Thoughts on Turning 50: Transformations

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

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

at 26 I was neither fit nor happy

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

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

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

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

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

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

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

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

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

A Healing Light From Within

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

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

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

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

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

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

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

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

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

Beyond Survival

Our hearts flutter but beat strong,

with the will within us to go on.

To not just survive, but to achieve,

to aspire to inspire; to soar, to believe

that we can make a difference.

Shout it emphatically, the sound

of our existence echoes and resounds

ascends and transcends the farthest bluff,

resonates in crevices where ignorance hides

and divides us.

Do not feel devalued, do not cower.

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

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

cancer, like a vacuum,

was sucking out my joy and hope

enfolding and enclosing me in an envelope

of despair and fear. 

In the distance I saw a steady glow,

heard a chorus growing closer

one light separating into many

descending on me,

a flock of angels

carrying torches, lighting the shadows,

voices singing, arms embracing, wings uplifting me.

I became one with this throng,

a thousand women strong.

In the distance a figure huddles

and shudders in a darkened corner,

we press onward swiftly towards her;

a thousand and one angels

comfort and support our newest member.

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

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

13 Developments That Have Helped the HBOC Community

September marks Ovarian Cancer Awareness Month. And September 23-30 we will celebrate National Hereditary Breast and Ovarian Cancer Week! Follow us on twitter, Facebook, and our website to see what we are doing to celebrate and to share your celebration ideas with us!

In honor of this time of year and in keeping with our “13 Things” theme, it seemed appropriate to share my list of 13 developments that have helped our community. Feel free to share your own additions to our list.

1) Discovery of BRCA1 and BRCA2 and advances in gene sequencing
Long before the discovery of the BRCA genes, scientists knew there was a link between breast and ovarian cancer. Geneticist Mary-Claire King first identified the existence of the so-called “breast cancer” genes. Scientists isolated the BRCA1 gene in 1994 and the BRCA2 gene in 1995, leading to the development of a blood test to screen for mutations in these genes. In the past, women with a strong family history of breast and/or ovarian cancer had no way to determine whether or not they had inherited the predisposition to cancer that ran in their family. With genetic counseling and BRCA testing, women can learn more about their risk for breast and ovarian cancers and make more informed health care decisions.Further progress in research and clinical genetics has allowed us to better quantify people’s risk for cancer. BRCA testing has improved and more mutations can be detected in these genes than previously.

Other genes have been identified that can also increase the risk for breast and ovarian cancers, although most increase the risk to a lesser degree than BRCA. Ambry Genetics and University of Washington are examples of laboratories offering genetic panels for people who have breast and ovarian cancers but have no known BRCA mutation in the family. Other tests are in development.

2) FORCE founded as a resource to educate, support, and unite the hereditary cancer community
In 1999, Facing Our Risk of Cancer Empowered (FORCE) was established as a devoted resource for the hereditary cancer community. Our founding principle was that no one should face hereditary cancer alone. Our mission has remained constant: to improve the lives of people and families affected by Hereditary Breast and Ovarian Cancer (HBOC) Syndrome. Our programs provide support, education, awareness, research, and advocacy. In the 14½ years since our inception, FORCE has provided compassionate support and evidence-based information to thousands of hereditary cancer survivors and previvors through our many programs.

3) Genetic Information Nondiscrimination Act (GINA)
Prior to 2008, widespread fear of genetic discrimination kept many people from taking advantage of genetic tests that could make a significant difference in their health care decisions and outcomes. This fear also prevented many people from becoming involved in medical research. The Genetic Information Nondiscrimination Act (GINA) became law in 2008. GINA prohibits health insurance and employment discrimination on the basis of genetic information or a genetic test result. FORCE and researchers from The Ohio State University recently published findings from a survey of consumer knowledge and attitudes about GINA. The study indicated that many people who undergo genetic testing are unaware of GINA.

