Every Story Matters

Since Angelina Jolie recently shared her personal experience with genetic testing and prophylactic surgery in the New York Times, public awareness of hereditary cancer is at an all-time high. The media surrounding Ms. Jolie’s revelations has also provided unparalleled opportunities for members of the HBOC community to share their personal accounts as well.

How did you learn about hereditary cancer? Was it a chance meeting with someone who was high risk? A brochure? A TV health show? For me, it was a magazine article I read back in 1997. When I was diagnosed with breast cancer at age 33, my doctors recommended a single mastectomy on one side, but they never told me about genetic counseling or testing, despite my having several red flags for a hereditary syndrome: young onset breast cancer, Jewish background, and a paternal grandmother who died young of abdominal cancer. I certainly would have made different surgical choices if I had known I carried a mutation. The article motivated me to pursue genetic counseling and testing, and ultimately, I chose prophylactic surgery, which discovered early cancer in my healthy breast.

All of our stories are important. Each story we share and every article about HBOC raises awareness and provides an opportunity for someone to recognize himself or herself in the writing and to pursue genetic counseling, testing, and risk-management options.

In a brilliant example of how awareness can save lives, reporter Stacey Sager first shared her hereditary cancer story on WABC-TV in New York in October 2011. Stacey was on a campaign to raise awareness and save lives. A 13-year breast cancer survivor at the time, Stacey had undergone testing for BRCA and found that she carried a BRCA1 mutation. Testing and BSO saved her life. As Stacey bravely allowed cameras to document her BSO, early precancerous changes were found in her fallopian tubes. (Ovarian cancer is rarely found early, other than during prophylactic surgery.) When Stacey wrote a guest blog for Thoughts from FORCE, a reader responded with the following comment, “For years my doctors have been trying to get me to take the BRCA testing because of my family cancer history, but I simply was not ready. After watching your televised story I went to the doctor the next week for my BRCA test.”

Stacey’s story resonated with and motivated more than one person. Celebrity singer/songwriter Kara DioGuardi happened to catch Stacey’s story while in New York City while she was appearing in the Broadway production of Chicago. Kara, who was interviewed by People magazine, shared that a chance viewing of Stacey’s story changed her life. Kara knew about her family history of cancer, but she didn’t know about BRCA testing until that crystalizing moment. When she returned to L.A., she immediately sought care for genetic testing, and then pursued prophylactic mastectomy when her test was positive. Kara also underwent BSO. A dear friend who agreed to be a surrogate for Kara and her husband was implanted with Kara’s last remaining embryo from prior IVF and carried their baby to term; little Greyson is now 3 months old. Kara shares more of her story in a moving interview where she gets to meet Stacey in person and thanks her for publicly sharing her story and possibly saving her life.

Experts estimate that less than 10% of the almost 1 million people in the United States with a mutation are aware of their high-risk status. We know that risk assessment and intervention can improve survival for high-risk individuals. But people cannot take action if they are unaware of their risk. It is up to us to raise the profile of HBOC until every person has access to the tools, information, and health care experts to assess their risk, and every high-risk person has the education, support, and resources they need to make informed decisions about their risk.

In her Voices of FORCE account for our Joining FORCEs newsletter, member Lita Poehlman shared how a chance meeting with a FORCE member led her to genetic counseling and testing, and subsequent prophylactic surgery discovered precancerous changes. She credits that chance meeting with saving her life. These personal anecdotes remind us that every act of sharing is significant and every story matters!

Other publications share accounts from the HBOC community, including several  memoirs: Previvors, Pretty Is What Changes, What We Have, Apron Strings, Beyond the Pink Moon, and Pink Moon Lovelies. The documentary In the Family (which is available for free viewing online until May 26) follows the intimate story of filmmaker Joanna Rudnick and several families facing hereditary cancer. Our community blog page has links to the HBOC  blogosphere, and the Voices of FORCE section of the website is filled with your stories. You can add your story and voice to our pages. Writing and sharing your accounts raises awareness about the impact that hereditary cancer has on everyday people, inspires others to learn more, engenders compassion and understanding for our community, and saves lives.

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.

