Guest Blog: Join FORCEs at our 2015 HBOC Conference!

by guest blogger, Jane E. Herman

May Goren PhotographyWhen I boarded the flight for my first trip to Orlando in June 2011, my goal was not to hug Mickey Mouse or visit Cinderella’s Castle. Rather, my destination was the sixth annual Joining FORCEs Conference. Not knowing anyone who would be in attendance, I was – not unexpectedly – equal parts nervous and excited.

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Me and my mom.

During the course of the previous year, I’d lost my mom to breast cancer, tested positive for a BRCA2 gene mutation, and had a laparoscopic hysterectomy. Four weeks after the conference, I was scheduled for a prophylactic bilateral mastectomy and immediate reconstruction using my own abdominal tissue, which would be micro-surgically reconnected to create new breasts.

The only known mutation carrier in my family at the time, I had met a few BRCA sisters at meetings of New York City’s FORCE group, but I was hungry for more – more medical information, more quality-of-life tidbits, and, perhaps most of all, more (and deeper) connections with others who “get it.” I couldn’t wait to talk to people about my experiences – and learn about theirs – without having to start the conversation by explaining what a BRCA mutation is and how drastically it increased my lifetime risk of breast and ovarian cancer.

From the minute I climbed aboard the shuttle, I got exactly what I needed. Before we’d even left the airport, several fellow riders and I had already connected, sharing details of our BRCA and HBOC journeys for much of the trip to the hotel.

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I came alone to my first conference but soon bonded with kindred spirits.

The next two and a half days flew by in a kaleidoscope of attending large and small group sessions, networking, taking notes, sharing stories, swapping email addresses, strolling through the exhibit area (and making a purchase or two!), attending the ever-popular “show and tell” (for women only, of course), asking questions, and chatting one-on-one with doctors, genetics professionals, and many of the hundreds of BRCA sisters (and a few brothers) who joined me at the conference.

There were a few tears as well, especially when I talked with mother/daughter pairs traveling the BRCA road side-by-side. How I envied their togetherness, and, oh, how I longed for my own mother and for her to know about this thing that we shared. For every tear, however, there were a hundred hugs – and I don’t mean “air hugs.” I mean real, honest to goodness (if you’ll pardon the expression) boob-crushing hugs.

When I returned to Orlando in October 2012 for the seventh annual Joining FORCEs Conference, the hugs began as soon as I entered the hotel lobby.

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Dave Bushman provides helpful genealogy tips.

 

Words cannot begin to express my joy at seeing in person the friends with whom I’d been emailing, texting, and Facebooking for the last year. As in 2011, the days flew by in a whirlwind that was both the same and different from the previous gathering. Presentations by researchers and clinicians brought us up-to-date on the latest developments in a field that moves at lightning speed, while the exhibit hall, once again, offered fun jewelry, pretty scarves, useful products, and connections to an array of organizations whose work benefits members of the HBOC community. Perhaps most significant for me was that with my own mastectomy in the rearview mirror, I was able to “pay it forward” as a “show-er” during “show and tell,” proud of what I’d done and more than willing to share my experience – the good and the not-so-good – with those who were standing where I’d been just one year earlier.

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FORCE volunteers bonding at 2014 conference

By June 2014, when the eighth annual Joining FORCEs Conference was held in Philadelphia (in partnership with the Basser Research Center for BRCA), I’d been an Outreach Coordinator for New York City FORCE for 18 months. My co-facilitator Laura and I not only drove together to Philadelphia, but also organized a group dinner at a local restaurant on Friday night so attendees from our NYC group could spend time together. In addition to all the things I’d come to know and love at the FORCE conferences – the large and small group sessions, the exhibit hall, the networking, the sharing, and, most especially, the hugs – this time around, my days also included early morning Outreach Coordinator meetings and several sessions designed specifically for participants in FORCE’s Research Advocate Training (FRAT) program.

Conference logo with tagline jpegNeedless to say, I’m eagerly awaiting this spring’s ninth annual Joining FORCEs Conference in Philadelphia for so many reasons. Registration is open now, and I hope to see you there!


Jane E. Herman
, an Outreach Coordinator in New York City, is the executive writer and editor at the Union for Reform Judaism. She maintains a slice-of-life blog, JanetheWriter.com, where, among other things, she writes often about her experiences as a BRCA2 mutation carrier.