4) Targeted cancer therapy
Targeted cancer therapies treat disease by interfering with molecules involved in tumor growth and progression (called molecular targets). By focusing on molecular and cellular changes found in cancer cells, targeted cancer therapies may be more effective than other types of treatment and cause fewer side effects. Because these therapies may benefit only a subset of cancer patients, they are usually accompanied by tests to determine whether a person’s cancer cells express the appropriate target.

One of the first molecular targets identified for cancer therapy was the estrogen receptor (ER) expressed in many breast cancer tumors. The FDA has approved several drugs for the treatment of ER-positive breast cancer, including tamoxifen, a selective estrogen receptor modulator, and aromatase inhibitors including anastrazole, letrozole, and exemestane.

PARP inhibitors block an enzyme used by cells to repair damaged DNA. Research is ongoing to determine if PARP inhibitors may work against cancers in people with BRCA mutations, since their tumor cells already have problems repairing DNA. The medications are being tested in clinical trials, and are not yet FDA-approved for use outside of clinical research.Learning more about the molecular defects of specific tumors should help to clarify the role of therapies targeting these defects. More research is needed to determine which targeted therapies work best for which tumors.

5) Oncotype DX, Mammaprint and other treatment decision tests
Not too many years ago, all women diagnosed with invasive breast cancer received the same chemotherapy. Although it effectively treats cancer, chemotherapy has serious side effects, and not all treatments are equally effective for all people. With the development of OncotypeDX, Mammaprint, and similar treatment decision tests, oncologists can use molecular techniques that examine the biology of the tumor, help predict which tumors have the highest likelihood of recurring and which patients would benefit most or least from chemotherapy.  With Oncotype DX, studies have shown that for patients with lymph node-negative, ER-positive breast cancer, a low recurrence score argues against the use of chemotherapy and a high recurrence score argues strongly in favor of the need for chemotherapy. Before these tests were available, doctors knew that not all patients benefit from chemotherapy, but they had difficulty determining which patients needed more aggressive treatment. Using these tests oncologists can help spare women whose chance of recurrence is very low from aggressive chemotherapy.

6) Discovery of fallopian tube origins of many hereditary gynecologic cancers
Gynecologic oncologists had long believed that most ovarian cancers start in the ovarian epithelium, the cells lining the surface of the ovary. However, emerging research suggests that many so-called “ovarian” cancers in BRCA mutation carriers begin in the fimbria (the area closest to the ovary) of the fallopian tubes (the passage that connects the ovaries to the uterus). Since this theory was first proposed, several studies have supported this observation. Recognition of fallopian tubes as the site of many BRCA-associated ovarian cancers has led pathologists to pay more attention to the fallopian tubes removed during prophylactic surgery; catching some “occult” or hidden cancers that would have been otherwise missed. This has also led to the discovery of Tubal Intraepithelial Carcinoma (TIC), precancerous changes in the tubes. Further research is continuing to determine if we can develop better detection and prevention methods, including whether removal of the fallopian tubes might lower the risk for gynecologic cancers in mutation carriers who are not ready to prophylactically remove their ovaries. Removing the fallopian tubes alone is not currently an approved risk-reduction strategy.

7) Serial sectioning of ovaries and fallopian tubes
As more doctors began recommending prophylactic bilateral salpingo- oophorectomy (BSO) to prevent ovarian cancer in high-risk women, pathologists began to discover small, unsuspected, “hidden” cancers had often developed in the ovaries and tubes of women by the time they had surgery. Although tiny, some of these cancers were still aggressive and further surgery or treatment was recommended. If not discovered and therefore left untreated, these cancers could recur later. Researchers at University of California at San Francisco published their findings on a pathology protocol designed to find these hidden cancers by looking at many ultra-thin cross sections of the removed tissue. Previously, pathology procedures called for examination of only a few representative samples. Since this extensive “serial sectioning” became standard-of-care protocol for high-risk women who undergo bilateral salpingo-oophorectomy (BSO), more women are being diagnosed at early stages of fallopian or ovarian cancer, before the disease has spread and while it’s still curable.

