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.

 

Spreading HBOC Advocacy to Japan

Last month I had the honor of giving two talks at a conference organized by the Japanese HBOC Consortium in Tokyo: one for patients and the other for health care providers. Most people in Japan have little input into their health care decisions and do not question their doctors’ recommendations. The conference organizers hoped that my talk might inspire participants to organize an advocacy organization in Japan similar to FORCE to unite toward improving the situation for people with HBOC.

Japanese HBOC Patient Symposium Panel

Panelists from the HBOC Patient-Focused Symposium: (from left to right) Stacy Lewis, YSC; Naomi Sakurai, cancer advocate; Sue Friedman; Chieko Tamura, CGC, genetic counselor; Dr. Shozo Ohsumi, medical oncologist; Dr. Yamauchi, breast surgeon

 

I was joined by friend and colleague, Stacy Lewis, Chief Program Officer at Young Survival Coalition, who was also invited to speak about the important work that YSC is doing for young women with breast cancer. It was an incredible eye-opening experience that helped me appreciate how far we have come in research, clinical care, and resources for the HBOC community in the United States in last 16 years since FORCE was founded.

My talk for the patient community focused on four areas:

  1. Why I became an advocate
    I spoke about my personal health care experiences that led me to take action and start an organization to unite the HBOC community and improve the situation for others: misinformation I received from my health care team, the lack of awareness and support around HBOC, and the absence of research outcomes back in 1999 when I was making my health care decisions. I encouraged the lay audience to learn as much as they could about their health care options and speak out to assure that they are receiving the best care for themselves.
  2. The creation and trajectory of FORCE
    I explained the path from self-advocacy to advocating for others. By publicly sharing my story and seeking other like-minded people, we were able to organize the U.S. HBOC community into a cohesive unit. I shared the growth of FORCE from a small single-staffed nonprofit to a team of 11 employees and over 150 volunteers and the leader in providing programs and resources for the HBOC community. I spoke about the importance of determining touchpoints where we could affect positive change and influence policy, guidelines, and laws to improve the situation for previvors and survivors. I encouraged the audience to explore the ways that they could influence policy and access to care in Japan.
  3. What FORCE is doing in the HBOC world
    I provided highlights on FORCE’s work and programs in 4 key areas: education, support, research, and advocacy.

    • Education is critical for people to make informed decisions. I outlined FORCE’s education programs, including our website, publications, webinars, conference, and our new XRAYS program.
    • FORCE support programs assure that no one faces hereditary cancer alone. Our support programs include our toll-free helpline, our in-person outreach meetings, our message boards, and our new Peer Navigator Program, which will launch this year.
    • HBOC research is the path to better treatment, detection, and prevention options. I discussed the ABOUT Network, the first research registry organized and governed by and for the HBOC community. The audience was interested in the concept of patients setting research priorities and helping to design research studies. I also spoke about how FORCE matches patients to HBOC-specific research through our Research Search Tool and our Featured Research Page.
    • I shared FORCE’s advocacy work, including our efforts to help pass the Genetic Information Nondiscrimination Act (GINA). I described FORCE’s input and testimony regarding national guidelines, gene patenting and direct-to-consumer marketing of genetic testing. I introduced our FRAT program, which trains consumers to weigh in on research and regulatory processes on behalf of our community.
  4. “Take home messages”  
    • One person can make a difference
    • Many people united and working together can make an even bigger difference.
    • It helps to have outspoken champions for the cause. I encouraged the audience to find people in government or the media who had been impacted by hereditary cancer.
    • HBOC research advances and resources developed in one country provide global benefits. There need for HBOC-focused advocates is worldwide; I challenged the audience to look within to see if any of them might carry the advocate torch in Japan.
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I had the opportunity to meet survivors, previvors, and providers who expressed gratitude for the work FORCE is doing.

I encouraged providers who specialize in cancer and genetics to work together with advocates to help them create evidence-based and balanced education materials and programs. I spoke about the importance of educating patients to participate in their health care decisions, and introduced the term “shared decision-making”—an important concept in the US.—meaning that medical decisions are part of a partnership between patients and health care providers. I provided examples from the ABOUT Network, our clinical trials matching and research recruitment efforts, and our FRAT Training program to emphasize why consumers should be invited to participate in and help drive the national HBOC research agenda. At a reception held after the symposium, I had the opportunity to speak one-on-one with Japanese survivors and previvors who expressed gratitude for the work FORCE is doing.

