Consumer Involvement
Photos and text used with permission of
Alexis Rhoads
I am a 37 year old mom of three boys, ages 11, 6, and 3, I am a wife of a newly promoted active duty Air Force Master Sergeant, I am a daughter, friend, and a sister. I am also unfortunately a metastatic breast cancer patient. I feel very passionately about advocating for metastatic patients and am so honored to be a part of the Department of Defense (DoD) Breast Cancer Research Program (BCRP). My husband's service has taken our family all over the world. In 2012, while we were stationed in a small very remote town in Australia, I had what doctors believed to be mastitis due to nursing my newborn son. At the time, our boys were ages 7, 3, and a newborn, whose complicated delivery led to a long and difficult recovery for me. When he was three months old, I felt a hard, painful lump in my breast that the local doctor thought was mastitis, but it was not going away despite antibiotic treatments for several months. I was then given a biopsy in February 2013, and it was suspected that we might be dealing with cancer. Our amazing Air Force commander and squadron worked together with commanders back in the US to transport myself and three small children back to our country within 48 hours. My husband's commanders and colleagues were incredibly supportive from the start. They took care of everything from groceries once we landed after 25 hours of flying, making doctor's appointments, getting us somewhere to stay, and coordinating childcare. Once we were home, it was quickly revealed that I had Stage 3 triple negative breast cancer (TNBC). From the time of the initial symptoms to the correct diagnosis, the tumor had grown from a small lump to the size of a baseball.
Since there is no targeted therapy for TNBC, the standard treatments are chemotherapy and radiation. My treatments were extremely difficult for my family, but we were only able to fight through it with the support of our loved ones and extended military family. The statistics for TNBC, an aggressive subtype of breast cancer, are staggering. An estimated one in three women with TNBC will develop metastasis. To try to beat those odds, I underwent a double mastectomy, followed by major breast reconstruction and a lengthy recovery. After a year of treatments, surgeries, no hair, and recovery, I celebrated with a weekend with over 20 close friends in Vegas. We all thought we had it beat.
A few weeks later, in March 2014, I found a skin surface nodule that turned out to be a recurrence. I had surgery to remove it, underwent some preliminary scans, and prepared to start chemo all over again. Before beginning chemo again, my beloved doctor came in with a somber expression and informed me that the scans showed a mass the size of a grapefruit in my abdomen...metastasis. "I'm sorry- I know you have the kids" is all he could say. My initial reaction was instinctive and characteristic of who I am - we would let our faith guide us, and we would fight through it. We had such incredible support from our family and the military; I thought we could beat it again. While shocked, I thought that maybe I could be one of the few that survives. It was as I was saying goodbye to the staff that day, I saw my nurse turned away from me and silently sobbing. That's when it hit me: there is no cure for metastasis. A positive attitude will not change bad luck and bad cells. I am a young mother of three beautiful little boys, and there is no cure for me. I've been on chemo almost the entire time (two years) since being diagnosed with metastasis. I started a Facebook page to keep my family updated on how I'm doing when I was first diagnosed, but over the past couple of years, thousands of people have supported us by following my breast cancer journey. As a TNBC metastatic patient, I am an anomaly because I haven't had a true recurrence again. I have merely had small surface nodules that have been easily removed. I am living my life to the fullest until the next challenge comes our way.
Throughout the entire ordeal, the military support system has been amazing. I fully appreciate the fact that if my husband was in any other profession, we would likely not be able to have such a great family life. When I was being treated in Colorado, my husband's commander told him he needs to stay home with me when I wasn't well and that his assignment was to take care of his family. They have gone out of their way to make it an easier situation for our family. After I was diagnosed with metastatic disease, the Air Force immediately accommodated our needs again and moved us to San Antonio on a humanitarian assignment, to be closer to our family in Dallas/Fort Worth. We are so thankful for our country, the amazing medical care, and how the military treats us as family. Unfortunately, this is not something every Stage 4 patient can say. Other women I know have had their lives turned upside down, losing jobs, losing cars, homes, struggling financially, and putting an enormous strain on their families. My husband and I are extremely grateful for the military's support. What my family has experienced is a real testament to how the military can take action and do something when there's a problem with one of their own to be solved.
I know that was the DoD's same approach when the BCRP was initiated in 1993, and it continues until today. Breast cancer patients are the foundation on which this program was built, so I was ecstatic to be chosen to serve as a consumer reviewer this year. Together with the help of my husband, we started a group called Warriors 4 Warriors that provides support and companionship for folks in the community as they undergo cancer therapy. Many are older Veterans who were at treatment for hours with no companion- they just need someone to talk to to pass the time. We can do something so small as to sit and talk with patients fighting this awful battle, and help one person have a better day. We are surprised at the amount of people that wanted to help, and our foundation has grown to a multi-state endeavor. I am also active in support and advocacy groups for women with Stage 4 metastatic breast cancer online. We feel invisible in the sea of pink ribbons and feel-good awareness. The public is aware of breast cancer, but they are not aware that the millions raised over the years have had zero impact on saving lives. In the metastasis community, we are angry because it seems no one knows the truth -- 30% of those diagnosed with early stage breast cancer will progress to Stage IV. We still lose 40,000 people a year to breast cancer alone. Metastasis is what kills people with cancer. We need to stop it. However, I was blown away that EVERY SINGLE proposal I reviewed during my role as a BCRP consumer reviewer mentioned metastatic disease. I've never been so relieved. We are not forgotten. The people who can do something about it, the scientists and doctors, are working on saving us. They are fighting to save me. They see me. I shared this with my Stage 4 friends, some of whom are in hospice. We all felt joy that the people who can do something are noticing US, it's not just pink ribbons. I was so very inspired by my experience as a consumer reviewer and want to express the impact it had on not only me, but every other cancer advocate that I spoke with.
Beyond my personal medical care provided by the military, it means so much to me that the DoD is also providing for military families by funding such important research on breast cancer and metastasis. I know that the program has resulted in current treatments like Herceptin, and there are many others in the pipeline. Maybe one day, through the research funded by the DoD, more lives will be saved from this deadly disease. Maybe one of those saved will be me? I'm hoping to be a miracle by making it to 5 years with no active disease. I am well aware that the research might not save me, but that is not going to stop me from fighting.
Photos and text used with permission of
Alexis Rhoads
Last updated Tuesday, November 12, 2024