What a difference a decade makes

I watched CSPAN with a sense of pride and awe as the House of Representatives voted on and passed HR 1522, designating National HBOC Week and Previvor Day. It is a day that has been 11 years in the making. It has been a long, exciting, sometimes frustrating and (now) gratifying journey that required tenacity and hard work. FORCE started the ball rolling, and we are proud of that.

In FORCE’s early days, fighting for awareness of HBOC and recognition of previvors as important stakeholders was a lonely effort. I remember debating and trying to articulate why our entire community, survivor and previvor alike, deserved its place at the table. Back then, I would listen in astonishment as groups that usually championed the underserved dismissed our community as being too small and insignificant to matter.

Sometimes nothing lights passion like being dismissed!

I knew something had to be done to change the language and culture of cancer to include our emerging group of stakeholders. An estimated 750,000 people—about .2% of the entire U.S. population—carry a BRCA mutation. Not a large group compared to our overall population, yet we shoulder about 10-14% of the breast and ovarian cancer burden, and our cancer risk is some of the highest known to science. Our cancers tend to be younger at onset, when people are less likely to be screened. We are at risk for a second and even a third diagnosis. And because we share genetic risk with blood relatives, this predisposition impacts our families. From that perspective, it is clear that ours is a community with disparities and unmet needs; we shoulder a heavy and disproportionate cancer burden. We may not be a majority stakeholder, but make no mistake, our community is an important cancer stakeholder nonetheless.

My commitment to uniting our community began with my own diagnosis 14 years ago. Hearing I had DCIS (early-stage breast cancer) threw me into the cancer community and survivor culture. My only option for initial treatment was surgery. There was no discussion of genetics, hereditary cancer, fertility options, or reconstruction after mastectomy. I had a lot to feel grateful about. I also had serious personal concerns: my son was a toddler; my husband and I wanted another child. Would I ever give birth again? I felt anguish, grief, and fear. I went to a local support group for young women with breast cancer. I will never forget how I felt when a woman who was going through chemotherapy for stage 2 cancer turned to me and said, “You have no idea what pain and suffering is.” I was devastated. I left and never returned. I did eventually work to a place of gratitude and acceptance for my early diagnosis, but it was a lonely journey because I did not know anyone else who was going through something similar, and I was afraid to offend another support group of women who were facing more serious disease. Nine months later when my cancer recurred to my lymph nodes, leading to more aggressive treatment, my fear and anguish returned. When I subsequently learned I had a BRCA2 mutation, I had my ovaries removed, ending my dreams of having another child. That was one of the hardest and humbling years of my life.

After my treatment, I met other women on the Internet who also had BRCA mutations. Some had cancer and belonged to the larger survivor community. But many didn’t, and they were hesitant to get the support they needed. Like other women, these high-risk individuals experienced trepidation and terror when it was time for another mammogram. Most were young women going through so much more than their peers; they were just looking for understanding. Focused on survival, the medical community referred to them as “unaffected carriers”: they carried a mutation (or were at high-risk) but they didn’t have cancer. But the decisions these women faced were difficult and similar to those of women who had a cancer diagnosis:

“Should I have a mastectomy?”

“I need another breast biopsy!”

“Should I remove my ovaries?”

“Should I have reconstruction? What type?” “Where?” “When?”

“Should I have another baby before surgery or face the risk of cancer?”

I watched as these women tentatively reached out for support, sometimes almost embarrassed to ask for help. Although many communities welcomed them, too many times I saw these women’s issues and very valid and frightening experiences dismissed or trivialized. They didn’t have cancer, after all, so why did they need support? I was a survivor by then, but many of the issues I faced were similar to women in this emerging group; they were issues I understood because I had them myself. I knew in my heart that this group needed a safe haven and sense of belonging, a place to share their fears, confusion, and anguish without judgment. Given the lack of understanding and acknowledgement of our cancer burden and the need for resources and support from the public, I also knew this community MUST be united across our differences. Only then could we drive the direction of research to make sure that science looked for better answers for detecting, preventing and treating our cancers.