8) Laparoscopic and minimally invasive BSO
In the past, removal of the ovaries and tubes was always performed through a large abdominal incision that allowed the surgeon to view the organs being removed. The invention of the laparoscope–a tiny camera on the end of a surgical tool that can be inserted through a small abdominal incision—allowed gynecologic surgeons to achieve a similar outcome with a smaller incision, less pain, and quicker healing. Generally, women who have prophylactic laparoscopic BSO can go home the same day. Abdominal surgery requires several days of hospitalization.

Although on occasion laparoscopic procedures are converted to full abdominal surgeries if there is a complication or excessive bleeding, or if the surgeon needs to see more of the abdominal cavity, for the most part, minimally invasive laparoscopic surgery is standard-of-care for prophylactic BSO. The development of robotic equipment has further improved a surgeon’s visibility of and access to abdominal organs, especially during more complicated surgeries to remove large or invasive tumors.In some cases gynecologic surgeons recommend hysterectomy (removal of the uterus) as well as BSO. This additional surgery can often be performed vaginally through another small incision at the time of the BSO.

9) Screening breast MRI
Women with BRCA mutations have a lifetime breast cancer risk as high as 85%. Their risk begins at a younger age than for sporadic breast cancer, when breast tissue is very dense and harder to image by mammography. In the past decade, researchers began studying whether magnetic resonance imaging (MRI) could be a more sensitive screening tool for breast cancer in high-risk women. Since 2004 several papers have consistently reported that breast MRI screenings of women with BRCA mutations find more early-stage cancers. Earlier detection increases the chance of successful treatment and long-term survival: this has also been shown in these studies. Annual MRI in now standard-of-care for breast cancer screening in women who are high-risk due to a mutation or a strong family history of cancer.

10) Mastectomy advances
Radical mastectomies were performed as standard treatment up until the 1970s. This disfiguring surgery removed all of the breast tissue, lymph nodes under the arm on the affected side, the muscle underneath the breast, and the nipple and areola, leaving only enough skin to close the incision. Lymphedema and long-term pain were common after radical mastectomies. Over the years, this procedure was replaced by less extensive and less invasive surgeries that do not compromise survival. Development of modified radical mastectomies, skin-sparing mastectomies, and nipple-sparing mastectomies has led to fewer complications, fewer long-term side effects, more aesthetic outcomes, and in some cases, retention of some sensation in the breast.

11) Sentinel lymph node biopsy
Sampling underarm lymph nodes of breast cancer patients allows doctors to determine if invasive disease has spread beyond the breast, and affects prognosis and treatment recommendations. Prior to sentinel node biopsies, women who were diagnosed with breast cancer faced axillary dissection—removal of multiple lymph nodes—to stage their cancer. Axillary dissection, however, increases the risk for lymphedema, painful and dangerous swelling of the arm. Sentinel lymph node biopsy (SLNB) allows surgeons to sample only one or a few lymph nodes that are most likely to contain any cancers cells that have spread beyond the breast. If the “sentinel” lymph node or nodes are free of cancer, most patients do not have additional nodes removed. Removal of fewer lymph nodes lowers the risk for lymphedema and improves quality of life in breast cancer survivors. A large study of 5,600 women published in 2010 confirmed the value of SLNB. It showed no difference in disease-free- or overall-survival between women who had negative sentinel nodes and received full axillary dissection compared to those who received sentinel biopsy alone.

12) Reconstruction advances
Reconstruction has evolved over the years, delivering more options for rebuilding natural-looking breasts after mastectomy with less extensive surgery. Doctors can move fat from the belly, thighs, or hips to reconstruct breasts. In the past, these tissue transfers required extensive loss of muscle. With the development of perforator flaps, the same outcomes are achieved while sparing muscles. Fat transfer can augment or rebuild breasts using liposuction and fat injection procedures.New silicone implants are softer and are believed to last longer than older implants. They may also be less likely to rupture, leak, and deflate. A new type of expander being studied allows women to control their own expansion process. Direct-to-implant surgery offers patients the opportunity to forgo expansion, reducing the overall reconstruction timeline with less discomfort.