 

Education, Medical Decisions, and Regret

A recent AARP article that contained an interview with rock stars Sheryl Crow and Melissa Etheridge brought awareness to the individual and personal nature of genetic testing, hereditary breast and ovarian cancer (HBOC), and the medical challenges that accompany inherited breast cancer. The article also led to some heated responses from members of the HBOC community. 

 

The HBOC community has had its share of celebrities. Whenever public figures disclose that they carry a BRCA mutation or have hereditary cancer in the family, it raises the profile and awareness of hereditary cancer. Christina Applegate, Sharon Osbourne, and, most prominently, Angelina Jolie, have all revealed their mutation status. Others, like René Syler, Cynthia Nixon, and Wanda Sykes have shared their family histories, and although they have not tested positive for BRCA, some other familial factor may be causing breast cancer in their families.

It’s difficult enough making medical decisions around HBOC, but celebrities have an added burden of being in the public eye. People look up to them. As individuals in the spotlight share their journeys and decisions, the public assumes they have access to top information and the best doctors. More weight is given to celebrities’ opinions and medical choices than those of the average person, and we often take for granted that celebrities’ statements are accurate.

The AARP interview quoted Ms. Etheridge as saying, “I have the BRCA2 gene but I don’t encourage women to get tested.” Although she doesn’t use the word “regret” it certainly sounds as though she has misgivings about testing. Melissa Etheridge is a member of the HBOC community, and by extension a member of FORCE’s constituency. FORCE empowers people to make informed medical decisions. We validate their feelings, and support people on the HBOC journey. I support Ms. Etheridge’s decisions, but I am saddened to think she has regrets about her choices.

Ms. Etheridge said in the AARP article that her doctor recommended testing, but she never mentions receiving genetic counseling from a qualified expert. I do think this could have changed her perception of genetic testing and highlights the value of receiving comprehensive information on which to base your medical decisions. Information can be the antidote to regret.

In the interview, Ms. Etheridge also says, “Genes can be turned on and off. I turned my gene on with my very poor diet.” FORCE wrote a letter that was co-signed by members of our scientific advisory board and sent to the editor of AARP regarding Ms. Etheridge’s statement. USA Today subsequently published an article about our letter to AARP which included interviews with members of FORCE and the HBOC community who expressed views that differed with Ms. Etheridge. Many members of our community consider the information received from genetic counseling and testing as lifesaving. In FORCE’s letter, we expressed concern that readers may think that BRCA mutations and their effects on cancer risk can be modulated solely with diet to prevent cancer, and conversely that those with mutations who become diagnosed with cancer somehow caused it with a poor diet. Although several studies have shown that eating a healthy diet can lower the risk for certain cancers, these studies have been large-scale general population studies, and the actual protection for a given individual may be small. There are many reasons to eat a varied and healthy diet, including protection from numerous diseases. But not enough evidence suggests that diet and lifestyle alone can protect people from BRCA-associated cancers.

Screen Shot 2014-12-15 at 12.04.41 PMI do want to point out that our letter was directed to the editors at AARP and not Ms. Etheridge, who is entitled to her opinion on testing. Our issue is the lack of context and evidence-based information that surrounded her statements about cancer risk, diet, and genetic testing that could have educated AARP’s readership, and helped readers to make their own informed decisions about whether or not to undergo genetic testing.

I believe that access to a genetics expert and support via FORCE empowers people to make the medical decisions that are right for them. Ms. Etheridge’s example shows that we can do a much better job of educating and supporting people facing hereditary cancer; it highlights the critical need for FORCE to continue our efforts to help people feel empowered and live the healthiest and most fulfilled lives possible.

When HBOC is in the news, it opens a discussion, demystifies inherited cancer, and removes the stigma associated with words like cancer, mutation, and mastectomy. Medically inaccurate information about cancer, genetics, and HBOC, however, is abundant in the media and harmful to consumers. This is why FORCE is launching our XRAYS (eXamining the Relevance of 

???Articles for Young Survivors) program, which is supported by a grant from the Centers for Disease Control. The funding comes from passage of the EARLY Act, legislation that was first introduced to Congress by Representative Wasserman Schultz, who also carries a BRCA mutation, and is up for congressional renewal. The EARLY Act funds programs by organizations that focus on young women and breast cancer. FORCE’s XRAYS Program will allow us to critically review articles in the media, correct any inaccuracies, and write a lay level summaries of the research or information presented. The reviews will be accompanied by an “at-a-glance” graphic representation for readers to easily determine if they should read and believe the article and what relevance it may hold for their situation.