Previvor Day: A Solemn Celebration

In searching for inspiration for this blog, I went back to the FORCE message boards to remember when and how the previvor movement began.  When I started FORCE, long before the organization and programs grew to the national influence that we are today, we were merely a message board, a way for people in similar situations to connect virtually. The Internet was new to me then, and the ability to reach out to virtual strangers remotely and receive comfort and guidance seemed novel and amazing. When I couldn’t find the support I needed in my immediate vicinity, I could reach out over the miles, type an SOS, and get instant wisdom, advice, and compassion. I could then draw from that support when and where I needed it (and back then I needed it a lot). Over the years many of these “strangers” have been my lifeline and many have become my dear friends. Fourteen years of survivorship later, I still periodically turn to my cyberfamily, but like many who have been part of our community for over a decade, time can sometimes softened the sharp edges of fear, loss, and grief that surrounded my diagnosis, recurrence, genetic testing, and surgeries and my accompanying need for support.

It has been a while since I revisited the archives of our website. With over 300,000 posts in our current database and over 300,000 archived posts, our message boards are the single largest repository of the hereditary cancer experience. These postings are a wealth of wisdom, support, kindness, grief, and gratitude. After 14 years of advocacy, it’s easy to focus on the challenges, the frustrations, and the problems we have yet to solve. So revisiting the past is healthy, and provides me with an opportunity to remember old friends and reflect on my growth and the growth of the organization.   Occasionally I will encounter a post that stops me in my tracks and reminds me of the sacred and transcendent segments of my own hereditary cancer journey and that of our members.

The last Wednesday in September has been designated as Previvor Day, and this year it happens to fall on Yom Kippur. The convergence of the two led me to two message board posts from over a decade ago that currently reside in our Pearls of Wisdom forum, where older timeless posts live so that others can revisit them when needed.

The first pearl addresses Previvor Day. In the “I need a label” thread, our dear “Jordan,” who was a regular on our message boards back then, articulated what many in our community were feeling—that although they did not have cancer, they had experienced decisions, losses, and procedures that separated them from average-risk women, but they did not have a cancer diagnosis. Jordan posted:

“Ok, I have to admit. I need a label. Do we have one? You know, those that have the gene but have not had cancer. The ones going through all this research and deciding on proph surgeries, or not. We need more of a voice and a label, a name. I’ve never been one hung up on labels before but a lot has changed for me since this process begun. I feel if we had a label we could begin to have more of a voice. What are your thoughts? FORCE? Breast Cancer __________ (fill in the blank).” 

Jordan, and the group of high-risk women who shared her concerns, recognized that they were cancer stakeholders who shouldered a heavy burden: ongoing doctor appointments; frequent biopsies and screenings; fear; loss of relatives to cancer, and sometimes loss of breasts, ovaries, and fertility; and changes in body image, all due to the risk of cancer. Jordan also felt that uniting the segment of the community that didn’t have cancer could promote more awareness, prevention, and surveillance research, and begin to fill their huge unmet need for support and resources.

A sometimes serious and sometimes silly discussion of how to address this gap, both online and off, followed. The medical community at the time used the term “unaffected carrier” for someone who carries a mutation but isn’t affected by cancer. But in addition to sounding dismissive, that label didn’t include members of our community who were very high risk by virtue of a strong family history of cancer without a mutation, LCIS, or high exposure to radiation. Yet these people were living with the same concerns, fears, decisions, and need for support as others in our community. Eventually “previvor” (for “survivor of a predisposition to cancer”) was chosen as our label of choice, because we all felt that those living with high risk are survivors in their own right. Not everyone embraced the term initially (and many still don’t), but for that moment, previvor resonated with many and filled a need that would allow our community to unite and advocate on issues surrounding cancer risk, detection, and prevention. These issues were separate from resources and research focused on treatment but equally important.

“AmiH,” a member of FORCE’s board of directors and our volunteer webmaster, observed “that the word ‘survivor’ comes from the Latin root meaning ‘to live’.” That connection also resonated with many previvors who felt that the knowledge of their risk and the management options available to them increased their chance to live longer, healthier lives. Not everyone wants or likes a label, and we totally understand that. Some particularly dislike “previvor,” and we get that too. But being able to identify and validate an important group of high-risk stakeholders has led to a revolution resulting in much more awareness, resources, research, and support today than we ever had in the past.

The second pearl comes from a thread started by ‘SusanZ’ [Ziva] shortly after Jordan’s. “My guardian angel, a Yom Kippur lament” is one of the most heartwrenching articulations of previvorship. It captures the devastation and impact of HBOC on entire families. I hope you will read the entire thread, but here are some of the most poignant excerpts:

“Tonight is Yom Kippur. It is certainly a day to reflect on one’s own life. In the past, I have done that in a synagogue. This year I am doing that by my sister’s hospital bedside watching her die from breast cancer. I wanted desperately to ask her to be my guardian angel from heaven…I didn’t have the courage to ask this of her yet…the reality is that in her death she remains true to how she lived, she has continued to be my guardian angel by getting genetic testing. I have found out I am BRCA positive in time to protect myself. In her death she has saved my life, and the lives of many family members.”