13) Survival data on prophylactic oophorectomy
Women with BRCA mutations have a lifetime risk for ovarian cancer that is many times higher than women in the general population. Since the discovery of the BRCA genes, many research studies have documented the effectiveness of prophylactic mastectomy and oophorectomy for lowering risk in high-risk women. But until 2010 there was little published research to show that these surgeries improved survival for women with BRCA mutations. In 2010, researchers from the University of Pennsylvania published their research on behalf of a large international collaboration, following over 2000 women with BRCA mutations of whom about half chose to undergo one or more risk-reducing surgeries. The compelling results showed that risk-reducing surgeries significantly reduced cancer diagnoses, and that risk-reducing removal of ovaries lowered cancer-related and overall deaths.

13 Things That Jewish People Should Know About Hereditary Breast and Ovarian Cancer

Before I was diagnosed with breast cancer at age 33, cancer was not on my radar. Despite the fact that my paternal grandmother had died young of so-called “abdominal cancer,” none of my health care providers indicated that I might be at high risk for cancer. My health care team treated my diagnosis of young-onset breast cancer like a lightning bolt out of the sky. It wasn’t until after my initial treatment (a unilateral mastectomy) that I read a magazine article and learned of several significant red flags for an inherited BRCA mutation. After reading the article I became concerned that my cancer might be hereditary. The article talked about the link between young-onset breast cancer (like mine!) and ovarian cancer (which my grandmother likely had) and BRCA mutations. It also mentioned the relevance of a family’s health history on the paternal side (in my case the only cancer in my family was on my father’s side). No doctor had ever expressed interest in the cancer on my father’s side of the family. Perhaps the detail that was most surprising to me was the high prevalence of BRCA mutations in people of Easter European Jewish descent. All of the factors mentioned in the article which raised the suspicion of a mutation applied to my situation. Had I known this information before my mastectomy, I would have pursued genetic counseling and testing and made different surgical decisions at the time of my diagnosis.

Even now, 16 years after my diagnosis, as I give presentations on hereditary cancer, I still frequently meet Jewish people who have no idea of the high prevalence of BRCA mutations in this community. Most Jewish people are aware of the dangers of Tay-Sachs disease, another genetic disorder which is also prevalent in Jewish populations. Yet there are still many people who are Jewish and have a family history of cancer who have never heard of BRCA mutations and are unaware of the availability of genetic counseling and testing. Learning about BRCA   almost a year after my initial diagnosis of breast cancer was eye-opening. I learned the importance of people doing their own researching and advocating when it comes to health care decisions.

In keeping with our “13 Things” theme during 2012, I present my list of what Jewish people should know about hereditary breast and ovarian cancer, with the hope that this list will be spread far and wide beyond the FORCE community in order to save lives.

1. BRCA mutations have been found in people of every ethnicity. But people of Eastern European Jewish ancestry have the highest known incidence of BRCA mutations, and hereditary breast and ovarian cancer.
2. About 1 in 40 people of Jewish decent have a BRCA mutation, about 10-fold higher than other populations.
3. Women with a BRCA mutation have up to an 85% lifetime risk for breast cancer and a 50% lifetime risk for ovarian cancer.
4. About 40% of Jewish women with ovarian/fallopian tube cancer and 20% who have premenopausal breast cancer have a BRCA mutation.
5. BRCA mutations are associated with increased risk for several types of cancer, including breast (both male and female), ovarian, fallopian tube, primary peritoneal, pancreatic, melanoma, and prostate .
6. Each child of an affected parent has a 50% chance of inheriting a BRCA mutation.
7. BRCA mutations can be passed down equally from fathers or mothers to sons or daughters.
8. Beginning at age 40, men with BRCA mutations should discuss with their doctor the benefits, limitations and risks of prostate screening. Preliminary research suggests that prostate cancer in men with a BRCA mutation may be more aggressive than prostate cancer in men who do not have a BRCA mutation. Men with BRCA mutations are at risk for melanoma, male breast and pancreatic cancer as well.
9. People who test positive for a BRCA mutation have options to lower their risk for cancer or detect it at an earlier, more treatable stage.
10. The majority of BRCA mutations in Jewish people occur in one of three genetic sites. Genetic testing usually begins with a Multisite 3 panel that looks for these common mutations and is less expensive than full BRCA testing.
11. In couples where both individuals have a BRCA2 mutation, it is possible for children to inherit a rare and deadly disease known as Fanconi Anemia, which is more common in people of Jewish descent. Couples concerned about this possibility should consult with a genetics expert.
12. Genetic testing for BRCA is performed from a blood sample or cheek swab.  The test itself is simple, but it is not always straightforward. Consulting with a genetic counselor is the best way to assure the correct test is ordered, results are properly interpreted and an appropriate course of action is discussed.
13. The majority of people who have a BRCA mutation or a family history of cancer are unaware of their increased risk for hereditary cancer.  Awareness is critical to saving lives.