Regardless of her personal feelings about testing, I hope that in time, Ms. Etheridge is able to recognize that many people (not all) feel that having genetic information about cancer risk can improve their health outcomes, and that she appreciates the value of a more balanced public position on BRCA testing.

 

FORCE 15: Reasons to Join FORCEs and Attend Our 8th Annual Conference

Need a reason to attend this year’s Joining FORCEs Conference? Here are 15 good ones:

  1. It’s the largest annual gathering by and for the hereditary cancer community.  Be a part of this landmark event.
  2. We make the latest science understandable and accessible. Hear experts clearly explain the science of hereditary cancer and make the latest research and medical options understandable and accessible no matter where you are in the HBOC journey.conference1
  3. We cover every aspect of HBOC. View our agenda to see a complete list of the 48 separate lectures, workshops and networking sessions.
  4. Sessions are organized to help you find the information you most need.  Our conference content is aligned into tracks that focus on different groups.  View a list of suggested sessions based on your specific situation.
  5. We bring researchers to you.  You’ll hear the latest scientific findings presented first-hand by world-class experts, and have the unprecedented opportunity to speak one-on-one with researchers about your own pressing issues.dr_levine_round_table_small
  6. 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. Build relationships that will last a lifetime.
  7. See and hear about women’s real post-mastectomy surgical results.  If you’re considering your surgical options, visit our Show & Tell room to chat with women who have already undergone mastectomy. Every type of reconstruction and mastectomy without reconstruction is showcased.  Meet and speak with plastic surgeons who perform these surgeries, and Kathy Steligo, author of The Breast Reconstruction Guidebook. Participate in our photo shoot to help other women make decisions about surgery.
  8. Gain information and support to help make important health care decisions.  Learn the latest information, guidelines, and emerging science to help you overcome one of the biggest challenges of living with HBOC: sorting through medical options so that you can make health care decisions that are right for you. From risk-management to fertility options, from emerging tools for cancer detection to long-term survivorship issues, from hormone replacement to enrolling in a clinical trial, our conference sessions will help you make decisions with the most up-to-date information.
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  9. Enroll in research.  Make a difference.  Learn about and enroll in studies that will offer better answers for ourselves and future generations.
  10. Give back to the community by volunteering. Learn about FORCE volunteer opportunities and meet our volunteer team.
  11. Meet our Spirit of Empowerment Award winners. Every year we honor people who contribute to the HBOC community and support the work of FORCE. This year we honor annual_awards_compassionawardcancer survivor Annie Parker, whose personal struggle with hereditary cancer is the basis for the Hollywood film, Decoding Annie Parker; Kara DioGuardi, GRAMMY-nominated songwriter, previvor and former American Idol judge; Stacey Sager, Channel 7 Eyewitness News reporter and two-time cancer survivor; the sister team of Sisco Berluti Jewelry, and others.
  12. Bond with family members. Sharing the conference with family members is a unique bonding experience that will help your loved ones to better understand your choices, and empower them to make their own informed health care decisions.

  13. Enjoy the new venue
    . Located in the heart of Philadelphia, our conference site  offers many amenities and is within walking distance to downtown dining, shop
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    ping and attractions, including Independence Hall and the Liberty Bell.  The clbcbellhonference offers great food, relaxation, opportunities to decompress, express yourself and play.
  14. Get fit, reclaim your health and well-being. Learn how you can make choices for a happier, healthier life. Sessions about exercise, nutrition, and integrative medicine provide information on living a healthy lifestyle. Improve your flexibility with yoga or try a heart-pumping Zumba workout. Attend the sexuality session or one of our “GirlsNight In” parties and reclaim your mojo.
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  15. Celebrate FORCE’s 15th Anniversary.  Help us blow out the candles and share birthday cake as we celebrate 15 years of fighting on behalf of the HBOC community.

A limited number of scholarships are available for those who would most benefit from attending but require financial support in order to participate. Visit our scholarship page to donate or apply.

See you in Philadelphia!

