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.

Creating More Resources for High-Risk Women Undergoing Breast Cancer Screening

Women at high risk for breast cancer are not receiving the information, access to care, or support they need to address their elevated cancer risk. Despite guidelines on risk assessment and management, many women are not accurately informed about their high-risk status or the risk-management options required to make informed health care decisions. Some high-risk women report that uninformed health care providers or insurance companies deny them access to standard-of-care screening services. Other women express frustration in getting the peer support and encouragement they need as they undergo increased breast surveillance.

FORCE is committed to addressing these issues. We have started by creating a survey for women undergoing breast surveillance to document and measure the extent of the information and resource gaps.  We have already identified some of the gaps in care and support for these women including:

• Inadequate breast cancer risk assessment
  Guidelines for breast cancer screening are based on certain risk factors, and not all breast cancer risk is created equal. Unfortunately, many women who want to know their risk for breast cancer do not receive credible, up-to-date information about their risk and standard-of-care risk-management recommendations. This is in part a result of more people receiving genetic testing without full genetic counseling from genetics experts. (Visit our finding health care section of the FORCE website to locate a genetics expert.) Providers who are not trained in cancer genetics may run a BRCA test but fail to recognize other hereditary syndromes and cancer risk factors that might be causing cancer in a family. This can lead to some women with a family history of cancer incorrectly believing their risk for breast cancer is not elevated. Accurately identifying women at high risk for breast cancer is essential because these women benefit from increased breast screening and other risk-management options. FORCE will continue to encourage women concerned about their breast cancer risk to seek out qualified health care experts with advanced training in cancer genetics and risk assessment.
• Incorrect information about high-risk screening and risk-management options
  National expert (NCCN) guidelines recommend annual MRI, mammogram, and clinical breast exam beginning at age 25 (or younger in some cases) for women at very high risk for breast cancer, including women with BRCA mutations or other inherited gene mutations. These guidelines are updated annually. The American Cancer Society also recommends annual breast MRI and mammogram for women with an intermediate risk for breast cancer of 20% lifetime risk or higher. For some high-risk women, additional recommendations include discussion of medications or surgery to lower risk. Despite this, almost daily we hear from high-risk women who have not been advised of all their risk-management options. It is critical for us to assure that women who are at high risk for breast cancer receive credible information about standard-of-care guidelines for breast cancer screening and options for lowering their breast cancer risk.
• Inadequate insurance coverage for breast screening
  Most, but not all insurance companies cover increased breast screening for women who are at high risk for breast cancer. Still, screening can be expensive, and the out-of-pocket expense from copays and deductibles can be high. Many high risk women are uninsured or underinsured. Although there are some resources that provide financial assistance for mammograms and MRI, not all high-risk women have equal access to these financial services. FORCE’s has compiled resources that provide financial assistance for breast screening on our website page on Insurance, Financial Assistance, Cost of Services. We will continue to add more resources and advocate for programs to assist all high-risk women gaining access to these services.
• Inadequate emotional support for high-risk women undergoing breast screening and awareness of non-surgical risk-management options
  FORCE receives feedback from women undergoing high-risk surveillance who report feeling anxious, isolated, or dismissed. Some express frustration that media coverage on high-risk women focuses mainly on prophylactic surgery, ignoring other risk-management options and leaving gaps in public awareness of these options. (You can read my recent blog on this topic). Many express a desire to connect with other high-risk women undergoing surveillance.

We invite high-risk women who have not undergone bilateral mastectomy to take our survey and join our mailing list. Over the next several months, FORCE will continue to address these issues by developing publications and other educational materials on standard-of-care guidelines for breast screening. We encourage our community to share these publications with mammography centers, health care providers, and family members in order to educate them about the need for increased breast surveillance in high-risk women. We will post articles and communications for our community to read and share so that we can raise awareness about high-risk screening.  Our website section on research lists screening and prevention studies. We will highlight research opportunities looking at new screening modalities and medications or lifestyle interventions aimed at lowering breast cancer risk. And we will build a support network, one volunteer at a time, of women undergoing breast screening who are interested in supporting others like themselves. Together, we can address these issue for this important segment of our community.

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.

A Public Response to Dr. Ivan Oransky

To put this post in context, I was forwarded the link to this webcast from the recent TedMed Conference. I suggest watching this presentation by Dr. Ivan Oransky prior to reading the following blog.

Dear Dr. Oransky,

I recently watched your TedMed presentation and I share your concerns about medical overtreatment of certain conditions and the importance of weighing risk and harm when considering medical interventions. I agree with your point that not all medical tests and interventions have clinical value. I also agree that all stakeholders should share the responsibility for appropriately applying medical technology based on evidence and outcomes. However, I disagree with some of your statements, and I feel compelled to correct what I believe is a misunderstanding on your part about the term “previvor,” and the intent of the advocacy group FORCE in coining and using the term.

In my opinion, your assertion that advocacy groups use “previvor” to make more people feel they are at risk and raise more funds is incorrect. I founded FORCE in 1999, not to make money, but to ensure that people have access to credible information about hereditary cancer, that hereditary cancer research continues to provide better options, and that no one must face it alone. FORCE does not inflate people’s risk. We refer people to genetics experts based on professional consensus guidelines published by the National Comprehensive Cancer Network (NCCN).

