, long before the organization and programs grew to the national influence that we are today, we were merely a message board, a way for people in similar situations to connect virtually. The Internet was new to me then, and the ability to reach out to virtual strangers remotely and receive comfort and guidance seemed novel and amazing. When I couldn’t find the support I needed in my immediate vicinity, I could reach out over the miles, type an SOS, and get instant wisdom, advice, and compassion. I could then draw from that support when and where I needed it (and back then I needed it a lot). Over the years many of these “strangers” have been my lifeline and many have become my dear friends. Fourteen years of survivorship later, I still periodically turn to my cyberfamily, but like many who have been part of our community for over a decade, time can sometimes softened the sharp edges of fear, loss, and grief that surrounded my diagnosis, recurrence, genetic testing, and surgeries and my accompanying need for support.

It has been a while since I revisited the archives of our website. With over 300,000 posts in our current database and over 300,000 archived posts, our message boards are the single largest repository of the hereditary cancer experience. These postings are a wealth of wisdom, support, kindness, grief, and gratitude. After 14 years of advocacy, it’s easy to focus on the challenges, the frustrations, and the problems we have yet to solve. So revisiting the past is healthy, and provides me with an opportunity to remember old friends and reflect on my growth and the growth of the organization.   Occasionally I will encounter a post that stops me in my tracks and reminds me of the sacred and transcendent segments of my own hereditary cancer journey and that of our members.

The last Wednesday in September has been designated as Previvor Day, and this year it happens to fall on Yom Kippur. The convergence of the two led me to two message board posts from over a decade ago that currently reside in our Pearls of Wisdom forum, where older timeless posts live so that others can revisit them when needed.

The first pearl addresses Previvor Day. In the “I need a label” thread, our dear “Jordan,” who was a regular on our message boards back then, articulated what many in our community were feeling—that although they did not have cancer, they had experienced decisions, losses, and procedures that separated them from average-risk women, but they did not have a cancer diagnosis. Jordan posted:

“Ok, I have to admit. I need a label. Do we have one? You know, those that have the gene but have not had cancer. The ones going through all this research and deciding on proph surgeries, or not. We need more of a voice and a label, a name. I’ve never been one hung up on labels before but a lot has changed for me since this process begun. I feel if we had a label we could begin to have more of a voice. What are your thoughts? FORCE? Breast Cancer __________ (fill in the blank).” 

Jordan, and the group of high-risk women who shared her concerns, recognized that they were cancer stakeholders who shouldered a heavy burden: ongoing doctor appointments; frequent biopsies and screenings; fear; loss of relatives to cancer, and sometimes loss of breasts, ovaries, and fertility; and changes in body image, all due to the risk of cancer. Jordan also felt that uniting the segment of the community that didn’t have cancer could promote more awareness, prevention, and surveillance research, and begin to fill their huge unmet need for support and resources.

A sometimes serious and sometimes silly discussion of how to address this gap, both online and off, followed. The medical community at the time used the term “unaffected carrier” for someone who carries a mutation but isn’t affected by cancer. But in addition to sounding dismissive, that label didn’t include members of our community who were very high risk by virtue of a strong family history of cancer without a mutation, LCIS, or high exposure to radiation. Yet these people were living with the same concerns, fears, decisions, and need for support as others in our community. Eventually “previvor” (for “survivor of a predisposition to cancer”) was chosen as our label of choice, because we all felt that those living with high risk are survivors in their own right. Not everyone embraced the term initially (and many still don’t), but for that moment, previvor resonated with many and filled a need that would allow our community to unite and advocate on issues surrounding cancer risk, detection, and prevention. These issues were separate from resources and research focused on treatment but equally important.

“AmiH,” a member of FORCE’s board of directors and our volunteer webmaster, observed “that the word ‘survivor’ comes from the Latin root meaning ‘to live’.” That connection also resonated with many previvors who felt that the knowledge of their risk and the management options available to them increased their chance to live longer, healthier lives. Not everyone wants or likes a label, and we totally understand that. Some particularly dislike “previvor,” and we get that too. But being able to identify and validate an important group of high-risk stakeholders has led to a revolution resulting in much more awareness, resources, research, and support today than we ever had in the past.

