Living with Metastatic Breast Cancer: Become Your Own Advocate
By Jen Campisano, founder of Booby and the Beast
It was the summer of 2011 and things were going well. I had landed a job I was happy with, and my husband, Chris, had been offered a job as an assistant professor at Arizona State University. After three years of marriage and welcoming our son, Quinn, into the world we were exhausted, but things felt like they were finally falling into place.
That all changed when I noticed a lump in my breast. At first, I didn’t think much of it and neither did my doctor. During a visit to my late mother-in-law’s house in California, I confided in her that the lump on my breast was not responding to the hot compresses that my doctor had recommended for what he believed might have been blocked milk ducts from nursing Quinn. She encouraged me to get a second opinion and I did. Over the next few weeks, I went from thinking the lump was nothing to learning that I had an aggressive form of breast cancer – a tumor that was now the size of a walnut. Tests in those early weeks showed that the cancer was metastatic.
I didn’t know much about breast cancer, let along metastatic breast cancer (MBC), at the time and assumed that I would be “done” with this chapter in my life once I had completed treatment. My husband and I were stunned to learn in the spring of 2012 that the cancer had spread to other places in my body, and that I would be in treatment for the rest of my life. I also learned that MBC claims the lives of 40,000 Americans each year, a number I found daunting.
To help cope with the fears and complex emotions I was feeling, I started a blog. But, I credit a good friend of mine with nudging me to share my experience as a way to help others who are on the same journey. The blog has connected me with a remarkable community and has provided me with a platform to help tell the MBC story to a broader audience than I ever could have imagined. This National Breast Cancer Awareness Month, I want to take this opportunity to urge those living with this disease to do two things: get educated and advocate for yourself.
Educate yourself and take advantage of resources available to you
Education is so important! We live in a “soundbite society,” in which we seem to gravitate towards light and happy endings. This can be an additional challenge when facing a disease as complex as MBC. It is precisely for this reason, however, that education is so important.
The more you educate yourself – whether it’s learning about your hormone receptor status, conducting research into potential clinical trials, or seeking information about other options available to you – the better equipped you are to communicate and meet your needs. I encourage people living with MBC to make informed treatment decisions and take advantage of resources that can improve quality of life.
Advocate for yourself: you are the priority
It is also important to create a strong partnership with your entire treatment team. One of the things I love most about my treatment team is that they are so responsive. Whether it’s taking the time to discuss my concerns or having me come into the office to get extra fluids when I’m not feeling well, my team has always made time for me. I believe this type of responsiveness and partnership has been a crucial factor in why I am doing so well in spite of this devastatingly scary disease.
My message to those who do not have a strong partnership with their treatment team is to not be afraid to create a team you can trust and have open dialogue with! When your life is on the line, you have to push until you get answers to whatever it is that is troubling you, and if something doesn’t seem right, I encourage you to seek out other professionals until you are comfortable. I am so glad I took the time to create a treatment team whom I felt comfortable with.
I have had no evidence of disease (NED) for 23 months and continue to go receive treatment every three weeks. In spite of the reality that I will remain in treatment for the rest of my life – I count my blessings every day.
Jen Campisano writes about her experiences with metastatic breast cancer and motherhood on her blog, Booby and the Beast. She lives in Phoenix, Arizona with her husband, Chris, and son, Quinn.