 

Some presentations were translated into English, giving me further understanding of the situation in Japan. The Japanese speakers spoke frequently about how HBOC support and information was better in the United States, and how their goal was to improve the situation in Japan. It was validating to see the term “previvor” used frequently in the presentations – highlighting their interest in incorporating genetic testing and preventive services into the Japanese health care system. I was struck by how much they strive for many things we take for granted. For example, in Japan:

 

  • access to BRCA genetic testing is minimal. Only about 100 patients a year receive genetic testing for which people must pay out-of-pocket.
  • high-risk women have very little access to preventive services such as MRI and prophylactic surgery.
  • no laws protect high-risk people from insurance discrimination, and fear of such discrimination is prevalent.
  • although open clinical trials for PARP inhibitors are recruiting in Japan, the drugs are not approved or available. In contrast, the FDA recently approved Lynparza (olaparib) to treat BRCA-associated ovarian cancer in the U.S.

 

As an advocate, I’m accustomed to pointing out systemic issues needing improvement. I have blogged about these topics in the past, including recommendations to expand the United States Preventive Services Task Force guidelines on genetic testing for cancer to include cancer survivors; men, Lynch and other cancer syndromes, and risk-management options such as MRI and risk-reducing surgery to assure coverage by insurance companies, the negative impact of gene patents, and the need for: more HBOC research, implementation of risk-based screening, and better risk-management options. Uptake of genetic services in the U.S. for people who meet guidelines is still very low, and great disparities in access to care still exist. But listening to the situation faced by our Japanese peers has helped me appreciate the progress we have made in the 16 years since FORCE was founded and has motivated me to do what I can to improve the situation for the global HBOC community.

 

 

FDA Approval of Promising Targeted Therapy Likely Stalled Until More Research Studies are Completed

Wednesday, June 25, 2014 was a pivotal day for our community.

It began with promise and ended with disappointment. For the first time ever, a treatment targeted for BRCA-associated cancers was considered for approval by the FDA. Yesterday the FDA’s Oncologic Drug Advisory Committee (ODAC) held a hearing to consider FDA approval of the drug olaparib for BRCA-positive ovarian cancer.

FORCE has been following the development of these drugs for the last decade.

Since then, we have followed the research, educated people about these agents, generated excitement about the research focus on HBOC, and facilitated clinical trial enrollment. For the HBOC community and the almost 1 million people in the US that FORCE represents, these targeted therapies offered hope. Still, completion of PARP inhibitor studies has taken a long time and in the duration, many people who could not access PARP inhibitors and did not meet criteria for any clinical trial have died of hereditary cancers.

FORCE testified at the hearing on behalf of the HBOC community.

Lisa Schlager VP of Policy at FORCE testifies.

Lisa Schlager VP of Policy at FORCE testifies.

FORCE was there to represent our community at this important hearing, as we have always been in the past. When the community needed protection against genetic discrimination, FORCE successfully lobbied for the passage of GINA laws. When laboratories began aggressive direct-to-consumer marketing of genetic testing, FORCE was there testifying to the Secretary of Health against these practices. We were at the steps of the US Supreme Court fighting for freedom from gene patents, and Wednesday we stood up in front of the ODAC hearing and urged the FDA to approve olaparib to treat hereditary ovarian cancer. You can read our full testimony here.


During the hearing, ODAC voted against olaparib approval in favor of waiting for further research results.

The FDA and ODAC recommended waiting until the completion of further studies before approving the drug, a process which could take several more years. The FDA will issue a final ruling on this application in October, however it is expected that they will not reverse their position on waiting until further studies are completed before approving this drug.

A point of contention is the issue of progression-free survival vs. overall survival.

The concept of progression-free survival (PFS) refers to the period of time that a treatment causes the cancer to improve or remain stable without getting worse. Overall survival (OS) measures the specific length of time that a person with cancer survives after receiving treatment. Scientist use these terms to measure the success or efficacy of new cancer therapies. Traditionally, the FDA has used only overall survival when considering the approval of a new drug. Other outcomes such as improved quality of life, and progression free survival are not usually considered significant enough for the FDA to approve a drug. There has debate among researchers and advocacy groups about whether or not a drug should be approved if it doesn’t demonstrate OS benefits. For patients facing advanced disease, PFS may seem like an acceptable endpoint.