The second pearl comes from a thread started by ‘SusanZ’ [Ziva] shortly after Jordan’s. “My guardian angel, a Yom Kippur lament” is one of the most heartwrenching articulations of previvorship. It captures the devastation and impact of HBOC on entire families. I hope you will read the entire thread, but here are some of the most poignant excerpts:

“Tonight is Yom Kippur. It is certainly a day to reflect on one’s own life. In the past, I have done that in a synagogue. This year I am doing that by my sister’s hospital bedside watching her die from breast cancer. I wanted desperately to ask her to be my guardian angel from heaven…I didn’t have the courage to ask this of her yet…the reality is that in her death she remains true to how she lived, she has continued to be my guardian angel by getting genetic testing. I have found out I am BRCA positive in time to protect myself. In her death she has saved my life, and the lives of many family members.”

 In a later post, Ziva writes,

“Tomorrow afternoon I have an appointment with my second PS [plastic surgeon]… and if there is no significant change in my sister’s status, I plan to walk across the hospital to his office and make that appointment. As Linda leaves this world I am going to fight to stay.”

“I am overwhelmed by your responses…Yesterday I did what I said I would. I kissed her good-bye…and marched across the hospital in defiance of this disease and met my 2nd PS [plastic surgeon].”

 and then this last heart-breaking post,

“My sister, Linda, died this evening at 6:30 as the Sukkot holiday rolled in. I closed my eyes and again asked my sister to forgive all my insults and past hurts that occur between people who love intensely, and be my guardian angel. Your support on this website has been so important to me. You are the ones who can really understand.”

Ziva and her family have remained involved with FORCE as passionate volunteers over the ensuing years, providing guidance, outreach, and support to others. Last night, 12 years after her initial post, Ziva revisited her thread and added these thought-provoking words:

“Well, it is 12 years now since I lost Linda, and all the above is still relevant and true for me. An update: I now have a beautiful and delightful 20-month old granddaughter named Maya Linda! I think she has my sister Linda’s smile and sometimes I feel Linda (and my mother) watching over us with love and grace. Maya Linda brings me the kind of joy I found so difficult to feel since my sister’s death. This is such a blessing. 

I believe there is something quite spiritual in sharing one’s stories with others who listen with respect and compassion and then listening to others willing to share their stories. In this way we can feel connected, significant, and develop courage. Thank you FORCE family for listening and sharing. Our connection gives me hope and courage.”

Ziva, thank you on behalf of all of us. As always your words have captured the essence of our community and of FORCE. This uniting of the community impacted by HBOC—those with cancer and those without—was the goal almost 14 years ago when I founded FORCE: to connect us through our shared experiences, and despite our differences to bring each of us courage, support, and hope for today and future generations.

Happy Previvor Day.

Be empowered and be well.

Sue

HBOC Week 2012: A Call to Arms

As we begin HBOC Week and approach Previvor Day 2012, I am again reminded of how far we have come and how far we still have to go in the fight against hereditary cancer.  The growth of our organization, message boards, mailing lists, and Facebook and Twitter pages tells the story: more people than ever are aware of hereditary cancer risk and are turning to FORCE for information, support, and resources. This is all good news, but at a recent meeting at the Centers for Disease Control (CDC), the Director of the Office of Public Health Genomics, Dr. Muin Khoury, emphasized that most people who are at inherited high risk for cancer are unaware of their status. Recognizing that identification of people with BRCA and Lynch Syndrome mutations and offering medical intervention on their behalf can save lives, the CDC is now working on an initiative to integrate genomic education and awareness into the states’ Departments of Health.

These programs are sorely needed. On a daily basis through our programs we hear from people who are unaware of their high cancer risk or their options to manage it. The tales we hear illustrate how much work is yet to be done. We hear of high-risk women who are denied breast cancer screening and told that they are too young to have mammograms or that they do not need MRIs, survivors who are not aware of their high risk for future cancers, and people who meet expert guidelines for genetics evaluation but are not referred for genetic counseling. Media reports on screening guidelines often omit the fact that recommendations for people of average risk are not adequate for those who fall in the high-risk range. Some vocal individuals and groups malign genetic evaluation and risk management as unimportant or overtreatment. And stories like the one recently published on BloombergBusinessweek.com show how patients pay the price when health care providers who lack training in genetics misinterpret test results.

But despite these setbacks we have had a lot of wins. Earlier this year a generous gift from Mindy and Jon Gray created the Basser Research Center for BRCA1 and BRCA2 at the University of Pennsylvania. It is the first comprehensive center dedicated solely to the pursuit of research and provision of care relevant to BRCA1 and BRCA2. The United States Preventive Services Task Force incorporated information about BRCA into their recommendations for ovarian and prostate cancer screening. The CDC’s Actions to Save Lives Now, a workshop on incorporating genomics into public health, focused on bringing the public lifesaving education and awareness, and that’s a great step forward. In a few weeks we will host our 7^th annual Joining FORCEs Against Hereditary Cancer Conference with record-breaking attendance and participation.