Hereditary Cancer Impact Is More Than Skin Deep

Articles about Angelina Jolie’s revelation that she underwent genetic testing and prophylactic mastectomy with reconstruction often emphasize her as one of the world’s most beautiful women, who is still beautiful after all that she has endured. This message can be reassuring; by going public, Ms. Jolie put a more positive spin on the stigmatizing effect of having a “mutation” and undergoing mastectomy. Single-handedly, she started a public dialog about hereditary breast and ovarian cancer (HBOC) that has raised awareness beyond any that has been previously achieved by media focus. Her story provides hope for those who are just beginning to understand or confront their hereditary cancer risk. These are positive developments.

Media reports on HBOC that focus only on cosmetic outcomes, however, can be a double-edged sword, demonstrating that women can come through mastectomy and remain beautiful, but sometimes setting up unrealistic expectations. Some of these articles trivialize the challenges we face, as though cosmetic outcome is the only factor that matters. While other stories sensationalize the decision for prophylactic surgery as an extreme and shocking step. The complexity of HBOC and the accompanying emotional impact is often unreported.

Media attention notwithstanding, those of us who live with HBOC know that learning about hereditary cancer risk and making medical care decisions to stay healthy are not always easy or straightforward, and outcomes are not always positive. Aided by support, credible information, and skilled caregivers, many of us survive, but not all of us emerge totally unscathed.

Survivors and previvors of hereditary cancer are sometimes pressured to feel grateful for the knowledge of their risk. Most of us do appreciate knowing about our elevated cancer risks, and subsequent opportunities to address these risks. But we have also faced loss and grief due to hereditary cancer. We have known fear, life-changing treatments, side effects, and loss of loved ones who are dear to us. In the 16 years since I learned of my own mutation and then experienced treatment, follow-ups, and surgery, I have been there myself. After undergoing mastectomy, chemotherapy, radiation, and surgical menopause in my thirties, I found very little focus, support, or guidance on issues such as sexuality and body image 16 years ago.

I am one of the lucky ones. After years of research, self-advocacy, trial and error, therapy and passage of time; at age 50 I am in the best physical and emotional shape of my life. But I know that so many others with HBOC struggle with the quality-of-life issues. Even after our best efforts, some of us face extended recoveries, long-term consequences, complications, side effects, or outcomes that are not always what we hoped for. For some women, surgery affects their sexual experience. Others don’t feel comfortable with how they look in or out of clothes. Menopause may have reduced or eliminated their desire for intimacy, or changed their ability to achieve sexual satisfaction. These women often do not regret their surgeries, but they are left with emotional scars as well as physical reminders from the procedures.

Whether we struggle with decision- making, are unhappy with our outcomes, or feel satisfied but are trying to adjust to a “new normal,” all of us have a right to process our experiences and grieve our losses. Acceptance and gratitude are not always immediate or easy to attain. Sometimes we have to work at it. Sometimes we need the guidance of experts. And sometimes we just need the support and understanding of those who have been there before us.

In our 2012 survey (unpublished) on long-term follow-up care and medical issues for survivors and previvors, 77% of 900 respondents indicated that they were “somewhat concerned” or “very concerned” about libido and sexuality, and 55% indicated that they had ongoing problems with libido or sexuality. Even when distinguishing responses from survivors and previvors, although more survivors (62%) experienced problems with sexuality and libido, a high percentage of previvors (48%) did as well. These numbers are unacceptable and speak to an unmet need among our community.

Fortunately, organizations like Livestrong are focusing on long-term issues of survivorship. Earlier this year, the National Comprehensive Cancer Network (NCCN), which establishes consensus guidelines for standard-of-care practice in cancer medicine, released its first guidelines on survivorship issues, including sexuality. But clearly, gaps remain in resources and health care services addressing these concerns, for both survivors and previvors.

FORCE programs are also designed to provide this support and guidance. For those who have difficulties accepting their bodies and changes in sexuality from treatment, mastectomy, reconstruction, or surgical menopause, our upcoming free webinar on body image and sexuality may help. Sharon Bober, PhD, Director of the Sexual Health Program in Department of Psychosocial Oncology and Palliative Care at the Dana-Farber Cancer Institute, will explain how women can manage the after-effects of these mind- and body-altering interventions.