In the olaparib study there was a statistically significant benefit in progression-free survival for BRCA mutation carriers who received olaparib: 6.9 months longer than those on placebo. The time until next treatment was 9.4 months longer in BRCA mutation carriers who took olaparib compared to those who received a placebo. Olaparib showed a significant effect on time to subsequent therapy in BRCA-mutation carriers, with the median time to subsequent therapy of 15.6 months in patients receiving olaparib versus 6.2 months in the placebo group.  There was a trend towards improved overall survival for women who took olaparib, with 55% of patients in the placebo arm dying compared to 50%, with a reported hazard ratio of 0.73 but this did not reach statistical significance in part because of the small number of patients in the study.

FORCE believes olaparib should receive FDA approval now. 

FORCE strongly supports the immediate approval of olaparib as a maintenance drug for BRCA-positive ovarian cancer because we believe it will improve the lives of women fighting ovarian cancer today. We will continue to do everything in our power to urge the FDA to consider the needs of our community.

In the meantime, we will continue to encourage our community to participate in and match patients to the critical research that we hope will lead to FDA approval of PARP inhibitors.

However, given the small subpopulations of women eligible for these trials, and the long timeline for completion of these studies, we are very concerned that completion of larger trials could take too long. Looking at the data on progression-free survival and time to subsequent first therapy, olaparib gives BRCA mutation carriers with ovarian cancer more time without disease and more time where they can avoid chemotherapy, translating to months or years with improved quality of life.

FORCE urged the FDA to consider the unmet needs of the HBOC community. In our testimony we asked the FDA,

“How many more women will die or suffer the effects of advanced disease and chemotherapy while we are waiting for larger trials to be completed? Women fighting hereditary ovarian cancer do not have time to wait.”

Research requires people! FORCE connects people to HBOC research.

With the FDA leaning towards delaying approval until the completion of further studies, now more than ever our efforts to enroll patients into HBOC studies is critical! Please help us create a better future for people affected by hereditary cancers by:

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Challenges to HBOC Research Enrollment: Competing Cancer Treatment Studies

Research is the key to better medical options. In prior blogs, I outlined some of the barriers to completing hereditary cancer research. This is the next blog in our series about addressing the barriers to hereditary cancer research.

Hereditary cancers make up a small subset of a larger disease state. About 7% of all breast cancer cases and about 18% of ovarian cancer cases are caused by a BRCA mutation. Research has shown that cancers caused by BRCA mutations may behave differently and respond to different treatments than cancers that are not caused by a mutation. So HBOC-specific treatment research is critical. After years of advocacy, new studies are looking at agents that may preferentially benefit people with BRCA mutations. Recruiting enough patients to complete these studies is a significant challenge. Open HBOC-specific clinical trials that desperately need participants must compete with more numerous, larger studies that are not limited to people with mutations.

Clinical trials are important for improving cancer treatment, and it’s important that all studies are completed. However, we need to balance the recruitment of BRCA mutation carriers into more general clinical trials so we don’t deplete the potential pool of participants for BRCA-specific studies. To maximize all clinical trial enrollment, it makes sense to better match patients to clinical trials that are specific and most relevant to their situation.

Breast Cancer Subtypes. The challenge of competing studies is apparent in breast cancer treatment research. Breast cancer is categorized into several different subtypes based on features of the tumor. Some clinical trials are open to one or more subtypes of breast cancer.  The main subtypes include:

  • Breast cancers known as “Her2neu positive” make too much of a protein called Her2/neu which promotes cancer cell growth.  These cancers respond to drugs like Herceptin, designed to target the Her2/neu protein. Most BRCA mutation carriers do not develop Her2neu positive breast cancer, so clinical trials focused on Her2neu are less likely to draw from the BRCA positive population.
  • The most common type of breast cancer are “ER/PR positive.” These cancers have receptors that bind the hormones estrogen and progesterone. These cancers tend to respond to hormonal treatments such as tamoxifen and aromatase inhibitors. About 80% of breast cancer patients with BRCA2 mutations will have ER/PR positive tumors.
  • “Triple Negative Breast Cancers” (TNBC) do not express estrogen or progesterone receptors and do not overexpress a protein called “Her2neu.” TNBC are usually treated with chemotherapy, and not with hormonal medications or drugs like Herceptin that target the HER2 protein. TNBC are common in women with BRCA1 mutations. About 85% of breast cancer patients with BRCA1 mutations will have TNBC.

Although people with BRCA mutations can develop breast cancer in any of these subtypes, people with mutations tend to develop specific subtypes of breast cancer. As most cancer is not hereditary, mutation carriers make up a minority of the patients in each of these subtypes.