Further, previvor is a term developed for a group of people who carry a mutation that confers a high cancer risk in their lifetime. FORCE is a national non-profit organization with a mission to serve individuals and families with a BRCA gene mutation or hereditary cancer. We coined the term to refer to individuals who are genetically predisposed to cancer but have not been diagnosed. The term was a response to a plea by one of our members who lost her mother to cancer at a young age. Learning that she had inherited a BRCA1 mutation and potentially faced the same fate, she sacrificed her own breasts, ovaries, and fertility to reduce her very high risk. Yet she felt dismissed and marginalized by people who did not understand her situation.  She articulated what many in our community felt: they needed and wanted a way to collectively organize, support each other, and advocate for resources to address their unmet needs.

My own breast cancer was diagnosed at age 33 and recurred the year following my initial treatment. I endured chemotherapy, radiation, and an increased likelihood of an early death from cancer. My son was only two years old at the time. I was forced to take a leave of absence from my work during treatment and went into medical debt to pay hospital and treatment costs. Had I known of my inherited predisposition at the time I would have taken steps to avoid cancer or detect it earlier. My experience is just one illustration of the financial, emotional, and physical costs of not knowing about a genetic predisposition to disease. These burdens impact entire families and can affect long-term quality of life. Many women pay with their lives.

Too many hereditary cancer families have watched their loved ones battle and too often lose their lives to the disease. They want to know what they can do to avoid the same fate for themselves and their own children. They face lifetime risks for cancer as high as 90%. Their risk-management options—preemptive surgery, risk-reducing medications, and heightened surveillance—are not without side effects or other risks. complex information about risk and risk-management and using it to make informed decisions. Although risk-management options are not ideal, most genetics professionals concur that hereditary cancer risk assessment and associated interventions have clinical utility. Research from peer-reviewed journals demonstrates that risk-management options can lower cancer-associated and overall mortality in the highest-risk cohort.

As an organization whose mission includes education, FORCE understands the challenges of presenting complex information in a balanced, understandable, compelling, and humane fashion. We take this responsibility seriously and we frequently consult with our expert advisory board for guidance. It is my opinion that your representation of previvors and our advocacy for the community was neither balanced nor accurate. Your baseball analogy illustrated your point about overtreatment of pre-conditions, but you neglected to mention inherited cancer risk, the situation for which the term was established. You cited “pre-acne” as an example of the absurdity of treating a precondition, even though the consequences of a diagnosis of acne and a diagnosis of cancer are not remotely the same. Women with BRCA mutations have elevated lifetime risk of developing breast and ovarian cancer that is many times higher than the general population. They are more likely to develop aggressive cancers and at a younger age when they are less likely to be screened. Thousands of women die from these cancers annually. Given these facts, the example of pre-acne is not a realistic comparison to inherited cancer risk and in my opinion insults a group of people with a very serious set of medical concerns.

Members of our community have an inherited mutation that leads to changes on a cellular level, which put them at very high risk for disease. Although our genetic differences may not be obvious on the surface they cause challenges that separate us from other people who do not possess these mutations. Ignorance and ridicule directed at people with medical challenges of any type are inappropriate.

I hope that you will provide a clarification of your statements about the meaning of the word previvor to include the fact that it was coined to describe and empower a specific group of people at very high risk for a deadly disease like cancer. Further, I encourage you to use your role as an experienced medical journalist and professor to delve more deeply into the difficult issues of people with BRCA mutations. In doing so you have the potential to make a positive impact on a lot of people.

I am not a baseball player, Mr. Oransky, but I do play tennis. In tennis when you do not swing at the ball, you lose the point. People with a BRCA or other inherited cancer-predisposing mutation face extraordinary risk for a disease that is too often fatal. Many of us have lost so much to cancer. Not swinging at a disease that has a high likelihood of coming our way is not a wise option.

13 Tips for Incorporating Fitness into Your Life

I am not someone who is drawn to exercise. In my teens, I avoided exercise and didn’t take care of my body. And yet, at age 49 I find myself in the best physical shape of my life because I have learned to incorporate exercise into my routine. I have read many studies demonstrating the health benefits of exercise for cancer (and other diseases) prevention, improved quality of life, and increased chances of survival. And with research suggesting that BRCA mutation carriers may have additional cardiovascular risks, there is more reason than ever to stay active. Still, fitness doesn’t come naturally for many people, myself included.

I’m not an exercise guru, and this is not professional advice, but I would like to share techniques and tips that I have learned over the years to maximize my overall fitness and lower my chances of derailing my exercise program. In keeping with our “13 things” campaign, below are 13 tips for incorporating fitness into your life.

1. Avoid injury. Nothing can sideline a person from exercise more quickly than an injury.  Although it is impossible to eliminate all potential for injury, you can take steps to lower your risk:

• Warm up for several minutes before you begin your routine.
• Cool down after you work out and before you rest.
• Include flexibility and strength training as part of your program.
• Vary your exercise routine. Repetitive motions can increase the risk of certain injuries.
• Learn and practice good technique. A personal trainer or coach can demonstrate techniques that lower your risk for injury.
• Follow the next two tips.

