Thirteen Ways FORCE will Serve Our Community in 2012
On New Year’s Day we celebrated FORCE’s 13th birthday! Over the course of this year, we will highlight the significance of this milestone with blogs that emphasize the theme of “13.”
As my first blog of the new year, I am excited to share 13 things that FORCE will do to serve the hereditary cancer community in 2012.
- Our new book, Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny is a Johns Hopkins Press Health Book that is available for preorder and preview on Amazon. The book will be widely available in February.
- This month we are launching our inaugural FORCE Research Advocate Training (FRAT) Program that will train members of our community to become engaged in research review and safety panels. Training topics include cancer 101, basic genetics, introduction to clinical trials and research, patient protection, ethics, and more. Space is limited; however, there is still time to apply for participation. Contact Lisa Schlager (lisas@facingourrisk.org) to apply for this program.
- Save the date for our Joining FORCEs conference: the largest annual gathering by and for the hereditary cancer community. Our 2012 conference will be held October 18-20, 2012 in Orlando.
- Our free “Be Empowered” webinars feature presentations by experts on topics of importance to our community. Our next two webinars will be on breast surveillance and updates from the IMPACT Study for men with mutations. Please check back soon for the dates and registration information.
- More than 50 outreach groups in the United States offer peer support, information, and resources. FORCE also has international groups. Our outreach coordinators act as a point of contact and offer face-to-face support meetings for our members.
- Our toll-free helpline provides peer support and resources for people who are concerned about hereditary cancer. We recently also launched our helpline for Spanish‐speaking callers.
- Our Patient Experience Contact Tool is a searchable database of surgeons who have provided services to community members, who can connect one-to-one and share information about their experiences. If you have had surgery to treat or prevent breast or ovarian cancer, please consider entering your information. If you are facing surgery, this tool can help you get feedback and referrals for surgeons in your area.
- Our Genetic Mutation Database is searchable by mutation and ethnicity and helps connect people who have the same mutation.
- FORCE will honor hereditary cancer previvors and survivors and recognize the challenges they face during National HBOC Week (the last week of September) and National Previvor Day (the Wednesday of the same week). FORCE made history in 2010 with its successful effort to pass a Congressional resolution officially acknowledging these significant days.
- Our Post Mastectomy Photo Gallery shares images of women after mastectomy and reconstruction. Coming this Spring, we are updating the gallery to allow women to post their own postsurgical photos.
- Show & Tell: The Book will be a new resource with photos of women after mastectomy with and without reconstruction. Available in the Fall, this resource will feature the models’ personal comments about their experiences, information about their surgeries, and references to relevant chapters in The Breast Reconstruction Guidebook by Kathy Steligo.
- We will continue to advocate strongly for hereditary cancer research. For example, it has now been seven years since we introduced our community to PARP inhibitors as targeted cancer therapy for people with BRCA mutations. (Although initial studies have been promising, due to many challenges the research has not yet progressed to trials to seek FDA approval.) Check our advocacy pages in the coming months for updates.
- We will continue our efforts to endow our Hereditary Cancer Research Fund to make a difference and improve prevention, screening, and treatment options for people with hereditary cancer through research. Stay tuned for opportunities to provide input as we assess our community’s research priorities.
Happy New Year and Happy Birthday to FORCE
Tonight at just after midnight, FORCE and this community will celebrate our 13th birthday. It is hard to believe that it has been thirteen years since I founded FORCE, on New Years. As the new year rang in, I was sitting at my computer, fresh out of treatment and prophylactic surgery, posting on a brand-new website and putting out the call on other boards for women who had hereditary cancer or a BRCA mutation in their family to come post on the message boards. I felt alone, there was no organization, and no community that recognized the impact of hereditary cancer or that provided a sense of understanding and unity for those like me with a genetic predisposition to cancer. With my first post came the beginning of FORCE. On New Year’s every year since, I wax nostalgic about that day and about the amazing growth of this organization into the voice and heart of the hereditary cancer community, and a FORCE for support, resources, empowerment, and change.
As the new year rolls in, I will try to take some time to reflect and celebrate our accomplishments even as I look forward to new initiatives and addressing the ongoing challenges we must overcome. I hope that 2012 brings all my FORCE friends good health, hope, friendship, love, support, and well-being. May this year be the one that brings us new and better research, treatment, detection, and prevention options. May our community continue to grow. May we find new friends, honor old friends, and remember those departed. May each of us give and receive in equal measure love, support, and friendship.
For everyone reading this blog and for everyone who is part of our great community, Happy New Year my friends, and happy birthday to FORCE.
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.
Guest Blogger: Author Kathy Steligo
Kathy Steligo, FORCE’s editor-at-large and author of The Breast Reconstruction Guidebook wrote the following guest blog.