Less than a year after my treatment ended, I founded FORCE to be that haven of support and resources for anyone at high risk; to give voice to all members. At that time, much of the public messaging about hereditary cancer was dismissive and minimizing—we were considered a small and insignificant group. In the face of this resistance, it was more critical than ever for our community to unite with a common message that our community must receive the recognition and proportionate resources we need and deserve.

Since then our mission has never strayed. We continue to work towards uniting, educating, promoting research, and advocating for the high-risk community. One of our priorities has always been to make all segments of our community feel at home at FORCE. We took a giant step towards our goal 10 years ago in response to one of our board members. She posted “I need a label!” articulating the need for identity for high-risk individuals who have never been diagnosed. We invented our own label—cancer previvor—a hybrid between survivor and predisposition to cancer. And the previvor movement was born.

I know the term is controversial; not everyone likes it. But like it or not, the growing strength and mobilization of the previvor community improves our access to information and care. We now see results of our organized growth. PARP inhibitor research could not have advanced as far without recognition by researchers and pharmaceutical companies that the high-risk population was now an organized community with the power and reach to help recruit clinical trials participants. It is an achievement accomplished only from our community acting together and speaking out in large numbers, survivors and previvors alike. Subscribing to our mailing lists, posting on our boards, attending our conferences, these actions are a show of strength that made the medical community and world beyond take notice. And now, years later, as a result of our work, this year, for the first time, we received national recognition of HBOC and previvors for a week and a day.

We’ve worked long and hard for the gains we’ve made. Along the way we have found champions. In Pretty is What Changes, Jessica Queller, a young previvor, shares what it means to face tough, agonizing decisions. Through In the Family, Joanna Rudnick turned the camera on herself and many FORCE members, and showed the world the poignant life of the HBOC previvor and survivor, and FORCE’s role in organizing us. These previvors demonstrated the high-risk sense of self to the world—facing their challenges head on, refusing to be delegated to the shadows, and eschewing the stigma that society places on people with diseases by normalizing words like “mutation,” “prophylactic surgery” and “genetic testing.”

Heroes have emerged from within our community. Our large and growing network of volunteers: our outreach coordinators, helpline volunteers, and members of FORCE and other groups have tirelessly spread the word, contacted their elected officials to support policy changes, shared their stories, and educated health care providers and the public.

Other champions have emerged from the medical and research community. Where would we be without researchers like Dr. Mary-Claire King, whose persistence and dedication led to the discovery of BRCA 1? Or Dr. Steven Narod, whose vast research has exponentially increased our knowledge of BRCA (his lab provides genetic testing related to research at no cost to participants). Drs. Judy Garber and Rebecca Sutphen are compassionate clinicians and researchers who care deeply about our community and serve on our board of directors to help assure our organization continues our work towards improved care for our community. Our volunteer advisory board members are individual champions who ensure that FORCE information is accurate and up-to-date. Other outspoken proponents have helped us, including genetic counselor Ellen Matloff and the ACLU, who are challenging the BRCA gene patent to tackle the broader issue of access to genetic testing. Over the years we found partners in other organizations, like the Coalition for Genetic Fairness, Genetic Alliance, Hadassah, Network of Strength, the National Society of Genetic Counselors and Komen that rallied for passage of GINA. Other groups, including the Ovarian Cancer National Alliance, the National Ovarian Cancer Coalition, Living Beyond Breast Cancer, and the Young Survival Coalition shared our concerns about survivorship and previvorship, and early on invited us to the table as stakeholders.

Perhaps none have advocated on our behalf so articulately, passionately, persistently, and effectively as Representative Wasserman Schultz who conceived and drafted the EARLY Act that provides resources and awareness for young survivors and previvors. She also introduced and garnered support for H Res 1522. This legislation established National HBOC Week and Previvor Day, and launches a new era of awareness of our community. Perhaps no accomplishment has resonated so strongly and given us more pride. As I watched our elected officials discuss H. Res 1522, I listened as person after person described the toll that cancer had taken on their family. And I felt a new wonderful feeling: being understood and validated. Take pride in what we have done: we have worked long and hard to create a new awareness that will lead to understanding, compassion, and acknowledgement that more effort and funding is needed for things to improve. It’s not a cure, it’s not the early detection for ovarian cancer we have longed for, it’s not that perfect prevention that doesn’t require surgery. It’s not even more money for hereditary cancer research…not yet. But it is a first step.