Visit our website for more information about genetic counseling and testing. Visit our FORCE in the Jewish Community page to watch our video and learn about ways you can help raise awareness about BRCA in Jewish people.

13 Reasons to Attend the Joining FORCEs Against Hereditary Cancer Conference

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Overall Health: Addressing the Big Picture

For those with an inherited predisposition, cancer remains a serious and pervasive threat. But as scientists learn more about hereditary cancer, we have greater opportunities to apply research to live longer and better.  As a community we must continue to press for more research to understand the long-term health consequences of hereditary cancer and risk-management choices. And as individuals, we need to advocate for our own care to assure that we take every possible action to stay as healthy as possible.

As scientists begin to study the impact of surgery on overall health; the role of BRCA genes in maintaining heart health; the effects of menopause on bone health, memory, and quality-of-life; and other issues, they are revealing new health concerns that require long-term monitoring.

So many people post on our message boards, call our helpline, and email us with questions about their overall health. What follow-up should I have? Which doctors should oversee my care? If I have prophylactic surgery, am I trading one health risk for several new risks? These are valid questions.

In 2010 the large, multi-institutional PROSE study reported conclusive data that prophylactic surgery lowers the risk for cancer and prophylactic salpingo-oophorectomy lowers the risk for mortality in women with mutations. We published a summary of this research in our newsletter. This was important, long-awaited data that validated a lifesaving intervention.

But this advance in knowledge is tempered in part by research that suggests that early menopause can lead to increased risk for heart disease. Preliminary studies on laboratory animals propose that the BRCA genes may play a role in repairing heart damage. As more women seek prophylactic surgery at younger ages, risk for heart disease later in life becomes more relevant.  But little is known about the magnitude and timing of this risk, or the best way to monitor or potentially offset this risk. Will exercise, medications, or hormones help, and by how much?  Should we schedule regular visits to the cardiologist? Is the risk for cardiac disease even higher for those of us who have undergone chemotherapy with agents that are known to damage heart tissue? The answers to these important questions will only be elucidated through more population-specific research.

Similar concerns have been raised about bone health and memory. Just how important are hormones in maintaining our memory? Researchers have just recently begun to address the impact of chemotherapy on memory–so-called “chemo brain.” Are the effects of hereditary cancer treatment plus early menopause on memory cumulative? Are interventions like hormones, exercise, practicing problem-solving, helpful? Likewise, early menopause and medications used to treat some breast cancers are implicated in accelerating bone loss. How can we best protect ourselves from osteoporosis and fractures?

So many members of our community receive health care piecemeal. We see genetics experts to assess our cancer risk, a breast surgeon or oncologist for breast health, a gynecologic-oncologist for our ovarian cancer risk. But after our yearly screenings or surgery, what then? We are still at higher risk than the general population for other cancers and possibly for other diseases. Who follows us? Can we find a primary care provider who has expertise in hereditary cancer and associated health issues? Some of our members report that they are released from their surgeon’s care after surgery and sent on their way with no long-term evaluations scheduled. I have spoken with women who are post-menopausal in their 30s who have never had a bone-density test and have never received guidance on when or how their bone health should be assessed. Are we missing opportunities for further disease prevention with this myopic approach to health? Coordinated care is a secondary but critical emerging topic. We cannot let these essential survivorship and previvorship issues go unaddressed or become so eclipsed by cancer risk that they are totally ignored.