HBOC Week/Previvor Day logo

As today marks the start of the third National HBOC Awareness Week and next Wednesday is Previvor Day, our goal is to attract more attention than ever. Let’s focus on the positive, and use this opportunity to save lives through education. We know that risk assessment and intervention can improve survival for high-risk individuals. But people cannot take action if they are unaware of their risk. It is up to us to raise the profile of HBOC until every person has access to the tools, information, and health care experts to assess their risk, and every high-risk person has the eduation, support, and resources they need to make informed decisions about their risk.

13 Reasons to Attend the Joining FORCEs Against Hereditary Cancer Conference

Registration is now open for our 7^th annual Joining FORCEs Against Hereditary Cancer conference. The excitement is building as planning progresses for this amazing and unique event. As Course Director, I think the conference is incredible; as a participant, this is the conference that I personally enjoy the most and gain the most from attending. In keeping with our “13 Things” theme for 2012, below are 13 good reasons why you should not miss this year’s event.

 1.  We have something for everyone. Clear explanations about the science of hereditary cancer make research and medical options understandable and accessible to everyone. From explanations about basic science, statistics, and cancer to presentations on new research discoveries, the conference offers a range of information that is relevant to people with and without advanced science training.

2.  The largest annual gathering by and for the hereditary cancer community. Be a part of this landmark event.

3.  Our conference is organized to help you find the information you need the most. Conference content is aligned into tracks with sessions that are focused on all aspects of hereditary cancer.  You will find informative and inspiring sessions whether you are a survivor or previvor, you are newly diagnosed or years out from treatment or preventive surgeries. Detailed and specific information will address:

• newly diagnosed breast and ovarian cancer survivors
• long-term cancer survivors
• people still in treatment for cancer
• people who just learned they carry a mutation
• previvors
• spouses, partners, and caregivers
• people considering whether or not to have genetic testing
• men with mutations
• patient advocates
• genetic counselors
• people interested in surveillance for breast, ovarian, and pancreatic cancer
• women who are considering prophylactic mastectomy (with or without reconstruction)
• women who are considering prophylactic oophorectomy
• women who have had prophylactic surgery
• women who have undergone early menopause

4.  Medical and psychosocial resources and support. The information you gain will support decision-making and provide information about your legal rights that will help you navigate the medical and insurance systems.

5.  We bring researchers to you. You will have an opportunity to hear the latest research findings regarding detection, prevention and treatment, presented first-hand by the researchers themselves.

6.  Unprecedented networking opportunities. The conference offers plenty of time and opportunity to network with others based on your personal circumstances and geographic location.

7.  Benefit from the experience of others. Meet, chat, and bond with hundreds of others who share your concerns. Hear the poignant personal stories of people just like you who have faced hereditary cancer. Talk face-to-face with your virtual friends who have supported you on Facebook or the FORCE message boards. Our after-hours events are social gatherings that provide opportunities to share in relaxed and intimate settings.

8.  Information and support to help you make decisions about surgery and reconstruction. If you are considering your surgical options, talk to plastic surgeons and women with every type of reconstruction (and no reconstruction). Attend our “Show and Tell” session.

9.  Support for communicating genetic information to family members. Learn how to discuss sensitive issues with relatives, spouses, and adult and minor children.

10.  Enroll in research. On-site enrollment for studies that will offer better answers for the future allows participants to help make a difference.

11.  Meet one-on-one with the world’s hereditary cancer experts. Where else would you have an opportunity to ask personal questions about hereditary cancer, risk, treatment, surgery, and menopause of world experts?

12.  Bond with family members. Sharing the conference with family members is a unique bonding experience that will help them better understand the issues that you face, their own risk for cancer, and management options.

13.  Enjoy the venue experience. Centrally located in Orlando, our conference hotel offers many indoor and outdoor activities and sports – including lighted tennis courts and three full Jack Nicklaus golf courses – with proximity to all the major theme parks. The conference offers great food, relaxation, opportunities to decompress, express yourself, and play.

Visit our conference website to watch our conference video, download and print our brochure, view our agenda and speaker list, or read our Frequently Asked Questions for more information.