Reconstruction: Many changes, many choices
by Kathy Steligo
If you’re facing mastectomy to prevent or treat cancer, you have more choices for breast reconstruction than ever before. New breasts can be created with saline or silicone implants, or if you have excess fat that you’d like to put to good use, your own living tissue. Both reconstructive approaches can be done in different ways and have advantages and downsides. And both have benefited from recent innovations. Newer implants are believed to be less prone to ruptures and leaks, and more surgeons are offering direct-to-implant (“one-step) reconstruction. The number of surgeons who perform advanced tissue flap procedures is also increasing, making flap reconstruction that uses just skin and fat and doesn’t affect muscle functionality more available.
Not all reconstructive procedures produce the same results. A lot depends on your chest structure, the quality of your breast skin and tissue—including whether or not you’ve had radiation—and the reconstructive option you choose. Selecting the right surgeon influences your outcome more than any other factor. But not all surgeons perform all procedures, and the availability of different reconstructive methods varies widely. It’s important to do your own research and make your own informed decisions about when, where, and how to have reconstruction, or whether to have it at all. Not every option may appeal to you, and you may not be a candidate for all of them, but it will be well worth your while to learn about them before deciding which, if any, is right for you.
If you’re considering reconstruction, remember three important steps:
- Research and understand reconstructive options before you choose one (The Breast Reconstruction Guidebook will help you do that).
- Consult with more than one plastic surgeon.
- Choose a surgeon who is very experienced in the technique you prefer.
If future scientific breakthroughs provide ways to prevent breast cancer or treat it without removing the breasts, reconstruction will become obsolete. Some day, it might even be possible to repair damaged genes so that previvors won’t have to sacrifice their breasts to reduce their cancer risk. Until then, promising technologies are being explored. Tissue engineering, the same science that prompts stem cells to develop new organs, has already shown that it is possible to “grow” new breasts in a lab environment. Practical applications are probably years away, but other projects already in the research pipeline may produce discoveries that streamline and ease the reconstructive experience. Researchers are testing self-controlled tissue expansion (you inflate expanders at home, at your own convenience), reducing the entire expansion process from several weeks to just two. One of the most promising areas of development involves new ways to stabilize fat from the hips, thighs, abdomen or buttocks so that it can be liposuctioned and injected (rather than surgically transferred) under the breast skin to form new breasts. By stabilizing and enhancing the fat with stem cells, more of it stays where it is wanted, perhaps facilitating entire natural tissue reconstruction without the intensive surgery and recovery associated with current procedures that transfer flaps of fat to the chest.
Note: FORCE has many resources (and some in development) on reconstruction including:
- Our reconstruction photo section of the site that allows women to upload their before and after photos (we are in the process of updating the site so women can add their own reconstruction photos)
- Show and Tell, the book, which will feature positive and powerful photos of women with, and without reconstruction after mastectomy (the book will be published in Spring 2012).
- Our Patient Experience Contact Tool allows you to search by surgeon, city, state, or type of surgery and contact patients who have used the same surgeon or had the same procedure. If you’ve already had surgery, submit your contact information to help others make surgical decisions.
- Our annual Joining FORCEs Conference which features several plastic surgeon speakers and our popular Show & Tell Room.
A Thanksgiving Gift
I remember Thanksgiving 1997. It was a particularly hard time for me, because I was on chemotherapy for my breast cancer recurrence. Transplanted from our home to Houston for nine months while I underwent treatment, my husband, toddler son, and I had no friends in Houston; our only support was each other. Just before Thanksgiving, my white blood count went down to 50—dangerously low. My doctors prescribed daily outpatient shots to boost my white blood cells, but my health insurance company required that I take the shots in the hospital. I remember battling it out with the insurer but the company wouldn’t budge. So I grudgingly drove to the cancer center each day and spent my Thanksgiving weekend there.
I spent a good deal of time at the cancer center and felt pretty comfortable there. The Friday after Thanksgiving, however, I was feeling sorry for myself. I was afraid to go out with such a dangerously low blood count, and I was upset that I had to spend the holiday weekend getting medical treatment. As I was waiting for my injection, I saw a young couple with the “deer-in-the-headlights” look that distinguishes the newly-diagnosed. Clearly scared, uncertain, and overwhelmed, they looked like they could use a friendly face. I went to talk with them.
The husband had been diagnosed with pancreatic cancer. They were there for a second opinion but thought they might stay for treatment. We traded stories, fears, and hopes and then I passed along some advice. “I decided early on that I would embrace whatever treatment my doctors recommended, no matter what it was,” I told them. “Every chemotherapy infusion, every radiation treatment, any surgery they recommended, I vowed to myself that I would embrace whatever they said was best for me.” It wasn’t earth-shattering advice but it was sincere and what I had to offer, and the couple seemed very grateful to receive it. It felt good to be able to help other people and the effort required was so small. It took my mind off my own problems and helped me focus on ways to turn my own challenges into change for others.
