Consumer Involvement
BCRP Consumer Reviewer
In April 2013, I heard the four words that no woman ever wants to hear, �You have breast cancer.� This diagnosis was made after my routine mammogram indicated several suspicious areas. After a series of biopsies, MRIs and other radiological tests, I was scheduled for surgery on May 1, a bilateral mastectomy with immediate reconstruction. If there was a saving grace to all of this, I was going to have an areola sparing procedure. Between the diagnosis and surgery date, I tried to educate myself on exactly what and why all of this was happening. I told my husband before I entered the OR that my first question after waking up was going to be about how many lymph nodes were removed during the Sentinel Node procedure.
The week that followed surgery wasn�t easy with four drains attached to my chest. Getting out of bed and taking a simple shower were difficult processes. I couldn�t raise my arms, so dressing and finding something to wear wasn�t easy either. At the end of the week, the biopsy reports were available. I met with my surgical team. I had Stage II-B Breast Cancer (Invasive Ductal Carcinoma) because of the size and multiple locations of the tumors in my right breast. Only one lymph node was infiltrated and that was diagnosed as barely a micro-met. There was some question as to the need for radiation so I sought an outside second opinion to validate my decision not to have this. After several additional weeks the Oncotype DX� testing was completed and my scores were in the very low range, so I�d also escaped chemotherapy. I was extremely grateful and thankful. I had a surgical cure! I was indeed now a Breast Cancer Survivor!
As a Naval Officer, I had been stationed on Okinawa several times. They had these dragon boat races every May and I really, REALLY wanted to try, but the event and practices never quite fit my schedule or calendar. Fast forward to Summer 2014 when I was well healed and had had the reconstruction exchange implant surgery. I remembered while in the waiting room of the Breast Care Center, seeing information about rowing and paddling for breast cancer survivors (BCS). �Wow,� I thought, �This is something for me! This was my chance to finally find out what it feels like to be in a dragon boat!� I tried it! I Loved it! I was Hooked! By August 2014, I was a member of GoPink!DC, the Capital�s premier and only BCS Dragon Boat Team! During that month, I also participated in my first Festival! In October 2014, our team along with over 100 other BCS teams from eight different countries attended the International Breast Cancer Paddlers� Commission�s participatory Dragon Boat Festival in Sarasota, Florida! The next IBCPC festival is in July 2018 in Florence, Italy!
Paddling has brought many good things into my life! I have met extraordinary women in and around my neighborhood, the East coast, Puerto Rico, Toronto and Spain. It�s a great way to exercise and have fun all at the same time!
During October, I often participate in BC Awareness events. During these outreach events, I present information about Dragon Boating and GoPink!DC to encourage other women to try my sport. It was at an event at Walter Reed National Military Medical Center, my hospital, that I was approached about the possibility of being a Consumer Reviewer on the Congressionally Directed Medical Research Program for Breast Cancer. What a Great way to give back! Out of something not so good was coming this wonderful opportunity to help other women! What an Honor to help change the course of Breast Cancer!
Now, having had the privilege to participate on two panels, I am in awe and amazed by what I read in these research grant applications and the discussions that occur alongside highly skilled and educated medical professionals and scientists! A Consumer Reviewer adds a special perspective to the panel, that is not normally recognized or thought about by those working behind the scenes and maybe not involved in direct care. Some scientists have never had the opportunity to speak with a breast cancer survivor. I am extremely grateful for the work that they do and for the other reviewers like me, that may have influenced in some way - large or small - my treatment plan.
Last updated Tuesday, November 12, 2024