Breast cancer clinical trials.  A simplified way to illustrate the issue is to view clinical trials like puzzles that need to be completed…

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As potential participants, we make up the puzzle pieces. 

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A majority of breast cancer clinical trials are open to people with any type of breast cancer, but others enroll only people with specific subtypes. Clinicaltrials.gov, a searchable database run by the National Institutes of Health, lists all clinical trials enrolling patients. A recent search of this database identified 262 U.S. treatment clinical trials for any type of advanced breast cancer.

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These trials are open to all breast cancer subtypes, so most women with any type of advanced breast cancer – including mutation carriers – would be eligible.

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ER/PR-positive clinical trials. A search on clinicaltrials.gov showed 38 U.S. studies for advanced breast cancer treatment that are open to women with ER/PR-positive breast cancer.

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Although these studies will draw from the pool of ER/PR-positive patients, mutation carriers are also eligible to participate, since many BRCA2 and some BRCA1 mutation carriers also have ER/PR-positive tumors.

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Triple negative clinical trials. A search of clinicaltrials.gov showed 31 U.S. studies for treatment of advanced breast cancer specifically for women with triple negative breast cancer.

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These TNBC studies draw participants with and without BRCA mutations. Because many BRCA1 and some BRCA2 mutation carriers have TNBC tumors, their participation in these open studies decreases the potential pool of participants for BRCA-specific studies.

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BRCA clinical trials. A search of clinicaltrials.gov shows just 9 U.S. studies for advanced breast cancer treatment that are specific to women with BRCA mutations.

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If these studies cannot complete enrollment due to lack of participants, they are at risk of being closed.

Ovarian cancer. The recruitment/participation situation applies to other clinical trials including ovarian cancer treatment trials. About 18% of ovarian cancers are caused by a BRCA mutation.

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In a recent search on clinicaltrials.gov, of 60 advanced ovarian cancer treatment studies in the United States listed on clinicaltrials.gov, 8 specifically targeted patients with BRCA mutations.

More general advanced ovarian cancer clinical trials will draw from women with and without BRCA mutations.

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This leaves fewer BRCA mutation carrier participants available to complete the studies specifically designed for mutation carriers.

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The prospect of not being able to complete HBOC-specific clinical trials is troubling for the HBOC community, and could be disastrous to the research we need: a mutation carrier with breast or ovarian cancer has a higher likelihood of finding and enrolling in a less-specific clinical trial than one of the few studies open to someone with their specific cancer and mutation type.

In order for progress to be made, and for new drugs to be tested and successful drugs to be approved, all of these clinical trials must be completed. Everyone benefits if we can get the maximum number of studies enrolled without sacrificing participation in smaller, less numerous, or very specific clinical trials for very specific subtypes of cancer. The solution to this challenge requires a concerted effort to match clinical trial cancer patients to the studies that are best suited for them. Because HBOC-specific clinical trials are less numerous, FORCE is developing a comprehensive searchable database of research studies specifically designed to treat, detect, or prevent HBOC cancers. We will be training volunteers to help match members of our community to the clinical trials that are specific to their situation.  We are working to educate the HBOC community about these specific studies, and encourage health care providers who treat members of our community to notify patients about HBOC-specific research at the time of diagnosis, even if the clinical trial is being conducted at a separate or competing facility.

In this way we can continue to move the barometer of research and complete these HBOC-specific studies with a goal of FDA-approved treatments that improve survival and/or quality of life. And having more agents with FDA approval translates to more tools for oncologists to help members of our community prevent and survive hereditary cancer.

 


Health Care Providers Can Help Accelerate Hereditary Cancer Research

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1 in 500 people (0.2% of the population) carries a BRCA mutation, yet we constitute about 10% of people with breast or ovarian cancer. The HBOC community shoulders a disproportionate cancer burden.

Why HBOC research is important
Hereditary cancers constitute a small subset of a larger disease state. About 7% of breast cancers and 18% of ovarian cancers are due to a BRCA mutation. The HBOC community shoulders a disproportionate cancer burden, facing lifetime cancer risks that are higher than any other known population. Our cancers tend to be younger onset and more aggressive, we are at risk for second and third primary cancer diagnoses, and our risk can be passed on to our children and shared with relatives. We are a subset of the larger cancer community, yet our cancers develop differently, more quickly, and may respond differently to treatments than sporadic cancers.