 In a later post, Ziva writes,

“Tomorrow afternoon I have an appointment with my second PS [plastic surgeon]… and if there is no significant change in my sister’s status, I plan to walk across the hospital to his office and make that appointment. As Linda leaves this world I am going to fight to stay.”

“I am overwhelmed by your responses…Yesterday I did what I said I would. I kissed her good-bye…and marched across the hospital in defiance of this disease and met my 2nd PS [plastic surgeon].”

 and then this last heart-breaking post,

“My sister, Linda, died this evening at 6:30 as the Sukkot holiday rolled in. I closed my eyes and again asked my sister to forgive all my insults and past hurts that occur between people who love intensely, and be my guardian angel. Your support on this website has been so important to me. You are the ones who can really understand.”

Ziva and her family have remained involved with FORCE as passionate volunteers over the ensuing years, providing guidance, outreach, and support to others. Last night, 12 years after her initial post, Ziva revisited her thread and added these thought-provoking words:

“Well, it is 12 years now since I lost Linda, and all the above is still relevant and true for me. An update: I now have a beautiful and delightful 20-month old granddaughter named Maya Linda! I think she has my sister Linda’s smile and sometimes I feel Linda (and my mother) watching over us with love and grace. Maya Linda brings me the kind of joy I found so difficult to feel since my sister’s death. This is such a blessing. 

I believe there is something quite spiritual in sharing one’s stories with others who listen with respect and compassion and then listening to others willing to share their stories. In this way we can feel connected, significant, and develop courage. Thank you FORCE family for listening and sharing. Our connection gives me hope and courage.”

Ziva, thank you on behalf of all of us. As always your words have captured the essence of our community and of FORCE. This uniting of the community impacted by HBOC—those with cancer and those without—was the goal almost 14 years ago when I founded FORCE: to connect us through our shared experiences, and despite our differences to bring each of us courage, support, and hope for today and future generations.

Happy Previvor Day.

Be empowered and be well.

Sue

The Lights of May

We were late.  The last hint of twilight faded and although we were close to home, I was nervous.  It was already 9:30, way past Beau’s bedtime, and instead of being snug in bed we were still two blocks from home. By that time I was almost running, hurrying my son when he stopped.

“Mommy, what was that?”  he pointed to a neighbor’s yard.
“C’mon Beau, we’re late,” I pleaded but he wouldn’t budge.
“No, Mommy, what is that?” he insisted, “It’s green!”

At 5 years old, Beau was in the habit of pointing out every pebble, plant, and piece of litter and dirt along the way. A walk around the block with him could turn into an hourlong adventure.  But tonight we had already walked a couple of miles to the store and back; I was tired and still had work to do. Our sleepy Florida neighborhood was generally safe, but it was still a source of anxiety for me after dark.

I was anxious a lot. And certainly I wasn’t as patient as I used to be. Putting off parenting as I pursued my veterinary career, I was 31 when Beau was born. But it seemed I had waited too long to have the family I had dreamed of when I was diagnosed two years later with breast cancer. Before my diagnosis, I was at the peak of my veterinary career.  My health had never been better, and I no reason to think my life would be forever changed by a cancer diagnosis. I had no advance warning that I had inherited a BRCA mutation and was at such high risk. My diagnosis was followed by two years of dealing with my cancer, initially with surgeries, then—when my cancer recurred—more treatment that included chemotherapy, and radiation. On May 15, 1998, after learning of my BRCA 2 mutation, I underwent a risk-reducing oophorectomy and hysterectomy at 35, abruptly ending my plan to have more children. A prophylactic mastectomy and reconstruction on my other breast followed. During treatment for the recurrence, my family relocated to Houston. All I could think about there was the time when I would finally be done and could reclaim my previous life and career.

Yet when I finished treatment and returned home, fear of another recurrence was my constant companion. It consumed almost every waking moment, sometimes leaving me frenzied to achieve all I hoped to do in a compressed moment of time. Trying to balance my veterinary career with my new role running FORCE, (back then a very new and small nonprofit organization), and still be there for my son and husband while battling constant anxiety was taking its toll. I was struggling to keep my head above water professionally and personally, and failing. Two years since returning home to Florida, after all the treatments and prophylactic steps I had taken to survive, I wasn’t really living. And my husband and son, the two people who needed me the most, shouldered much of the collateral damage from my unhappiness.