Guest Blogger: Knowledge IS Power

Guest blogger and Phoenix Outreach Coordinator, Lisa Edwards shares her story and thoughts on why she feels supporting FORCE is so important.

I grew up watching my grandmother, two aunts and mother battle breast cancer, each of them having it more than once.  As a young adult, I knew that I needed to be the generation that started to change things.  I wanted
a different life for my future and that of my children.  I give thanks to FORCE for helping me make that change.

When I had my PBM in October of 2008, I was the first of my family, first of my friends and first of both my general and plastic surgeons’ patients to prophylactically remove my breasts.  I had to explain what I was doing and why many times.  The universal knowledge wasn’t quite there yet but as I would learn later, I was a part of a revolution that changed the way we confront hereditary cancer risk.

Now in 2012, I am astounded by the awareness and campaigning efforts for HBOC.  FORCE and those that support it have come so far in making the BRCA mutation a household name.  Because we have made information so readily available to those around the world, I believe we are saving lives every day: both from the possibility of disease but also from the fear that plagues all of us at high risk.  With as much as we have accomplished thus far, we still have work to do.

We need more research that is specific to our hereditary risks.  FORCE knows how vitally important this is and is working hard at promoting the Hereditary Cancer Research Fund.  The funds raised are being used to gain more knowledge with new ways to arm ourselves and the future generations to come.  The knowledge I was provided by FORCE in 2008, saved my life.  Let’s continue to give this powerful gift to many more!

Visit the FORCE website to learn more about and support the Hereditary Cancer Research Fund.

13 Important Facts About Our Hereditary Cancer Research Fund

How many times have you been asked for YOUR INPUT on which types of research should be supported? As an important stakeholder in cancer research, it is your right to help guide the direction of research. Please help us advance hereditary cancer research by: reading the 13 facts listed below about our research fund, completing our short survey, and  making a financial contribution to help us realize our goal.

1. Ours will be the first and only research fund by and for the community affected by hereditary breast and ovarian cancer.
2. By completing our research priority survey, your input will help shape our research direction by helping to prioritize the research that will most likely succeed and improve patient care.
3. HBOC individuals and families represent an overburdened and under-resourced community. We require unique research that provides information and evidence-based solutions for the extraordinary issues we face.
4. As people with inherited cancer predisposition, we are significant stakeholders in cancer research but our input has been limited. Although some cancer research includes consumer input to guide direction and relevance, panels often do not include advocates familiar with hereditary cancer.
5. We have a responsibility to future generations to develop better options so our children will not have to face the fear of inherited cancer or the agonizing decisions that face us today.
6. Targeted funding for hereditary cancer research is virtually nonexistent. Many foundations support general breast or ovarian cancer research; funded studies typically focus on a single cancer type and may miss critical clues linking breast, ovarian, pancreatic, prostate, and other hereditary cancers.
7. Government research funding is limited and the process is lengthy. Competition for cancer research grants has increased over the last few years as government research funding has flattened. Government-funded research often does not start for many years after a study concept is first proposed.
8. Some groups discourage genetic testing, screening, and cancer prevention, which can shift research focus away from hereditary risk, prevention and early detection.
9. To initiate research specific to hereditary cancer and rapidly begin funding critical research, we must raise $100,000 and our goal is to endow our fund by the end of 2012.  We still have far to go to achieve this goal and need your help.
10. Current options for prevention, detection, and treatment of hereditary cancer are inadequate. Early detection is not always early enough; too many people are diagnosed with and losing their lives to hereditary cancers. Chemoprevention or prophylactic surgeries reduce cancer risk, but may cause other health problems or impact quality of life.
11. FORCE is in a unique position to identify and expedite research that will best serve high-risk individuals and families. We advocate solely for the needs of the hereditary cancer community and its research priorities.
12. FORCE has a 13-year track record of providing high-quality programs and delivering information, support and resources to the community affected by hereditary breast and ovarian cancer. During that time our mission has never wavered. We have remained focused on improving the lives of people affected by hereditary cancer. Our research fund will serve the same mission.
13. FORCE leadership includes community stakeholders who have the expertise, understanding of the challenges we face, and a passionate commitment to address the critical need for more research to overcome these challenges.

Visit the FORCE website to learn more about our research fund.

Thirteen Ways FORCE will Serve Our Community in 2012

On New Year’s Day we celebrated FORCE’s 13^th birthday! Over the course of this year, we will highlight the significance of this milestone with blogs that emphasize the theme of “13.”