Until more attention is given to the complex nature of HBOC and the long-term consequences of our choices, public perception of the HBOC experience will be limited to what is presented by the media. Sexuality and intimacy is a personal and private topic, making it challenging to discuss with health care providers. But if we don’t bring the subject up, most doctors won’t ask us about it. We must continue to advocate for ourselves in order to improve our long-term physical and emotional wellbeing. The health care community needs to pay attention to these concerns and invest in more resources and research on sexuality and intimacy for survivors and previvors as important quality-of-life outcomes. Every woman facing HBOC, regardless of her situation and choices, has a right to feel desirable, emotionally fulfilled, and beautiful inside and out.

Fear, Bravery and HBOC

Screen Shot 2014-01-05 at 8.30.20 PMRecently the topics of BRCA and bravery have been in the news. Previvor Angelina Jolie made headlines when she announced that she carries a BRCA1 mutation and underwent prophylactic bilateral mastectomies. Singer Melissa Etheridge, a BRCA2 mutation carrier and a breast cancer survivor, labeled Jolie’s choice of BPM as “fearful” rather than “brave.” Personally, I don’t think that bravery and fear are mutually exclusive.

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Fear is a powerful motivator. It is an adaptive and natural reaction to threats to our lives and well-being that can lead us to make choices that improve our survival or quality-of-life. Fear of cancer may not be the only fear on which we base decisions. Fear comes in many varieties: fear of chemotherapy or radiation, fear of life-altering or image-altering surgeries, fear of leaving our children parentless, fear of passing on a mutation, fear of medical debt, fear of a recurrence, etc.  Each of these fears are valid and may impact our personal health care decisions. Fear does not make our actions any less brave and it doesn’t mean these decisions are rash or uninformed. Fear can be balanced with information, empowerment, action, and even competing fears.

Bravery evokes images of heroic people sacrificing their lives for others, but there are other examples of bravery. Like so many women in our community, Angelina Jolie cites concern for her children as a reason for being proactive with her medical care. Putting the needs of others above our own requires courage. Several members have expressed that they didn’t feel particularly brave in facing their cancer risk. Although I can relate to their feelings, I would argue that the HBOC community includes some of the bravest role models I have ever met.

Most of my life I have never felt that brave, and bravery was never a description that I ever used to define myself. I was bullied in school, and I didn’t stand up for myself. Instead I shrank from confrontation.

When I was first diagnosed with breast cancer, and later when it recurred at age 34, I was terrified. I thought the rest of my life would be short, and given my prognosis I was afraid my 2-year-old son would grow up without a mom, like I did. So I did what I felt was necessary to improve my chances of survival: I left my busy veterinary practice to move to Houston for treatment at MD Anderson, one of the top cancer centers. My husband called me brave as he dropped me off for my appointment for a second opinion. I may have appeared resolute, but inside I was trembling. He confessed later when he picked me up that he would have fainted from terror walking through the imposing doors of the cancer center.

While on sabbatical for treatment, many of my clients called or wrote to wish me well. They sent their prayers and good wishes, and many told me they thought I was brave. I didn’t feel I had earned any badges for valor. I was simply doing what my doctors recommended. From the time of my recurrence until I finished treatment, on any given day it was a struggle between getting up and facing the day or hiding under the covers paralyzed with fear. I didn’t feel brave, but hearing the word from others was like a shot of courage, a mantra that sustained me.

As members of the HBOC community, we face many difficult challenges and decisions. Courage comes in many forms. Whether it’s proceeding with genetic counseling and testing, telling relatives about the mutation in the family, going to a high-risk clinic for an MRI, facing cancer treatment, entering a clinical trial for an investigational drug, waiting for test results, receiving that first chemotherapy, undergoing the last fill, or sharing with the world in a very public manner about personal medical choices in order to raise awareness; every circumstance we face requires grit and determination. Even the recommendations for which we feel we have no reasonable alternative still require us to move forward, schedule the appointment, and show up. Why shouldn’t we accept the positive labels? We might not feel we have earned them, but maybe we can gain strength from them.

Life is hard enough. And for people with inherited cancer risk, it is even more so. It is already difficult to face the criticism and lack of understanding from uninformed people. It is even harder when criticism comes from public figures and receives wide media attention. Uniting our community through FORCE demonstrates how much lighter our burden can be when we share and support one another.