After years of advocacy, HBOC research is getting some well-deserved attention. But to continue this progress, we need to ensure that these studies enroll adequate numbers of patients. A previous blog touched on the complex, multifaceted challenges to HBOC research recruitment and the shared responsibility of all stakeholders to overcome these barriers. This blog focuses on specific barriers to HBOC research and the integral role health care professionals can play in overcoming these barriers to accelerate progress in preventing and treating hereditary cancers. 

Health care providers as partners in research recruitment
Patients trust and rely on their medical teams to provide the best care specific to their individual situations. Research shows that physicians play a key role in educating patients about research studies. Yet, the same studies also show that physicians do not always inform patients about clinical trials elsewhere due to institutional barriers and personal biases. For this reason we are asking health care providers to join FORCE in our campaign to promote awareness and participation in research among the HBOC community.  We ask that oncology health care providers consider the following for all their patients:

  • Refer patients who meet NCCN criteria for genetic evaluation as soon as possible after diagnosis.
  • Discuss the availability of clinical trials with newly diagnosed or newly relapsed patients.
  • Consider which clinical trial, including those outside the health care provider’s facility or practice, that might be the best match for a patient,
  • Inform patients if a particular treatment might impact their eligibility for a clinical trial. 
  • Refer patients to FORCE as a resource and to assist with clinical trial matching.

HBOC specific research studies
HBOC cancers develop due to the presence of a germ-line mutation in one of the BRCA genes. Scientists are researching how to exploit these deficits to better prevent or treat hereditary cancers. For example, PARP inhibitors, first studied in 2005, attack the weaknesses of BRCA-related cancer cells in repairing DNA damage. Despite promising results, delays and roadblocks have delayed the path to FDA approval; more than eight years later, we still have no FDA-approved PARP inhibitors, and people are still dying of hereditary cancers. Research of PARP inhibitors is finally progressing, with more HBOC-specific open studies urgently pursuing patient enrollment.  Failure to completely accrue these studies could derail future HBOC research by creating the perception that the HBOC community is not motivated to participate in research, and that as a cohort, we are too difficult to recruit. Health care providers can play a powerful role in surmounting enrollment obstacles by simply informing their patients about clinical trials.

Challenge: Competing clinical trials and matching patients
HBOC-specific clinical trials compete with each other for participants, and compete with larger, more numerous studies that are not limited to people with mutations. For example, a recent search of clinicaltrials.gov for U.S. treatment trials enrolling people with metastatic, BRCA-associated breast cancer returned 11 studies. A similar search for all metastatic breast cancer studies returned over 200 clinical trials with broader recruitment criteria. Of 60 advanced ovarian cancer treatment studies listed, just eight were specifically for patients with BRCA mutations. The implications are concerning for the HBOC community: a mutation carrier with advanced breast or ovarian cancer has a higher likelihood of finding and enrolling in a less-specific clinical trial than one of the few studies open to someone with their specific cancer and mutation type. 

Solution: Maintain awareness of HBOC clinical trials and refer appropriate patients to studies, even those at other institutions
We encourage all health care providers who work in oncology to stay updated on clinical trials that are recruiting HBOC patients. FORCE provides two helpful tools to do so: our Health Care Provider electronic updates (sign up here and choose the “Updates for Health Care Providers” option), and our online list of HBOC research.  Next month we will be launching an HBOC-specific clinical trials searchable database to better match patients to relevant clinical trials.

If your institution or practice has HBOC-related research that you would like to have included in our database, please send an overview and contact information for the study to Lisa Rezende at lisar@facingourrisk.org.

Challenge: Clinical trials are seen as a “last resort” and certain treatments may impact eligibility for studies
An erroneous perception exists that clinical trials are a “last resort” for treating patients who have progressed after several different therapies. Many patients report that they have been discouraged from participating in a trial because they haven’t exhausted all their treatment options yet. Additionally, in addition to studies for  those with advanced cancer, there are clinical trials enrolling HBOC patients for cancer prevention, earlier-stage disease, and maintenance therapy for patients who have completed treatment.

Further, certain treatments may affect a patient’s eligibility for some clinical trials. For example, newly-diagnosed breast cancer patients who undergo lumpectomy or mastectomy become ineligible for neo-adjuvant chemotherapy studies. Receiving a certain chemotherapy or a certain number of prior treatments may render patients ineligible for some PARP inhibitor studies.

Solution: Discuss clinical trials before beginning treatment
Because patients who do not receive the most up-to-date and comprehensive information about clinical trial options are less likely to make informed decisions about their care, health care providers should consider notifying patients about clinical trial options before starting treatment or resuming treatment after a recurrence. We encourage health care providers to inform hereditary cancer patients sooner rather than later about the existence of HBOC-specific research, even those at separate or competing facilities. Health care providers and patients can find relevant research studies listed on the FORCE website.