Tonight walking with Beau seemed no different. As I tried to hurry my son, I was oblivious to his world. I grabbed his hand and pulled him along.

“Beau, it’s probably just a piece of garbage!”

“Mommy it’s a green light!”  he insisted.  “YOU HAVE TO STOP!”  Beau didn’t often defy me, and his insistence took my by surprise. There were so many things pressing down on me; yet, for one moment I considered what my son was saying. For the first time in a while I thought about things from his perspective. I took a breath and I stopped with him.

“I don’t see anything.”
“There it is again!”

I studied the darkness of our neighbor’s yard for a glimpse of Beau’s mysterious light.  There. And there. What had been invisible a moment ago was suddenly revealed. A firefly, several, actually. Bright green flashes, blinking intermittently in the dark.

I was amazed. “I don’t believe it Beau, those are fireflies!”  I told him about the fireflies in New York when I was a child. During my 11 years living in Florida never once had I seen a firefly here. The hurry for bedtime and my weariness now forgotten, we watched Nature’s lightshow together for the next 30 minutes.

The following evening we could hardly wait for dark. It didn’t take long for the show to begin. We chased after the flying lights, then caught one and studied it.  It flashed and tickled in our hands.This firefly was different than others I had seen; the light came from its head. A beetle with glowing eyes!  Later, the Internet informed us our flying friend was Pyrophorus, the only bioluminescent click beetle.

We chased the fireflies for the next few weeks, even relocating some to our own yard. I spent many happy moments reconnecting and sharing joyful times with Beau. How long it had been since I had felt that. That spring, along with the flowers and the fireflies, hope and happiness were emerging; emotions that I had suppressed since my recurrence. From then on, every May, watching for the fireflies became a sacred ritual shared between Beau and I.

Pyrophorus – Photo by Adrian Tween

Sometimes it’s the small moments that emerge from the large and scary events in life to define us. That night, seeing the world from my small son’s perspective opened me up to the joy and wonder I had been missing. Sometimes a tiny dose of joy reminds us how attainable it can be. Since my oophorectomy, May had been a time of grief for me. That spring night restored many gifts that cancer had taken and helped me to recapture and hold on to the connections that had made all my treatments worthwhile.

Several years later, I gave up my veterinary career to dedicate more attention to FORCE and my family. I still think of that night as a pivotal moment when I was reminded what was really important. I still get stressed and anxious and I still sometimes feel there is not enough time to accomplish all that I hope to in life. But I have gained more perspective-more ability to see the world through the eyes of a child.

Although I have heard the glowing beetles can be found here in Tampa, where we moved eight years ago, I have yet to see them. But it is May, and I haven’t looked for over a year. Tonight I will make time to see if I can find one.

Guest Blogger: Knowledge IS Power

Guest blogger and Phoenix Outreach Coordinator, Lisa Edwards shares her story and thoughts on why she feels supporting FORCE is so important.

I grew up watching my grandmother, two aunts and mother battle breast cancer, each of them having it more than once.  As a young adult, I knew that I needed to be the generation that started to change things.  I wanted
a different life for my future and that of my children.  I give thanks to FORCE for helping me make that change.

When I had my PBM in October of 2008, I was the first of my family, first of my friends and first of both my general and plastic surgeons’ patients to prophylactically remove my breasts.  I had to explain what I was doing and why many times.  The universal knowledge wasn’t quite there yet but as I would learn later, I was a part of a revolution that changed the way we confront hereditary cancer risk.

Now in 2012, I am astounded by the awareness and campaigning efforts for HBOC.  FORCE and those that support it have come so far in making the BRCA mutation a household name.  Because we have made information so readily available to those around the world, I believe we are saving lives every day: both from the possibility of disease but also from the fear that plagues all of us at high risk.  With as much as we have accomplished thus far, we still have work to do.

We need more research that is specific to our hereditary risks.  FORCE knows how vitally important this is and is working hard at promoting the Hereditary Cancer Research Fund.  The funds raised are being used to gain more knowledge with new ways to arm ourselves and the future generations to come.  The knowledge I was provided by FORCE in 2008, saved my life.  Let’s continue to give this powerful gift to many more!

Visit the FORCE website to learn more about and support the Hereditary Cancer Research Fund.

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.

Holiday Guest Blog: Joanna Rudnick

FORCE member Joanna Rudnick, producer of the documentary In the Family  wrote the following special holiday blog.