We shouldn’t be ashamed of our feelings. Bravery is not the absence of fear. Acknowledging our fears and adding them into the medical equation is a reasonable approach to decision making. You don’t have to feel brave to be brave. Sometimes courage means just putting one foot in front of the other to meet your destiny. Your example of fortitude may be the inspiration others need to continue their own journey in a positive direction.

Thoughts on Turning 50: Recovery

The first time I met with my running coach, she had me run a quarter mile as fast as I could. As I neared the finish, I remember feeling like I was drowning. As soon as I finished she had me slow to a jog without stopping and timed me as I continued this very easy pace until I caught my breath, recovered, and was able to run again. She calculated my pace and how long it took me to recover and explained how this was different for everyone. This was an important lesson for me. Part of my marathon training involves pushing the envelope with speed and effort for as long as I can, followed by several minutes of recovery. Similarly, there is another aspect to recovery. As I push myself to improve my stamina and strength, on some days I’m too sore or exhausted to train. I have learned that taking a break for a day to allow my body and my muscles to recover is essential.

The training experience reminded me that recovery is a necessary part of every effort.

Emotionally, recovery works best if you budget time for it beforehand. So many of us push ourselves to re-enter life after treatment or surgery. We often compare our progress with that of others, even though each of our situations is unique. We often aren’t patient enough with our bodies to grant ourselves time to recover before we try to go back to work, assume normal responsibilities, or exercise. Countless times I have heard people in our community say, “I was healing well from surgery but today I did 2 hours of yard work (or Zumba, work, fill-in-the-blank), and today I have swelling (or pain, fatigue, fill-in-the-blank).”

The concept of recovery is not new to me.

When cancer recurred to my lymph nodes after my mastectomy, I traveled to an out-of-state cancer center for care. I left my veterinary practice and life-in-progress to do what I thought would be best for my family and me. I underwent chemotherapy, radiation, genetic testing, abdominal BSO/hysterectomy, and prophylactic mastectomy.

During my treatment I was away from home and received many cards and letters from well-wisher friends, colleagues, and clients (and even a few from their pets). One card from a friend became my favorite: on the outside was an illustration of an idyllic country path, and inside it read: “The road will remain as you stop to remove the stone from your shoe.” I tried to keep this as my mantra throughout my treatment and recovery but it wasn’t always easy. Anxious about mounting medical bills after my 9-month leave of absence, I returned to my veterinary practice soon after returning home to Florida; my first day back on the job was only 9 short weeks after completing treatment and my abdominal surgeries. Even though I had a light load at the animal hospital, I remember sliding to the floor in an exhausted heap during lunch and saying, “I can’t do this.” I felt defeated. Yet by a month later, I was able to handle the work load. I could have saved myself emotional and physical frustration and pain if I had taken into account all that I had just gone through physically and emotionally and just given myself the time I needed to recover adequately.

So many times I see posts on our message boards or meet people at support group meetings with questions about recovery time. Most women want to know when they will get back to normal. Many people base their decisions regarding prevention and treatment on these questions, understandably trying to minimize recovery time by even a couple of weeks or days. In the big scheme of things, I have found that allowing for more recovery time up front can prevent an extended absence that becomes required to deal with a complication arising from doing too much, too soon.

Even 15 years later, I sometimes need a literal reminder of the important lesson from my friend’s card. Between my overwhelming work schedule, other obligations, my family, and the rainy season, marathon training doesn’t always take high priority. On the days when I am able to train, I don’t like to cut my training short or miss even one single training mile.  The path I run is paved with river rocks, and once in a while I do get a stone in my shoe. On a particularly busy day when I was running after three days without training, the sky was overcast and threatened rain. I had pressured myself to run 9 miles for this workout. At the 8-mile mark, I felt a pebble in my shoe. I resisted stopping, because once I do, I always have a hard time restarting. It was a small pebble, I reasoned, and although I felt it, it didn’t hurt, and I was so close to finishing; I ran the remaining mile with the stone in my shoe.

No surprise that the resulting blister left me out of commission for three more days.

It’s not always easy to be patient or kind to ourselves, but no matter what the situation— surgery, illness, treatment, complication, grieving the loss of a loved one, or even training for a marathon—we need to give ourselves sufficient permission and time to recover both physically and emotionally to continue our journey and arrive at each milestone and tackle each challenge in our best possible shape.

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.