Six months later, I had completed treatment and also learned that I carried a BRCA2 mutation. To avoid hearing another cancer diagnosis, I chose to have a prophylactic oophorectomy and give up my dream of having a second child. I didn’t know a single soul who had had the surgery, and I was terrified of the early menopause oophorectomy causes and its possible implications. My surgery was early in the morning and so I spent the night before in the hospital. My son had a cold and because we had no babysitter or family to watch him, my husband had to stay with him and couldn’t visit me either. It was one of my darkest moments. I was alone, truly alone.
I am not a religious person but the hospital had a chapel and suddenly, I felt the need to be there. I sat in the quiet, sacred space and meditated on the stained glass. I tried to reach a calm mental state and embrace this new part of my journey, but I couldn’t quite achieve peace. I left the chapel to walk back through the almost-empty halls to my hospital room. Walking towards me was a couple who seemed familiar but I couldn’t quite place them. They stopped me. The woman said, “I don’t know if you remember us, but we remember you from the first day we were here. We were terrified with my husband’s diagnosis. You were so reassuring and gave us the best advice we have received: that we should embrace whatever treatment was recommended. And that is what we did. My husband is doing great so far. I never thought we would see you again, and here you are. I just wanted you to know how much you eased our minds at one of our most difficult moments.” We hugged and I then headed back to my room. Being confronted with my own sage advice made it easier for me to find solace and tranquility in my surgical decision. At a time when I most needed reassurance, I allowed myself to accept my own comforting words coming from others and embrace my impending surgery.
I was talking with a friend recently about how nervous I am about my annual checkups that are always scheduled around the holidays. Going back to Houston, being alone at the hospital around the holidays, and any new assortment of aches and pains dial my anxiety up a notch and bring me back 15 years to when I was in active treatment. How do I deal with cancer on a daily basis, as a career, without personalizing it and without being paralyzed by it? Initially it was hard. I was obsessed with cancer and what felt like my body’s betrayal, and the constant fear that my cancer would come back. I failed to realize the things related to my cancer experience for which I am now truly thankful. It’s easy for us to avoid things that scare us, but if we run away, we lose an opportunity to connect with people emotionally. I discovered a funny thing on my cancer journey. If I could use my energy to help other people, it lessened my own fear, sadness, and pain. And maybe that good deed will someday be returned to me at an unexpected but needed moment.
As we approach another Thanksgiving Day, I am thankful I chose a path that led me to a career with FORCE and the opportunity to help others on a daily basis. To all of you and your loved ones, I wish you a very happy Thanksgiving!
Guest Blogger: Reporter Stacey Sager
Reporter Stacey Sager wrote the following guest blog. Many FORCE members followed her personal and moving story in the recent video that aired on WABC-TV in New York City.
What I’ve Learned from “Being BRCA”
by Stacey Sager
They say lightning doesn’t strike twice. Well, any of us who test positive for a BRCA1 or BRCA2 mutation certainly know it can. With the risk for both breast and ovarian cancer so incredibly high in our lifetimes, and with more and more aggressive surveillance, I do believe doctors are learning more as the years go by.
Unfortunately, medical trials haven’t moved far enough to offer us the options we so badly want for our daughters—less invasive surgery or the best case scenario: a pill to prevent cancer.
I’ve learned a lot these past few months about “being BRCA,” as I call it. Some of you may have seen my stories on WABC-TV in New York on how I battled breast cancer with a double mastectomy 13 years ago, and how only recently, I decided to go in for genetic testing after I gave birth to both of my children.
I learned I have a BRCA1 mutation, and after going in for risk-reducing surgery to remove my fallopian tubes and ovaries, doctors discovered a pre-invasive cancer in the lining of my fallopian tubes. This prompted even more surgery—the removal of lymph nodes, my uterus, abdominal tissue, and cervix. My doctors saved my life. Genetic testing saved my life. I am so grateful for that.
But what is truly significant about cases like mine, where doctors find pre-invasive cancer in the fallopian tubes at the time of prophylactic surgery, is the potential impact on the future of screening and treatment for women who have BRCA mutations. Scientists theorize that many of these hereditary ovarian cancers may actually start in the fallopian tubes. This has led to the development of a research study where doctors will use a small scope to examine the fallopian tubes. The study—which is not yet open–will initially look only at women undergoing risk-reducing surgery. But if it’s successful, someday it may be feasible to screen for cancer by looking at our fallopian tubes. Better screening could eventually allow us to safely keep our ovaries longer. Now wouldn’t that be something???
