Summer 2006
Contents
Ovarian Cancer Prevalence and Detection
Facing Our Risk of Cancer Empowered and Relaxed
Voices of FORCE
(to search past issues of our newsletter)
Voices of FORCE
Each quarter,we’ll invite a FORCE member to share an insightful perspective, a valuable experience, or a touching story to help others who are dealing with issues of hereditary breast and ovarian cancer.
Two Days of Information, Inspiration, and Answers
By Drea Thew
FORCE’s first national conference could not have come at a better time. I have known about my BRCA2 mutation for five years, since I was 29. After a lot of consideration, I chose to manage my breast cancer risk with aggressive surveillance until age 35 or so, and then reassess my options. In January of this year, however, I was diagnosed with DCIS. I knew that if this day ever came, I would choose bilateral mastectomies with immediate reconstruction, but I had no idea what type of mastectomy or reconstruction would be best for me. Because my healthcare team recommended surgery within six weeks, I had a lot of research and important decisions to make in a relatively short period.
Two weeks after my initial diagnosis, I was in Tampa. Nearly 200 attendees and almost 20 presenters, including three plastic surgeons and an unknown number of reconstructed breasts! Talking to real women about their experience with bilateral mastectomies and reconstruction, and seeing (even feeling) their results in person gave me more information in a few days than I could have found in months of reading or looking at pictures. The generosity and openness of these women was breathtaking. The Breast Reconstruction Options presentation was very valuable, opening my eyes to three different procedures and what they entailed.
Although reconstruction was front and center in my mind, that was certainly not all the conference was about for me. I was inspired and moved by Joanna Rudnick’s screening of In the Family, and I learned a great deal from many of the presenters. I thought I knew a lot, for a layperson, about this BRCA business. I was fascinated and amazed by some of the new information and insights I got from these researchers. Dr. Rebecca Sutphen, a researcher at Moffitt Cancer Center, will always hold a place in my heart for finally explaining proteomics to me in a way I could almost comprehend! I was especially interested in ovarian cancer risk management for BRCA2 mutation carriers who don’t have breasts (I will soon be in that category). I came away from the conference feeling like I have a good sense of the best way for me to proceed in terms of this very scary cancer.
As much as I learned from the experts, it was invaluable to connect with and learn from so many women who understand what living with hereditary breast/ovarian cancer risk means. And it was just plain fun hanging out for a few days with such intelligent, compassionate people.
On March 13, I had bilateral areolar-sparing mastectomies with sentinel node biopsies on both sides. I had immediate expander placement with AlloDerm®. Later, I will be getting silicone cohesive gel implants. I am still recovering from surgery, and am far from completing the process, but I am happy with my decision and thrilled to have the fear of breast cancer behind me. Although the surgery choices I made aren’t quite like any of those of the women I met in Tampa, I can honestly say I wouldn’t be as comfortable without the privilege of attending this conference at such a crucial time in my life. FORCE to the rescue, once again!
Drea Thew lives with her partner, Jennifer, and their daughter in central Vermont.
Understanding Choices, Making Decisions about BRCA
Finding you have a BRCA mutation or inherited risk for breast and ovarian cancer can be unsettling and confusing. But you’re not alone. FORCE offers a wealth of information and support. We can point you in the right direction if you’re looking for a genetic counselor, put you in touch with others of similar background and choices, or give you encouragement and a hug (either the cyber or in-person variety) when you need it the most.
Being “at high risk” means you have choices about your risk management options:
- Chemoprevention (medications to lower
your risk for breast cancer and/or ovarian
cancer) - Surveillance for breast and/or ovarian
cancer - Prophylactic surgery to reduce the risk of
breast cancer and/or ovarian cancer - Participation in research studies looking at
risk-management options
Making an informed decision about these choices requires understanding of what each involves. The following five steps will help organize your actions to put you on the decision-making path.
- Let FORCE help (visit our website or call our Help-line)
- Consult with a genetic counselor to sort out your risk for breast and ovarian cancer
- Involve gynecologic and breast specialists who are knowledgeable about hereditary cancer risk
- Weigh the benefits and limitations of each option
- Choose the risk management option that is best for you
See the FORCE website for information, links, and resources for breast and ovarian cancer survivors and pre-vivors (survivors of a predisposition to cancer). No matter where you are in the high-risk journey, FORCE is here to help and support you.
Considering Reconstruction?
If you're sorting through your reconstructive options, we recommend The Breast Reconstruction Guidebook by FORCE member Kathy Steligo. Order at Amazon,
www.breastrecon.com, or call 800-431-1579.
Conference Webcast
A free webcast of the audio and PowerPoint slides from our 2006 Joining FORCEs conference is now available at www.facingourrisk.org/webcast.
Share Your Story
Do you have something to say that may inform our readers or easetheir experience? We invite you to share your reflections or personal story about dealing with the issues of hereditary breast or ovarian cancer. Tell us how you feel, how you cope, or what you’ve learned.
E-mail stories of 500-550 words to:
or mail to
FORCE
16057 Tampa Palms Blvd. W. #373
Tampa, FL 33647.
Please include your name and daytime telephone number so we can contact you if we decide to publish your story in a future issue.
Provide your feedback on this newsletter or this story here.