FORCE will be watching closely—but not from the sidelines—as research on these topics unfolds. We will be addressing these subjects at our Joining FORCEs conference, with experts who will present on the link between BRCA and heart health, bone health, menopause management, hormones, screening after surgery, and other topics associated with long-term health. We will continue to press for studies to look at long-range health within our community, broadcast updates to our members, and promote resources that help our members address the big picture in their care. Until there are more definitive answers and established guidelines, we must each be proactive and responsible for our health care.

Stay tuned.

Why Shouldn’t We Have It All?

As a 15-year breast cancer survivor, I remind myself daily of my good fortune and blessings.

Of course, I feel fortunate to be a long-term survivor, especially when I consider that my cancer initially recurred nine months after treatment. I made it through chemotherapy and radiation without any serious problems, despite needing a transfusion and drugs to stimulate my bone marrow when my blood counts were low. I emerged on the other side of treatment and have remained cancer free. I am also thankful that I was given the opportunity to lower my risk for further cancer through genetic counseling, testing, and interventions.

Now, at age 48, I am in the best physical and mental shape of my life. I feel great. I am healthy, fit, and I have a libido. But I didn’t always feel that way. And I recognize that not everyone who has navigated the hereditary cancer journey is as fortunate as I am. Although my cancer experience demanded sacrifice, my experience had such a better ending than my grandmother’s. Diagnosed with ovarian cancer in the 1940s, her cancer was a death sentence. Her doctors operated, found that her cancer had spread, and then sent her home without any further treatment.

Since my diagnosis and treatment, I have watched as improvements in cancer research and clinical care have evolved to improve the overall cancer experience:

• new tests to determine the best treatments and targeted therapies that may work preferentially for hereditary cancer
• less drastic life-altering treatments and better medications to fight nausea and boost the immune system during chemotherapy
• less invasive surgery, including skin-sparing and nipple-sparing mastectomy, minimally invasive robotic surgery, and sentinel node biopsies, to name a few
• more choices for breast reconstruction
• new and better options for preserving fertility in previvors and survivors

These changes are steps in the right direction, but our options are still far from ideal and we have a long way to go. Each and every day, our community faces tough decisions and harsh treatments, issues that deserve solutions. Researchers are now starting to look at secondary issues down the road for our community, such as:

• the long-term impacts of menopause, chemotherapy, and later-onset heart disease when someone has a BRCA mutation
• the risks of osteoporosis and arthritis from medication or early menopause
• the impact of treatment or menopause on memory and dementia

As more healthy women now get tested and make these decisions at a younger age, the medical community needs to focus on long-term previvor- and survivorship issues. I have fielded thousands of helpline calls, posts on FORCE, and personal emails from women who face so many challenges that need to be addressed; women who are terrified of cancer and terrified of surgery, living day-to-day in fear. Those who have lost their confidence, libido, fertility, or their sexuality as a result of surgeries.  They are facing real challenges and yet they feel they may not be deserving of support.

As a breast cancer patient I felt that I was supposed to be grateful to be alive and not worry about the nuances of quality-of-life issues. I was expected to accept the sacrifices and losses without question.

• I was told that I would need to give up my dream of having another pregnancy.
• I was told I shouldn’t get the reconstruction that I wanted because my long-term prognosis was questionable.
• I was told that the fatigue, joint pain, and bone density loss I experienced after treatment was inevitable.
• I was told that my lost libido was not associated with lack of hormones.
• I was told that my weight gain was due to depression.
• I was asked to compromise my quality of life in exchange for survival.