2. Invest in the right equipment. Exercise gear has improved over the years. Tennis racquets are lighter and the head size has changed. Roller blades are more comfortable and faster. When I was a kid, we called all athletic shoes “tennis shoes.” These days athletic shoes are very specialized by sport. I learned that the hard way when I pulled my calf muscle while playing tennis in running shoes. Having the right shoes and equipment can make a difference. If you haul out your bike that has been sitting in your garage for five years, be sure to get it tuned up to check the brakes, tires, and gears before you ride.  And don’t forget to invest in protective gear: helmets, knee, wrist, and elbow pads can minimize the damage from a collision or fall.

3. Set realistic goals. Don’t overdo it or try to make up for 10 sedentary years in one workout. Don’t expect to be able to run or lift weights like you did in college, at least not off the bat. Not only can that approach set you up for injury, it can also be discouraging if you’re not used to exercise.

4. Be patient for progress. Sometimes small changes over time lead to big improvements. If you’re going in the right direction over time, it’s okay if your progress is slow. Monitoring your progress over time is the best way to see long-term benefits. Nike and others make free or inexpensive fitness tracking apps such as Nike + GPS which allows you to track running progress.

5. Pursue physical activities you love. There are so many ways to exercise: classes like spinning, zumba, yoga, or step; competitive sports, workout programs. Try to find two or three activities you love. Incorporate cardiovascular, strength and flexibility activities into your routine.

6. Dress for comfort and protection. If you’re like me, it is easy to become distracted when you begin exercising. Sometimes even the smallest thing, such as uncomfortable shorts, can provide an excuse to stop. Dressing comfortably helps to remove one distraction from physical activity. If you like to exercise outdoors during the day, wear a strong sunscreen (at least SPF 30), protective clothing, and a hat. Wear reflective gear if you exercise outside after dark.

7. Plan for and fit exercise into your day. The best way to assure that you work out is to plan for it and schedule it into your calendar. If you wait until the end of the day to work out, you may be too tired or run out of time to exercise.

8. Surround yourself with a positive and encouraging support system. Sharing fitness goals with someone will encourage you to exercise and stay motivated; you can help each other stay positive and achieve your goals. But beware, sometimes working out with someone else can backfire if your partner doesn’t share your motivation, goals, or level of fitness. Hiring a personal trainer (if your budget can accommodate it) can be a great way to maximize your workout, maintain motivation and stay accountable for remaining on track. Some cities have local clubs where enthusiasts for a specific activity can meet, workout and train together.

9. Silence the inner saboteur. When I’m getting ready to exercise, sometimes my subconscious sends negative messages. I’m not sure why that is, but they are intrusive and sometimes persuasive—this the same voice that tells me it’s okay to eat a pint of ice cream or finish off the Halloween candy. One motivational speaker at a fitness program I attended labeled these voices “monkey chatter.” I have found that occupying my mind with music or positive messaging silences this internal voice. Be aware of these messages and prepare yourself with rebuttals about the benefits of exercise if they pop up.

10. Set your own benchmarks. Avoid comparing your progress with others. Everyone has their own goals and pace; yours needs to be one that is comfortable for you. Trying to emulate fitness role models can be motivating, especially individuals who have achieved what you hope to accomplish. But be careful not to use their example to beat yourself up or to make yourself feel bad if you have not yet measured up to their accomplishments.

11. Create a positive environment. Try to exercise in different environments to determine what works best for you. Do you enjoy a class setting where other people can cheerlead and keep your energy elevated? If you like to exercise to music, create a playlist of the tunes that inspire you or make you want to move. If you like running, biking or hiking outdoors, find trails or paths that keep you inspired. If you prefer indoor activities, consider putting your treadmill in front of your TV (many TVs now offer closed captioning if the equipment makes it too loud to hear).

12. Expect and prepare for plateaus and setbacks. It’s not always reasonable to keep pushing and increasing your activity level daily. Some days just getting out and taking a short walk or maintaining the progress you made the week before is enough. You may have days when exercise comes easily, followed by others when it’s hard to motivate yourself to take that first step.

Once you reach your first fitness goal, it can be healthy to maintain that level for a while before pushing to your next milestone. Remember, over the long term it’s natural to have plateaus and setbacks. Try not to beat yourself up for the occasional day off.

13. Never punish eating with exercise. The goal is to make exercise rewarding and fun. Using exercise as a punishment for overeating will develop a negative association between the two. Try to approach your exercise as “me time,” something nice that you do for yourself. Over time you may come to appreciate exercise as a gift you give to yourself

Since January 2012, I have progressed from being able to run a mile to now running seven miles without stopping. My goal by next year is to complete a half-marathon before I turn 50 in April 2013 (“half marathon by half-century”). I would love to hear your fitness goals and feedback. Please share any tips and let me know if the suggestions above work for you. 

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.

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.