Of Holiday Miracles and Possibilities

by Joanna Rudnick

This time of year is all about the great miracles and the infinite possibilities.

For most of us, miracle and possibility are the last words that come to mind when we get a positive test result for a BRCA mutation. At least they were for me. (I can think of a number of other choice words that I uttered, many of which are not appropriate to write here.)

Grieving for all that I immediately wrote off – health, happiness, future, motherhood, love – I failed to realize that I was sitting on top of a heap of little miracles that would alter the course of my life and make the impossible…possible.

From “coming out” and feeling up my first pair of breasts on camera to the birth of my baby girl, this crazy, unexpected, grueling, electrifying, terrifyingly, humorous, humbling, raw and beautiful road was paved with tiny miracles:

Miracle #1: Dr. Mary-Claire King – how lucky are we that this brilliant scientific mind, fueled by the incomprehensible loss of a childhood friend to cancer, dedicated her life’s work to tracing the familial link for breast cancer down to the molecular level. Picture the countless late nights she spent pouring over pedigrees that stretched the length of the floor in her lab and beyond to get us where we are now.

Miracle #2: Our mothers, fathers, sisters, brothers, grandmothers, grandfathers, great-grandmothers, great- grandfathers, aunts, uncles, great aunts, great uncles and cousins, who left us their health histories  - our most valuable clues – so that the next generations would not suffer in silence with the disease that cut too many of their lives far to short.  

Miracle #3: FORCE! Thirteen Years ago, Sue Friedman had the chutzpah and dedication to leave her successful career as a veterinarian to create a home for all of us. Her one-person-machine turned into thousands of families from around the world coming together to share information and offer support and encouragement to each other.  (Miracle #3A: Sue was the first person I called when I launched In the Family and she immediately jumped on board.)

Miracle #4: in the spirit of true collective action, We came together as a community to fight for protective legislation to prevent health insurers and employers from discriminating against people based on their genes; We supported the ACLU in their challenge to the BRCA patents – a case likely to be heard by the Supreme Court; and We continue to fight against funding cuts for breast and ovarian cancer research.

Miracle #5:  Debbie Wasserman-Schultz – The head of the DNC is not only out about being BRCA+, her breast cancer diagnosis and her surgeries, she is actively fighting in Congress for more research dollars, education and awareness programs.

Miracle #6: The Good News -That we have the ability to find out; that there is surveillance and prevention and that both are getting better (the real miracle will be a reliable blood marker for early detection of ovarian cancer); that we can talk about BRCA and people know what we’re talking about; that fertility options are improving at a rapid pace (although, no more affordable) and reconstructed boobs are getting even hotter; PARP inhibitors; the Affordable Health Care Act (say goodbye to discrimination based on a pre-existing condition); and being part of a community where all of our choices are respected no matter which path we choose.

Miracle #7: The Silver Lining (this one is personal) – The people in my life who got me to see the possibilities (and these are only a few; there are too many to list)– Linda Pedraza, “It’s life and you don’t mess with that”; Martha Haley, the poet warrior; Cookie and Lewis Rudnick, it’s all about family; Jordan, loves me anyway and every way; and Eloise, I can’t put it into words.

Wishing you all happy, healthy and fulfilling holidays.  Here’s to a 2012 full of more miracles in the BRCA world.

Love,

Joanna Rudnick

In honor of the season, please share  your holiday blessings and miracles with us! Happy Holidays!

Best Gifts of the Season

The holidays are a very sentimental time for me; there are a lot of reminders of my hereditary cancer journey. The season is about so much more than gift-giving. Nevertheless, I thought that it was appropriate and timely to share my all-time best gifts in my blog.

The most romantic gift I ever received
In late December 1997 the holidays felt bleak. My husband, son, and I were displaced from our home to Houston while I went through treatment for my recurrence. I was not licensed to practice veterinary medicine in Texas so we had no income. With no friends or family nearby, we had only each other.

My fourth round of chemotherapy hit me hard. I remember getting out of bed one December morning and feeling my heart racing, 100 beats-per-minute at rest.  It was hard to believe, the day before I had felt great, and walked a few miles for exercise. That morning I could barely move my head without my heart pounding like a jackhammer. My oncologist insisted I come right over. My blood count was dangerously low.  He wanted me to have an immediate transfusion. The blood supplies were low, due to increased demand during the holidays. Dan, my husband, is O-negative; universal donor. Without hesitation he volunteered a directed blood donation for me. As I sat in the infusion center receiving the transfusion, I felt my heart slowing, my energy returning. For a year where gifts and blessing were hard to come by, I was reminded of my blessings when my husband gave me the most romantic gift ever, his blood.