My first diagnosis was early-stage breast cancer and surgery was initially my only treatment. At that time my prognosis was excellent. But I was 33 with cancer and needed support. I went to a support group and was told by another survivor who was going through chemotherapy that I didn’t know what pain and suffering was. She felt that I had not suffered enough to belong to the group and I therefore didn’t need support. I left and never returned. Imagine being told you don’t deserve the support you need! Later, when my cancer returned in my lymph nodes, I wondered “have I suffered enough now?” My experience sensitized me to both the survivor and previvor communities and the support needed by anyone who faces hereditary cancer. FORCE was founded on this principle, that “nobody should face hereditary cancer alone.”

I struggled with serious consequences for the three years immediately following my treatment. I dealt with severe fatigue, joint pain, and a complete lack of libido. My doctors wouldn’t listen and minimized my concerns. They seemed to imply that I should feel grateful, despite being debilitated at age 35. Rather than working with me to develop solutions, they dismissed me. I had to shout, self-advocate, research, fire doctors and search for new doctors until I found providers who would work with me. Eventually I found a solution that worked for me.

Like me, many women are being told that they don’t have a right to complain because they aren’t currently battling cancer or because they had the opportunity to take preemptive steps. Yet these women have had losses that affect their lives and for which they grieve.

I want to say emphatically that it is wonderful to be grateful to be alive but it shouldn’t be a requirement placed on us by others.  It is okay to want it all.

We have a right to expect the best quality-of-life and better options for ourselves and for our children. Facing intensive screenings, call-backs for more screening, biopsies, surgery, early menopause (and the associated risks), agonizing decisions, sacrificing our fertility, and the concern that our children may have inherited our genetic predisposition—all of these experiences are valid challenges. And nobody has suffered too little to deserve support!

I am happy to report that I now have my health (and libido) back and I’m living a great life. Not everyone is so fortunate. If we fade into the shadows and don’t speak out, we won’t get the research or resources we need. It is okay to cry, vent, scream, grieve, and share our situation, our options and our outcomes, and then collectively demand better. Whether you are a previvor or a survivor the issues faced by the hereditary cancer community come with long-term consequences and our concerns are valid. We must stop apologizing for wanting it all and unite to advocate for more research and better options for ourselves and our community.

Thirteen Ways FORCE will Serve Our Community in 2012

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

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

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

A Prescription for Health: Taking Time for Exercise

At age 48, more than a decade after being treated for cancer and enduring chemotherapy and early menopause, I’m amazed to find myself in the best shape in my life. So many of us go to exhaustive lengths to explore and pursue options for cancer risk-management—we make multiple doctor appointments, undergo intense screening, and sometimes have surgery. But throughout our lives, many of us, myself included, often neglect fitness, a critical way to improve our health and longevity.

In high school, I felt invulnerable. I took my health for granted and never took fitness seriously. During college, my bad habits got worse: I stayed up all night, smoked and ate chocolate in excess. When a dear friend came home from a lifestyle program at Hilton Head Health Institute looking and feeling phenomenal, I vowed to do the same as soon as my time and wallet allowed. But the rigors of graduate school got in the way. It wasn’t until I completed veterinary school and my internship that I finally had time to focus on weight loss. I was no longer smoking, but I was carrying about 60 additional pounds on my 5’ 2” frame. I was also sedentary and in the worst shape of my life. If I didn’t make a change, I knew my health would decline.

Before beginning my new career, I took two weeks off to “get serious” about my health at Hilton Head Health. For the first time, I made exercise and a healthy diet a priority, and I gained control of my health and well-being. The 5 most impactful things I learned and assimilated were:

1. Pick a realistic goal. I hated to hear that because I didn’t want something realistic! I wanted to lose 60 pounds, and I wanted to do it right away. Intellectually, I knew that was unrealistic given the time I had for exercise. I remember wanting to cry. I would not going home at my ideal weight, or any weight that was even close. Over the years I have learned the wisdom of these words. I am finally at my ideal weight, but it has taken a lot of effort, determination, focus and time.
2. Find an exercise you love and exercise most days of the week. In the past it was rollerblading. But in the last four years I have developed a passion for tennis.
3. Who’s in charge? This addressed my inner voice, the one that made excuses and justified why I needed or deserved a cookie (or two or three) or large quantities of peanut butter.
4. Practice the “one-minute rule.” Sometimes just doing one minute of an exercise can help you overcome fatigue and get you moving. Before you know it, one minute can turn into two, or thirty, or even an hour of activity. If not, you are still no worse off than you were sitting on the couch.
5. The biggest benefits come from small changes.

