As this year's layperson recipient for the Stephen H. Goldman Keystone Award, I was asked by Doctors magazine of Sarasota to write an article for their April publication defining, "What Does it Mean to be a Breast Investigator?"
I was happy to do so as it is a question I get a lot....sometimes verbalized, sometimes communicated with looks of wonder.
I usually begin by expressing that "It is what every person needs to be, but what I wish No person ever Had to be."
For Early Detection
I realized at the age of 35 the importance of being a Breast Investigator. I now know there are three steps involved in the early detection of breast cancer. When I was 35 years old, 5 years before standard of care recommends a woman begin mammography screening for breast cancer, I discovered a density difference between my two breasts (breast self-awareness.) Knowing that I was young, healthy, had no family history, and didn't feel a lump, I decided not to worry too much about it and I chose to monitor it.
When it came time for my annual GYN exam, I brought it to the attention of my doctor, who then proceeded to give me a clinical exam. Although she felt the difference and didn't think it was anything to worry about, she suggested that since I was 35 it would be a good idea to get a baseline mammogram. I agreed, but as the mother of two young children that script changed location on kitchen counter multiple times before I got around to making the appointment. It took noticing that my nipple was changing position to motivate me to move that mammogram to the top of my priority list.
It was Friday, February 13, 2004 when I had my first and last mammogram. At the beginning of the following week, I got the call that my mammogram was suspicious and I needed to see a surgeon. The next thing I remember is being in the surgeon's office having a biopsy, being told I have breast cancer and having my first appointment with an oncologist scheduled. Yes, it happens that fast.
As a Cancer Patient
Over the next few weeks, I was introduced to a whole new world of scans, tests, treatment plans, and worry. I was in such shock from it all... I just wanted to be told where to go and what to do to get this cancer out of my body and get back to my normal life. Lucky for me, my husband was my online, research, and questions advocate. He educated himself on this disease and was able to protect me from the scarier side of the statistics. He researched new and upcoming drugs and because of that, he worked with my oncologist to get my insurance to approve a drug that was still in trial at the time- but within the year would become standard treatment for my type of cancer.
I didn't know anyone who had gone through cancer- especially at my age. So I began my own search for resources. One particularly vivid memory is the difficulty I had in finding an age-appropriate wig. It was devastating to lose my hair, a situation made especially painful by not knowing where to turn for acceptable options. In other areas, I was fortunate to have insurance and a support team to help care for my kids during treatment and bring my family meals. But what happens when someone does not have a local support system? They often struggle alone and don't know where to begin to look for help.
Building a Care team
My medical team was fantastic and directed me to other doctors and specialists. But talking with others over the years, I realized we don't always connect with the members of our team and it is important to seek a second opinion if you don't have a good match.
A good medical team was all I thought I needed then. Now I know there is much more available to help a cancer patient through treatment, such as acupuncture, nutrition, emotional support, physical therapy, cancer coaches, patient advocates, nurse navigators, and more.
With cancer treatment comes a slew of questions, before, during and after. How do you prepare yourself for what is to come? When you experience side effects, how do you address them in the most efficient, effective, and safe way? How do you deal with long-term effects of treatment such as chemo-brain and lymphedema? Access to reliable resources can make a huge, positive difference during the active treatment process.
Finding a New Normal
One of the most difficult periods of my personal cancer journey was the period after treatment ended. I was no longer in the Fight mode and I was not under the watchful eyes of my doctors. I found that my support team was moving on since my battle was over- but really it was just beginning. I was left alone with my thoughts and fears of recurrence. My idea of who I was and what my future was going to be needed to be redefined. There was no going back to life before cancer- I just wasn't sure what the new life looked like.
Finding Peer Support
Support of family and friends is crucial to wellness and recovery, but it was when I connected with others who had been through the cancer journey and shared similar experiences, that I was able to release a lot of the emotions and anxiety that had been building up inside of me. Knowing others have these same thoughts, fears, and worries made me feel that I was not alone and it helped to heal the Invisible scars. This support can be found through groups, classes, one on one peer support, or online chat groups.
Thriving after Cancer
As life moved on I found ways to take my cancer experience and turn it into something good. I formed close friendships with many I might not have had an opportunity to meet otherwise. I took time to evaluate the important things in life and make healthy changes, being certain I took better care of myself through a focus on total mind, body and spirit wellness.
Advocating for others "Paying it Forward"
My inner calling has placed me on a path of advocacy after cancer. Helping make another's journey a little easier is what drives me as an advocate. Keeping up with breast cancer research, advancements in treatment for improved patient care, finding and connecting others to local and national resources, discovery and education on lowering the risk of cancer, giving inspiration and a voice to survivorship issues, and advocating for a cure is all part of a day in the life of a Breast Investigator.
Join us in taking the mystery out of breast cancer.