The best gift I ever gave myself
Fast-forward a year and although 1998 was a difficult year—I finished chemotherapy, radiation, had an oophorectomy and my contralateral prophylactic mastectomy—it also marked my completion of treatment and my reclaiming of my post-cancer life. My family and I were back home by late November, 1998. I spent a lot of time on the Internet looking for support as I faced challenges and issues as a result of my recurrence, treatment, surgery, and menopause. Through breast cancer message boards I found a support system and amazing people many of whom are still dear friends. I met women who were going through or who had gone through cancer treatment, and others who, like me, had a BRCA mutation or were facing hereditary cancer. I also met a special group of people who were very high risk and had no cancer. It was clear that all of us facing hereditary cancer journeys had unique issues and needs that were not met by traditional cancer support sites. It was December 1998 that I decided a dedicated resource was needed to meet the support and information needs of the hereditary cancer community. New Years Eve, 1998, I began the message boards that became the foundation of a new community and organization. My first post was just a few seconds after midnight and a few minutes later I received a response. Early New Years Day, 1999 FORCE was born. People often tell me what a great gift FORCE and our community has been for them. But it was my own need for support and resources that led to the creation of FORCE, and a new and fulfilling career path that allows me to touch others lives in significant ways. Hands down FORCE was the best gift I ever gave myself.

The best gift I have received so far this year
December is the time of my annual rechecks. This year marks my 13-year post-treatment recheck. The best holiday gift I have received so far this year came today from my medical oncologist: “your tests are all normal, see you next year.”

Happy Holidays to you and yours. Every day is a gift. Celebrate. Be happy. Be healthy. Be well.

HBOC Week was a Success: Let’s Sustain Awareness All Year Long

The squeaky wheel gets the grease. We have heard that saying so many times it has probably lost its true meaning. “Breast cancer awareness” and “ovarian cancer awareness” are terms that also can lose meaning over time. What does awareness mean? Does it really help in any way? Can awareness change behaviors? Can it save lives?

Most people are aware of cancer. They know it exists. They know someone who has been touched by it. By contrast, most people are not aware of hereditary cancer, even when it runs in their own family. Some may have heard of it, but the key facts may escape them. When I was diagnosed with breast cancer at age 33, I had a medical background, and I understood that diseases could have hereditary components. But I didn’t associate my own diagnosis and my paternal grandmother’s young demise from abdominal cancer with a genetic predisposition to cancer. I was unaware of genetic counseling and testing until I read a magazine article about HBOC. From the information in the article I recognized that I had several of the indications for a hereditary syndrome. My health care team never realized I fit the criteria for BRCA testing. It was the dawning media awareness about HBOC that helped me learn about my own BRCA 2 mutation. Since founding FORCE I have heard from countless other women that reading a FORCE brochure or an article about one of our members helped them make the connection between what was going on in their family or understand how genetic counseling may be relevant to their situation. Taking it one step further, many of these same women indicated that surgery found breast or fallopian tube changes that likely would have led to cancer. We know from research that risk management options can increase the life span of high-risk women. 

So when we talk about awareness of HBOC saving lives, it is not an abstract concept. This year thanks to your support and efforts, we reached more people than ever during HBOC Week. We had more media attention. Our outreach groups had more events. Our website traffic increased by 26%. Our newsletter mailing list grew by 14%. Attention among government agencies and researchers leads to more focused efforts to address the disproportionate cancer burden our families face. These tangible successes equal lives saved for members of our community.

Here is my top five list of reasons why HBOC awareness is important:

• The single factor associated with the biggest risk for breast cancer is having a BRCA mutation.
• Most people who are very high risk for cancer are unaware of their risks.
• Cancer screening and prevention recommendations for average risk people are inadequate for those with hereditary cancer risk.
• The more people hear about HBOC, the more likely they are to explore their family medical history and seek out genetics professionals.
• Identifying and preventing cancer in high-risk people has been shown to save lives.

Five things you can do to sustain awareness:

• Watch and share our video. “Like” it and post it to your Facebook page.
• Contact your local FORCE outreach group.
• Volunteer to help FORCE. We have lots of opportunities.
• Make a donation to FORCE. Support our research fund initiative.
• Distribute FORCE brochures.

Let’s continue to drive awareness and increase our momentum. We need more successes like this. Share this blog and lets make the next 12 months HBOC year!