I lost 4 lbs at the Institute and then went home and lost another 20. I was on my way and thought my newfound body would be permanent. I did great, until I got pregnant. Suddenly I was too tired to exercise, the baby in my body was in control of my eating (so I told myself), and my doctor gave me permission to gain weight. Hard to believe that the child inside of me was only 5 lb. 13 oz. at birth. Where did that additional 44-lbs come from? I had trouble losing the weight. During the summer after my son’s first birthday, I made a pledge to myself to get back in shape. By following the program that had worked for me before, I once again gained control: my body was fit, and I was happy with how I looked and felt.

And then, at 33, I was diagnosed “out of the blue” with breast cancer, and subsequently learned that I carried a BRCA2 gene mutation. In addition to breast cancer treatments, I underwent a bilateral ophorectomy and hysterectomy and premature menopause at age 35. Between cancer treatments and menopause, I regained quite a bit of weight and soon (it seemed), I was back to my heaviest.

Like many cancer survivors and previvors, between surgical scars and weight gain, I struggled with body image issues that further undermined my self esteem and confidence. For the first time in my life, I also battled clinical depression. The medications that saved me also sapped my energy and made me less inclined to work-out. I knew I needed help and was fortunate to be able to return to Hilton Head Health to renew what I had already learned, and once again see results. As an advocate for survivors and previvors, I meet many women who believe that achieving weight loss after treatment, early menopause, or surgery is impossible. I’m here to say it’s not.

Although I pay attention to my health and fitness all year long, I now devote one week each year to renew my commitment to fitness. It is a gift I give myself and one that is well worth it. It reinforces what I already know and gives me the incentive to maintain my weight and conditioning for another year. Each year I find that my commitment is stronger and my fitness level is a little better than it was the prior year. This is even more important as new research is linking body mass to cancer risk and recurrence.

As a patient advocate I’m passionate about motivating others to do whatever they can to live healthier and longer. An important part of my message is that it’s never too late to start getting fit. But I also hope to inspire our younger members to become and stay more active. Research shows that high-risk women who exercise in their teens tend to have a later onset of breast cancer than those high-risk women who stay inactive at a young age. FORCE offers information about fitness and lifestyle at our conferences, in our newsletters, and in a new section of our website on lifestyle, fitness and cancer. We have partnered with Dr. Kathryn Schmitz, the lead investigator in the WISER Sister Study to determine whether steady exercise can significantly lower breast cancer risk in high-risk women. Whenever possible, I share my own personal experience and struggles with weight. I have been both unfit and fit long enough to know how seductive and insidious inertia can be and how rewarding and exhilarating an active lifestyle can be. A hopeless spirit can lead to a sedentary body. But it is possible to change.

Research shows that people who add even a little activity to their sedentary lifestyle achieve some of the largest health gains. Sometimes we need help, but not everyone has access to lifestyle change programs like Hilton Head Health. There are many other resources for people who want to become more fit. TV shows like A&E’s Heavy offer practical tips and feature motivational stories about people who took charge of their health and became active. Programs like Weight Watchers offer affordable tools for monitoring caloric intake, and provide support from others with similar weight challenges. For sedentary previvors and women at high-risk for breast cancer and who have not had mastectomy, the WISER Sister Study offers involvement in research, access to a personal trainer, and at the end of the study, a free treadmill! Other options include joining a gym or online fitness community or finding an exercise partner. Try adding just a bit more exercise each day. Keep a daily record of everything you eat. Blog about your experience. Like most things that are worthwhile, fitness is a journey of small steps. Positive change requires more than education, it requires commitment.

Who knows, you may become the motivation for others to follow in your footsteps.