Gene Discovery, Patents, and the Community

Recently a dear friend sent me a link to an article in the February 1996 issue of Nature Medicine. The article by journalist Adam Marcus covered a media event and panel of women’s rights advocates expressing concern about Myriad’s impending patenting of the BRCA1 gene. Panelists declared unregulated genetic testing to be the coming century’s foremost threat to individual liberty. Incredibly, 17 years after the publication of Adam Marcus’ article, the debate is still ongoing—the issue of gene patenting and the consequences of lacking regulation regarding gene patents are still present and as relevant as they were then.

Admittedly, I missed this article the first time around. In 1996, I was more likely to be reading the Journal of the American Veterinary Medical Association than a human medical journal. With a toddler, a budding veterinary career, and no significant family history of breast cancer, my focus was not on hereditary cancer. In fact, genetic testing and gene patents were furthest from my mind. But my diagnosis with breast cancer eight months later and subsequent revelation that I have a BRCA2 mutation changed that.

When I was first tested for a BRCA mutation in 1998, I was fortunate; my testing costs were covered by my health insurance. I was very grateful to have access to the test; my gratitude extended to the laboratory that made the test available to me. Although I was initially tested without genetic counseling, I went to MD Anderson Cancer Center for a second opinion and eventually found my way to a genetics expert and had access to up-to-date and credible information from experts. It wasn’t until I became immersed in my work with FORCE that I became aware of deeper issues that were the consequence of Myriad holding patents on the BRCA genes.

In 2009, Joanna Rudnick released her documentary In the Family, which shined a spotlight on Myriad’s gene patents and some of these consequences. The documentary included an eye-opening interview with Dr. Mark Skolnick, founder of Myriad Genetics. Joanna questions how a gene—a product of nature—can be patented, saying “It’s like patenting your thumb.” Skolnick compares Myriad’s patents on the BRCA genes to patents for ipods, telephones, and computers, and cavalierly asserts “there’s no controversial patent. It’s all very easy to understand if you take the time.”

In the film, Joanna brilliantly follows the Myriad interview with an interview of Dr. Mary-Claire King, who was credited with identifying the location of the BRCA gene when she was a researcher at University of California at Berkeley. Dr. King has dedicated herself to the research that proved the existence of hereditary breast cancer gene mutations. Her research laid groundwork that sent many laboratories racing to be the first to isolate and clone the gene for genetic testing.

In Rudnick’s film, Dr. Skolnick says, “I think the single greatest inventive thing I did was to create Myriad. We did it to win the race…and we won.” Asked point-blank why the cost of the test is increasing, Dr. Skolnick replies, “that’s a good question, and I think there’s a point at which we have to start looking at decreasing the cost of the test.” Yet, four years after the documentary was released, the cost of testing has gone up—BRCA testing is more expensive, even though the technology for sequencing DNA has become less expensive.

The gist of Dr. King’s interview starkly contrasts with Dr. Skolnick’s statements. Dr. King speaks about genes for which she holds patents, saying, “The critical thing about the patents we hold is that none of them are exclusively licensed. So they are completely open for anyone to use for research purposes and any company that wishes to license them can license them for a trivial amount of money.” King mentions that her last royalty check amounted to $2.73. In contrast, the February 6 edition of the Salt Lake Tribune reports Myriad’s earnings: “Myriad projects full-year 2013 revenue will fall between $575 million and $585 million. That would be a 16 percent to 18 percent increase over fiscal 2012.” The contrast is apparent and appalling.

Over the years, FORCE has appealed to government agencies and spoken to the health care community and the public regarding Myriad’s exclusive patent, and explained how the corporation’s marketing strategies and policies have increased the burden on the hereditary cancer community that we serve. In 2008 and again in 2009 we testified to the Secretary’s Advisory Committee on Genetics Health and Society, expressing our concerns with direct-to-consumer marketing of genetic tests, and specifically Myriad’s marketing practices, which we feel encourages BRCA testing without first receiving genetic counseling from qualified experts trained in cancer genetics. In our opinion, their aggressive marketing strategies have been harmful to members of our community.