Along my spectrum of diagnosis I tried to remember that none of us knows where our journey will take us tomorrow. Those who are cancer free may not always be that way. And those of us who have been diagnosed may live years with our disease. Like me, some survivors are the first in two or three generations to be diagnosed. And sadly, many in our community have watched family member after family member face a diagnosis. Ours is a diverse community, and our individual circumstances could divide us…if we allow them to. We must continue on as a united community. As a survivor I recognize that we could not have achieved all that we have without previvor voices and effort. And similarly, although previvors take action to remain cancer free, some will face cancer themselves, or watch loved ones face diagnosis. They will benefit from the research and resources discovered because of survivor involvement in research.

There is a new awareness of our community. It is heartening and reassuring, and it is being bolstered by fresh voices within. FORCE members have published three new books: The Previvors, What We Have, and Positive Results, and FORCE is collaborating with previvor Claudia Gilmore on Previve, a new documentary. Through these works, and future actions, we carry on our battle for research and resources. It took a decade, but no one will ignore, minimize, or dismiss us now. Our movement is too strong and our voices are too loud!

Happy National HBOC Week and Happy Previvor Day!

21 thoughts on “What a difference a decade makes

  1. Sue,
    I send up my thanks and know deep down it is not enough. I cannot see to type much right now because my eyes are tearing up way too much. Looking forward to seeing you at dinner tomorrow night.
    Love and hugs,
    Beth

  2. Pingback: National Previvor Day (first ever!) « either eat this soup or jump out of this window

  3. We all have a purpose in life & Sue, your purpose & your passion for it has given so much to so many. The support, encouragement, knowledge & love has had such a tremendous impact on countless women & men. You are truly one in a million & I’m honored to know you.

  4. What a beautiful message to read as I head off to bed. What a great day and week this is. You are one in a million Sue. No words to express just how much you are appreciated.
    Big Big Hugs,
    Linee

  5. This is a great blog. Thank you Sue for FORCE. I was so happy and lucky to find a place with other people that understand what I’m dealing with. It has been a blessing!

  6. Sue,
    I can’t thank you enough for all that you have done. I know that with FORCE I was never alone in my journey. I also know that through your hard work generations to come will benefit from your commitment.

  7. My thanks goes to Sue and FORCE. I first learned of FORCE when I received my genetic results that I was BRCA 2 positive. 4 years later, I continue to look to FORCE for advice, research and information. Thank you for giving me the knowledge to make the informed decisions needed.

  8. Thank you so much Sue and everyone at FORCE. Being a five year breast cancer survivor, I thank you from the bottom of my heart.

  9. Sue

    How eloquently written !!! My eyes got teary too. I don’t know what I would have done without you and My FORCE sisters. Your organization and it’s members gave me the courage to seek a PBM . I am now hopeful that I will not follow the fate of my mom or sister. I have never been happier in my adult life than I am right now. It is all because of YOU!!

    xoxo
    Debbie

  10. Isn’t my wife wonderful? I’m the luckiest guy in the world even if she does keep scheduling The Force conference on our anniversary. Love you baby!

  11. From facingourrisk on What a difference a decade makes #
    I am the luckiest woman to have as my husband the luckiest guy in the world!

  12. Dear Sue
    I was so moved by your very personal and historical account of the last eleven years! What fabulous accomplishment you and FORCE have made ! As a mother, daughter and health care provider I can say how grateful I am to you for never giving up on your passion.

    Be well,
    Robin

  13. Sue, Thank you. I also wondered, “why do I need a support group, I don’t have cancer” but I felt the need for one. You have provided exactly what I needed to deal with my BRCA 2.

  14. Pingback: My plans for HBOC Week/Previvor Day « Thoughts from FORCE

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