Challenge: Underutilized genetic testing
Research has shown that genetic counseling and testing are underutilized services for those who meet national guidelines. Every woman diagnosed with breast cancer at age 50 or younger, and every woman diagnosed with ovarian cancer at any age meets national consensus guidelines for referral for genetic counseling. Despite these national guidelines, a recent study showed that 57% of women diagnosed with breast cancer at age 50 or younger did not receive genetics evaluation.

Solution: Refer all patients who meet national guidelines for genetic counseling and testing

Every breast cancer patient who has a family history or who was diagnosed at or before age 50, and every ovarian cancer patient meets NCCN guidelines for referral for genetic evaluation. Although BRCA test results may affect some breast cancer surgical decisions, impact risk for future cancers, and can inform a patient’s relatives of their risk for cancer, genetic counseling and testing of newly diagnosed breast and ovarian cancer patients often does not receive high priority. Treatment clinical trials that specifically recruit people with BRCA-associated cancers provide one more reason for health care providers to recommend genetic evaluation to newly diagnosed breast and ovarian cancer patients.

Solving the problem of hereditary cancer requires a maintained, concerted effort. We hope our health care provider partners will read, consider, and share this blog with colleagues and follow these steps to accelerating research.

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!

Patient-Centered Outcomes Research Institute (PCORI): Research Done Differently

What is PCORI?

The Patient-Centered Outcomes Research Institute (PCORI) is a new government-supported agency that approaches medical research with a focus on the patient to improve health outcomes. Aiming to answer medical questions that are most important to patients and collecting data from “real world settings,” this differs from traditional research, which typically occurs at large academic medical centers where scientists determine the research questions and priorities to be studied.

PCORI 101 is an easy-to-follow short video that outlines the institute’s research approach and goals.

Why was PCORI formed?

Hundreds of millions of dollars are poured into traditional research each year in the United States—research that is important to advance our knowledge of health and disease—but isn’t always focused on providing patients with the specific information they need to make medical decisions. PCORI was formed to change that. Like all research, PCORI-funded projects must be scientifically rigorous and conducted ethically. But PCORI’s patient-centered approach to resolving medical questions is unique, involving consumer input at every step:

  • formulating research questions
  • setting priorities
  • planning studies
  • collecting information
  • interpreting results
  • sharing findings

PCORI research focuses on answering four common patient questions:

  • Given my personal characteristics, conditions, and preferences, what should I expect will happen to me?
  • What are my options, and related potential benefits and harms?
  • What can I do to improve outcomes that are most important to me?
  • How can my health care providers help me make the best decisions about my health and healthcare?

How Can PCORI Research Help the HBOC Community?

Patient-Centered Outcomes Research (PCOR) is very important for the Hereditary Breast and Ovarian Cancer (HBOC) community. Individuals with BRCA mutations or other risk factors must make many important and difficult medical decisions. In the last two decades research has discovered important information about hereditary cancer risk and outcomes, but our message boards and forums are still filled with lingering questions for which we have no definitive answers, including:

  • What is the ideal age to remove my ovaries/tubes?
  • Is removing my uterus along with my ovaries and tubes beneficial, and if so, how?
  • What medical outcomes might I face after undergoing surgical menopause?
  • Will my health and quality of life be improved or harmed by taking hormone replacement after surgical menopause?
  • Is increased surveillance likely to find a cancer early enough to avoid chemotherapy?
  • Are certain treatments better for people with hereditary cancers? Is it in my best interest to avoid certain treatments?

Answers to questions like these can help people facing HBOC make informed decisions about their health care based on their personal health goals and priorities.

Government agencies such as the United States Preventive Services Task Force (USPSTF) have a strong influence on insurance coverage and patient access to preventive services. The USPSTF reviews traditional research evidence to set screening and prevention guidelines. It also considers Patient-Centered Outcomes Research information that includes people’s attitudes towards preventive medicine such as:

  • Does an increased chance of abnormal findings affect a person’s willingness to undergo more sensitive cancer screening tests such as MRI? Does the risk of increased biopsies outweigh the benefit of detecting cancer earlier and if so, for which patients?
  • Which prevention outcomes are most important to patients?
    • survival
    • avoiding chemotherapy or other debilitating treatment
    • quality of life
  • Are answers to these questions different for high-risk patients than average-risk patients?