In 2009, the American Civil Liberties Union filed a lawsuit challenging Myriad’s patents on the BRCA genes. On April 15, 2013 the U.S. Supreme Court will hear oral arguments on gene patenting. This hearing will represent the culmination of four years of the legal tug-of-war between Myriad Genetics and the plaintiffs, which included the ACLU and a long list of individual, advocacy, and health care professional groups. FORCE agrees with the ACLU that exclusive gene patents negatively affect access to care and research and we have filed an Amicus (Friend of the Court) brief on behalf of plaintiffs. You can read our testimony to the United States Patent and Trademark Office on the topic of how exclusive gene patenting impacts research and access to care. The Supreme Court oral arguments will be open to public participation.

For those who wish to learn more about Dr. King’s work, Decoding Annie Parker is a new  movie that follows the parallel lives of Dr. King and Annie Parker, a Canadian woman whose family was impacted by hereditary cancer. Based on a true story, the film raises the profile of Dr. King’s contribution to the discovery of hereditary breast and ovarian cancer syndrome and the BRCA1 gene mutation. It is sure to resonate with many in our community. FORCE is a proud charity partner of the movie, which stars Helen Hunt as Dr. King. A special screening will be held April 2 in New York City. FORCE will hold  screenings of the film in other cities. Stay tuned for updates.

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.

The Cavalry Has Arrived!

When I founded FORCE in 1999 it was in the early days of BRCA discovery and testing. I had my own BRCA testing in 1998, over a year after my diagnosis with breast cancer, and only after learning about hereditary cancer by reading a magazine article about BRCA. I immediately understood the significance and power of identifying people with genetic predisposition to cancer, with the goal of preventing cancer or detecting it early. But the technology was met with suspicion and alarm by many individuals and groups, even in the face of emerging research that documented the value of identifying those with a BRCA mutation.

I spent a good portion of FORCE’s early years explaining why our community was important. Back then the hereditary cancer community was frequently dismissed or minimized, emphasizing the fact that we were a small subset of a larger whole. Granted, we don’t represent a majority of the cancer community, but we shoulder a disproportionate cancer burden. And because of our extraordinary high risk for cancer and the generational aspects of inherited cancers, HBOC individuals and families are an overburdened and under-resourced community. We require unique research and resources that provide information and evidence-based solutions for the extraordinary issues we face.

We worked hard in those formative years to raise awareness, unite our community, and assure that both survivors and previvors were acknowledged as cancer stakeholders who had a say and a place at the table. We fought for awareness, educated people on the differences between hereditary and sporadic cancer, advocated for better early detection and risk-reduction options, and helped people make informed decisions. Along the way, we were often asked to justify the prophylactic options for risk-management, and even the need for a hereditary cancer advocacy group like FORCE.

As awareness has grown, FORCE has grown, and so has our voice in the cancer community. And yet there are still many areas of unmet needs when it comes to hereditary cancer clinical care and research. Although improvements have been made, current options for prevention, detection, and treatment of hereditary cancer are still inadequate. Too many people are being diagnosed with and succumbing to hereditary cancers, and the path to drug development and FDA approval for example for PARP inhibitors has been glacially slow. After14 years of passionate advocacy and incremental and modest gains, it would be easy to be discouraged. But as many of you know if you read my blogs, I also like to focus on achievements and advancements, and there have been many.

Once in a while, I have had the privilege to witness a landmark event, a game-changer for our community. Last Monday night was such an event. I was honored to be among over 200 people who attended the opening of the new Basser Research Center for BRCA within the Abramson Cancer Center of the University of Pennsylvania. Established through a transformative philanthropic gift from Mindy and Jon Gray, the center is dedicated to the memory of Mindy’s sister, Faith Basser, who succumbed to hereditary ovarian cancer. The center is devoted solely to research and provision of care relevant to BRCA1 and BRCA2. Not a dry eye could be seen as we watched a video that included Faith’s story and how she became the motivation for her family’s endowment. The video also included stories of members of our community, who shared the devastating toll of hereditary cancer on their families. That night, all of us who attended and watched the video, listened to the speakers, and met the Basser Research team understood the center’s clear, overarching message: HOPE. I was witnessing history being made and a new era for the HBOC community.

I was honored to be among over 200 people who attended the opening of the new Basser Research Center for BRCA

Certainly our community will continue to face challenges, hardship, disparity, and unmet needs. But we have champions and a path to a brighter and more optimistic future with the establishment of the first research center dedicated to the pursuit of better detection, prevention, treatment, survivorship, and supportive care for HBOC. As I told Jon and Mindy Gray when I thanked them for this amazing gift to our community, “the cavalry has arrived.”