Part II Let the FORCE be with you. It could save your life.
Behind the scenes at a FORCE conference.
What is FORCE?
FORCE stands for Facing Our Risk Cancer Empowered, www.facingourrisk.org. FORCE is the only national nonprofit organization devoted to hereditary breast and ovarian cancer. FORCE provides amazing support through message boards, local chapters and programs like SOS (Support our Sisters). The website is a great tool for research, education and support specific to hereditary breast and ovarian cancer.
Attending the conference: Day 1
My mother, who loves to do research, found FORCE online after I found out I had BRCA1. We both attended the conference in 2010. Today, the conference attracts hundreds of women from all over the country and many from other countries as well, all who have the BRCA mutation.
On the first day of the conference you are given a schedule of the days of lectures and events, a tote bag with filled with pamphlets and brochures about BRCA, research and goodies like pens. When you enter the main conference hall, there are piles of Mardi Gras beads on tables. Get the party started! This was such a fabulous idea to help connect and identify people by their status. Each color necklace identifies whether you are BRCA1 or BRCA2, a previvor, a survivor or a support person.
The conference typically begins on a Friday night with fun activities at the hotel. Saturday and Sunday are filled with lectures, discussion groups, films and even yoga classes. Check out the FORCE website to see the schedule of events from this year’s conference. I guarantee you will be impressed. You can pick and choose what is best suited for you. The meals are great. In between sessions, there are vendors set up in a room. Many are doctors telling you about their practice and the procedure that they use. This was very informative. I highly recommend walking around and asking questions and collecting brochures and information. There are also companies like those that sell implants, so you can actually see and touch them. There are organizations present that support previvors and cancer survivors.
Show and Tell
On the first day of the conference, my mom and I went to use the ladies room. When I came out, I noticed my mom talking to a woman in line and she was touching her breasts. I was a little caught off guard, as many people were standing around. The woman in line became my first dear friend at the conference. She told me about her surgery, she had a mastectomy and reconstruction. She told me, “I can show you my breasts later.” “Come to the show and tell tonight, “she said. I had heard about the show and tell and was skeptical on whether or not I wanted to attend. I knew that women showed you their breasts after mastectomy and reconstruction, and at the time, I didn’t know if I was mentally prepared to see that. Surprisingly, it was an eye opening and bonding experience.
The show and tell took place in a two story suite. On the first floor were tables set up with wine and cheese and chocolate. Women were standing around chatting and everyone was very friendly. A surgeon sat in the back of the room available to answer questions about the type of procedure he specializes in. I learned at the conference that there are many different types of reconstruction. Upstairs, women stood around topless to show off their reconstruction. It was a bit awkward at first but all of the women seemed so at ease that I soon became at ease as well.
I was amazed at how fabulous their breasts looked. I remember commenting to one woman who had the one step procedure, which replaces your breast tissue with implants in one operation, “You had a mastectomy and reconstruction?” She said that she liked her breasts better now than before. This is a comment I heard from many women. Don’t get me wrong, we all agreed that we would rather not have the mutation or the surgery. Many of the women offered to let me feel their breasts. They really looked and felt natural. Besides implants, there are other types of reconstruction that utilize your own body fat. By the end of the evening, I was so glad that I attended the show and tell.
Day 2: Dating
Day 2 is also filled with lectures and discussions. As a single woman, a great discussion that I attended was on dating. How do you decide to tell a date you have the mutation or that you have had a mastectomy and reconstruction or that you no longer have ovaries? The discussion was an open forum and we all shared our thought and ideas. This was another way to meet others like you in similar situations. Most of us agreed that this would be something that we would not share when we first met someone, but with someone we had gained trust and begun a relationship with.
One on one time
If you want to spend face to face time with doctors, attend the” ask the experts” round table. There are tables set up and numbered. You are provided with a list of who is seated at each table. This is a great way to spend time with specific doctors and learn more about the type of procedure they specialize in. There are also researchers that are available to answer questions. This time was very valuable to learn more about the different procedures from the doctors themselves. I also learned about a great book called “The Breast Reconstruction Guidebook” by Kathy Steligo, which discusses the different types of reconstruction options. I really was amazed at how advanced the reconstruction is today.
What I gained
Besides a vast amount of knowledge that I took away from the conference about statistics, procedures, up and coming research and the support that FORCE provides, I learned and gained a lot from the other women that I met. Many had been where I was and had a mastectomy and reconstruction, as well as an oophorectomy (removal of their ovaries). From these women I received firsthand accounts of their experiences and a great deal of empathy. I made lifelong friendships with these women that I will cherish forever.
- National nonprofit organization devoted to hereditary breast and ovarian cancer - FORCE - Facing Our
A nonprofit organization for women whose family history and genetic status puts them at high risk for ovarian cancer and/or breast cancer, and for families in which a BRCA mutation may be present.