Research on the HBOC community’s perspectives on medical services can guide agencies in setting policies that affect access to care.

How is FORCE Involved in Patient-Centered Outcomes Research?

Over the past 15 years, FORCE has organized and united the HBOC community to identify, highlight, and promote research on the health concerns and outcomes that matter to people affected by HBOC. As we have compiled the research that is known about these issues, we have also identified the limits of our knowledge. Through our forums, programs, and surveys we have collected public input on the concerns and information gaps that most impact access to care and medical decision-making. Through our collaborations and participation on task forces and guidelines panels we continue to advance research and promote policies that benefit our community.

Recently FORCE’s collaboration with researchers from the University of South Florida and the Michigan Department of Community Health received a funding award from PCORI that will enable a “patient-powered research network” called the American BRCA Outcomes and Utilization of Testing (ABOUT) Network. Our collaboration is one of 29 networks that were recently approved to participate in a new national resource through PCORI known as the National Patient-Centered Clinical Research Network (PCORnet). We were chosen primarily due to our commitment to gathering patient input and identifying important concerns, our work to unite the community, our dedication to sharing important research results back to the community, and our efforts to train and prepare community members who have no scientific background to provide input into research.

Over the next 18 months we will be engaging our members in the following ways:

  • recruiting members who are interested in completing advocacy training and participating in leadership roles to help us build the governance of the ABOUT Network.
  • soliciting community input to identify and prioritize important unanswered research questions
  • offering opportunities for people to enroll in the ABOUT Network to help accelerate Patient-Centered Outcomes Research
  • training people with no scientific background to participate in research advocacy through our FORCE Research Advocacy Training (FRAT) program. FRAT helps to prepare members of our community to become involved in all levels of research planning and implementation.

FORCE’s participation in the ABOUT Network will allow HBOC stakeholders a place at the table and an unprecedented voice in guiding PCOR research over the coming years. Stay tuned for more details soon.

Preventive Guidelines Discriminate Against Cancer Survivors

FORCE has created a change.org petition to ask the United States Preventive Services Task Force to change their guidelines to include cancer survivors. You can read more about the issue and the petition below.

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The United States Preventive Services Task Force (US

The panel wields considerable power over consumer access to preventive health care services—primary care clinicians and health systems follow its guidelines. And importantly, the guidelines are incorporated into the Patient Protection and Affordable Care Act (PPACA), which states that health plans must provide benefits without imposing cost-sharing (i.e., without a deductible or co-pay) for services that have a rating from the task force of “A” or “B.”PSTF) is a government-supported independent panel of experts that reviews and develops recommendations on select preventive health services. In the panel’s own words: “The USPSTF is committed to improving the health of all Americans. To achieve this, the USPSTF assesses evidence on specific populations and makes specific evidence-based recommendations for specific populations.

The USPSTF has reviewed several, but not all preventive services available to keep us healthy, so some gaps are unavoidable. (Read a list of USPSTF-reviewed services here.)

The panel does have guidelines for risk assessment and BRCA testing, which are now being updated. Revisions have been improved based on feedback and suggestions from many groups and health care professionals; the proposed update supports genetic counseling and testing with a “Grade B” in women who have a family history consistent with a mutation, requiring insurance companies to cover these preventive services without a co-pay or deductible. But as we have previously reported, serious gaps remain, including omission of:

  • men
  • risk assessment and Lynch Syndrome testing
  • letter grade assignment for screening and prevention for high-risk women

We will continue to post about these gaps in policy that affect our community’s access to care. This blog post highlights one particular aspect of the USPSTF draft guidelines on risk assessment and BRCA testing: the discrimination against cancer survivors.

Regarding its draft guidelines, the USPSTF states: “These recommendations apply to women who have not received a diagnosis of breast or ovarian cancer but who have family members with breast or ovarian cancer whose BRCA status is unknown. Women presenting to their primary care providers who have a relative with a known potentially harmful mutation in the BRCA1 or BRCA2 genes should receive genetic counseling and consideration for testing.

FORCE response to the USPSTF draft guidelines

In October of this year FORCE sent a letter to the USPSTF which included four key points about this gap:

  • We pointed out that cancer survivors with a BRCA mutation are at high risk for an unrelated second primary cancer, and could benefit from preventive aspects of BRCA testing.
  • We requested that the task force review the strong research evidence supporting genetic risk assessment for preventive purposes in women who have been already been diagnosed with breast cancer and meet national guidelines.
  • We emphasized how omission of survivors from these guidelines will negatively impact their access to care and coverage for preventive services under the PPACA.
  • We requested that women with a cancer diagnosis be included in the definition of “population under consideration.”