Some of you may already know that right now, there are trials going on in which researchers in France and Canada are looking at whether the removal of the fallopian tubes might lower the risk for gynecologic cancers. FORCE has been working with researchers to open salpingectomy trials in the United States. The significance? If, God forbid, our daughters have this mutation and need risk-reducing surgery, perhaps they can prevent early menopause just by having their fallopian tubes removed and wait until after menopause to remove their ovaries.
Preimplantation Genetic Diagnosis (PGD) now allows parents pursuing in vitro fertilization (IVF) to selectively implant embryos that don’t have BRCA mutations. I’m unsure how I feel about this, but some young women with mutations have pursued this technology to break the cycle of cancer in their family.
The progress being made in genetics is exciting. Research on PARP inhibitors, new targeted therapy that may work most effectively on hereditary cancers, intrigues me. Doctors also assure me that the silver lining for those of us who have these mutations is that our cancers are more easily explained. Doctors can predict them. And that improves detection, prevention and treatment.
Life is full of risks. The difference for those with BRCA mutations or other inherited mutations is that we are born with our exceptional risk. We had no choice or say in this and have limited choices on how to mitigate these risks. But I believe that keeping this discussion alive will allow research to move forward. Our lives and the lives of our daughters, DEPEND on it!
Guest Blogger: Author, Amy Boesky, PhD
The following blog was written by author and FORCE member Amy Boesky, whose inspiring, poignant, and eloquent memoire, What we Have chronicles her family ‘s battle with hereditary cancer. Her highly-acclaimed book resonates with so many in our community.
What we Need…More Research
by Amy Boesky, PhD
The word research is both a noun and a verb. It comes from the middle French word rechercher, which means “to go about seeking.” Sue Friedman has spoken eloquently about the need to establish a research fund for the BRCA community. The importance of this message came home to me last spring, when I was asked to speak on risk-perception in members of high-risk breast and ovarian cancer families. I was lucky enough to hear Dr. Judy Garber from the Dana Farber speak at the same event. At present, the best option for BRCA-positive women awaiting (or delaying) mastectomies is surveillance. Dr. Garber described a new trial using low doses of PARP inhibitors in the hopes of preventing tumor growth. If the trial succeeds, women with BRCA mutations may have an effective treatment allowing them to delay surgery while reducing cancer risk.
Coming from a BRCA1 family, I had preventative surgeries in my thirties, but I want my daughters–in their late teens now–to have more options than I did. I find especially heartening the idea that affected women in their 20s and 30s may benefit from ongoing research protocols.
In May, I visited a lab at the Dana Farber that researches ovarian tumors–many of which originate in the fallopian tubes, not the ovaries themselves. The director of the lab told me about a Canadian trial that will follow young, high-risk women undergoing surgical removal of their fallopian tubes while leaving their ovaries intact. Trials like this could allow affected women to keep their ovaries longer, a critical option for many young BRCA-positive women who hope to have children.
Unfortunately, too few studies like these are underway. As a recent issue of the Journal of the NCI noted, SERM trials (analyzing the benefits of selective estrogen receptor modulators, such as tamoxifen, in preventing tumor growth) “have not included many BRCA carriers.”
We need more research. The larger breast-cancer community has been exemplary in terms of advocacy and fundraising, but we’re not all equally at risk. The BRCA community shoulders higher risk of disease while receiving considerably lower funding for its study and treatment. We need real dollars to support real research to prevent and treat very real risk. We need to get busy, to “go about seeking” answers to all the questions we still face unanswered.
Recently, I had a conversation with a friend who’d read the book I wrote about my family’s experience with BRCA1. Out of 4 women in the two generations before me, 3 died in their 40s (of ovarian cancer). The last, my mother, made it to 59 before succumbing to breast cancer. The friend said she liked my book. “Honestly, though,” she said, gazing quizzically at me, “doesn’t everyone gets something? Aren’t we really all at risk?
I wasn’t sure how to answer. True, we’re all mortal. Everyone gets something—sometime. But we’re not all equally at risk. There’s nothing wrong with solidarity and marches and shopping mall events when it comes to raising awareness about breast cancer. Ultimately, research on the larger breast cancer community will benefit those of us with BRCA mutations, and vice-versa. But that doesn’t change the fact that BRCA positive individuals carry much greater risk, and require focused scientific attention on every aspect of testing, prevention, diagnosis and cure.
The HBOC community needs our own dedicated research fund. It’s time to get serious about seeking information, not hiding from it. As a community, we have more options than our mothers did. Let’s do what we can to make sure our daughters can say the same.
Visit the FORCE website to learn more about or support our Hereditary Cancer Research Fund.