As my first blog of the new year, I am excited to share 13 things that FORCE will do to serve the hereditary cancer community in 2012.

1. Our new book, Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny is a Johns Hopkins Press Health Book that is available for preorder and preview on Amazon. The book will be widely available in February.
2. This month we are launching our inaugural FORCE Research Advocate Training (FRAT) Program that will train members of our community to become engaged in research review and safety panels. Training topics include cancer 101, basic genetics, introduction to clinical trials and research, patient protection, ethics, and more.  Space is limited; however, there is still time to apply for participation. Contact Lisa Schlager (lisas@facingourrisk.org) to apply for this program.
3. Save the date for our Joining FORCEs conference: the largest annual gathering by and for the hereditary cancer community. Our 2012 conference will be held October 18-20, 2012 in Orlando.
4. Our free “Be Empowered” webinars feature presentations by experts on topics of importance to our community. Our next two webinars will be on breast surveillance and updates from the IMPACT Study for men with mutations. Please check back soon for the dates and registration information.
5. More than 50 outreach groups in the United States offer peer support, information, and resources. FORCE also has international groups. Our outreach coordinators act as a point of contact and offer face-to-face support meetings for our members.
6. Our toll-free helpline provides peer support and resources for people who are concerned about hereditary cancer. We recently also launched our helpline for Spanish‐speaking callers.
7. Our Patient Experience Contact Tool is a searchable database of surgeons who have provided services to community members, who can connect one-to-one and share information about their experiences. If you have had surgery to treat or prevent breast or ovarian cancer, please consider entering your information.  If you are facing surgery, this tool can help you get feedback and referrals for surgeons in your area.
8. Our Genetic Mutation Database is searchable by mutation and ethnicity and helps connect people who have the same mutation.
9. FORCE will honor hereditary cancer previvors and survivors and recognize the challenges they face during National HBOC Week (the last week of September) and National Previvor Day (the Wednesday of the same week). FORCE made history in 2010 with its successful effort to pass a Congressional resolution officially acknowledging these significant days.
10. Our Post Mastectomy Photo Gallery shares images of women after mastectomy and reconstruction. Coming this Spring, we are updating the gallery to allow women to post their own postsurgical photos.
11. Show & Tell: The Book will be a new resource with photos of women after mastectomy with and without reconstruction. Available in the Fall, this resource will feature the models’ personal comments about their experiences, information about their surgeries, and references to relevant chapters in The Breast Reconstruction Guidebook by Kathy Steligo.
12. We will continue to advocate strongly for hereditary cancer research. For example, it has now been seven years since we introduced our community to PARP inhibitors as targeted cancer therapy for people with BRCA mutations. (Although initial studies have been promising, due to many challenges the research has not yet progressed to trials to seek FDA approval.) Check our advocacy pages in the coming months for updates.
13. We will continue our efforts to endow our Hereditary Cancer Research Fund to make a difference and improve prevention, screening, and treatment options for people with hereditary cancer through research. Stay tuned for opportunities to provide input as we assess our community’s research priorities.

Happy New Year and Happy Birthday to FORCE

Tonight at just after midnight, FORCE and this community will celebrate our 13th birthday. It is hard to believe that it has been thirteen years since I founded FORCE, on New Years. As the new year rang in, I was sitting at my computer, fresh out of treatment and prophylactic surgery, posting on a brand-new website and putting out the call on other boards for women who had hereditary cancer or a BRCA mutation in their family to come post on the message boards. I felt alone, there was no organization, and no community that recognized the impact of hereditary cancer or that provided a sense of understanding and unity for those like me with a genetic predisposition to cancer. With my first post came the beginning of FORCE. On New Year’s every year since, I wax nostalgic about that day and about the amazing growth of this organization into the voice and heart of the hereditary cancer community, and a FORCE for support, resources, empowerment, and change.

As the new year rolls in, I will try to take some time to reflect and celebrate our accomplishments even as I look forward to new initiatives and addressing the ongoing challenges we must overcome. I hope that 2012 brings all my FORCE friends good health, hope, friendship, love, support, and well-being. May this year be the one that brings us new and better research, treatment, detection, and prevention options. May our community continue to grow. May we find new friends, honor old friends, and remember those departed. May each of us give and receive in equal measure love, support, and friendship.

For everyone reading this blog and for everyone who is part of our great community, Happy New Year my friends, and happy birthday to FORCE.