USPSTF response to FORCE

The USPSTF responded to our letter with this statement, “Although the Task Force recognizes the importance of the further evaluation women who have the diagnosis of breast or ovarian cancer, that assessment is part of disease management and is beyond the scope of this recommendation. The Task Force recognizes that genetic counseling and testing may be an important part of disease management for women who have been diagnosed. However, the Task Force’s mission is to determine the evidence-base for preventive services in the general population who have no signs or symptoms of disease.

I recognize that the USPSTF is focused on prevention only, and that any service that may come under the category of treatment is beyond their scope. And it is true that under some circumstances—particularly in women newly diagnosed with breast cancer—BRCA testing can affect treatment decisions, including the decision to have lumpectomy or unilateral mastectomy vs. bilateral mastectomy. However, the USPSTF response is missing a critical point: BRCA testing has preventive value beyond “disease management” and can help survivors prevent a new, completely unrelated second diagnosis of breast cancer. Experts still recommend genetic risk assessment for women whose personal and/or family medical history indicates a possible mutation even after they have completed their treatment for cancer and have no evidence of disease. These women meet the task force’s criteria of having no signs or symptoms of disease.

The USPSTF guidelines discriminate against cancer survivors

The USPSTF’s insistence to exclude survivors from these guidelines, despite research evidence to show the preventive value in testing people after cancer, amounts to discrimination against cancer survivors. The panel implies that once a person is diagnosed with cancer, all further health efforts fall under the category of treatment of the disease. By dismissing the preventive value of BRCA testing in this population they also dismiss the value of preventive services in cancer survivors in general, many of whom will go on to live long healthy lives if they are given access to appropriate preventive services.

My personal history is a perfect illustration. When I was first diagnosed with breast cancer, my health care providers failed to recognize that I had several red flags for a mutation. It wasn’t until after my unilateral mastectomy—when I read an article about BRCA testing—that I recognized I fit the guidelines for BRCA testing. I learned after my treatment that I had a BRCA 2 mutation; I was fortunate because a prophylactic mastectomy of my so-called healthy breast found early-stage cancer. During my BSO, abnormal cells were found in my abdominal wash, indicating that dangerous changes that could develop into cancer if left unaddressed were already underway. These surgeries were preventive in every sense of the word. The fact that I had already been diagnosed with breast cancer did not take away from the preventive benefit of BRCA testing for me. Now 15 years out from my preventive surgeries, I remain healthy and cancer-free. I am confident that the preventive steps I took have kept me from developing a second primary cancer.

Thousands of women like me who have completed treatment for cancer meet expert guidelines for risk assessment and BRCA testing, and also fit the USPSTF’s criteria of having “no signs or symptoms of disease.” Research evidence shows that genetic risk assessment and preventive action can lower their risk for a new primary cancer, detect it early, and lower their mortality. In many cases these women are the key to identifying a family mutation. As U.S. citizens, they are entitled to similar preventive services as people in the general population. Continued exclusion of this population discriminates against breast and ovarian cancer survivors and jeopardizes not just them, but also their healthy relatives.

The guidelines run counter to the spirit of the PPACA

As of January 2014—due to provisions in the PPACA – U.S. citizens with a pre-existing condition can no longer be denied or dropped from their health insurance plans. The stated goals of the PPACA are: “The most prevalent goal, however, and the one concept that is nearly universally accepted is the desire to improve the quality of care across the United States (U.S.) for all citizens until it meets the highest of standards.” It is ironic that at a time when the Patient Protection and Affordable Care Act is being implemented to eliminate pre-existing condition exclusions by insurance companies, the USPSTF task force is in effect adding back pre-existing status, and therefore barriers to cancer survivors’ access to preventive care.

What you can do

After several letters to the USPSTF, we have decided to appeal to the task force once more, focusing on the issues with the most supportive research evidence. We ask that you read and sign on to our counter-response letter, which we plan to submit by December 12. (Read more about the issues here). We ask you to share this letter with any cancer survivors, previvors, health care providers, caregivers, and everyone you know and ask them to sign on to the letter as well. This issue and the USPSTF actions to assure access to preventive services for all citizens effects us all. We will request a written response from the USPSTF and will share it with our community. We will continue to post about the gaps in policy that affect our community’s access to care.

To sign on to the letter, send an email to suefriedman@facingourrisk.org and include your full name, city, and state.

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.