Personal Stories, Advocacy
By: Vicky Carr
Advocate in Science and breast cancer survivor
I was diagnosed with stage III triple negative breast cancer (TNBC) in June of 2009. I had been getting regular mammograms, with no suspicious findings. Then, one day while I was blow-drying my hair, I felt a lump.
A scan revealed that I had a 3.8 cm tumor in my left breast, another one nearby nearly that size, and several others (under my arm and deep in my chest), so I opted to have a mastectomy in addition to chemotherapy.
I was really concerned about my cancer returning, so, toward the end of my treatment, I read books about things to do to better your odds of survival. One of my books suggested joining a support group. I was brazen enough to think I wouldn’t need support, but the book said to go, so I did. (Looking back now, the fact that I thought I didn’t need support is just comical.)
It was so valuable to have individuals to talk to who shared my experiences, like transitioning back to work. But, what I really learned was that I was good at helping others. I wanted to do more, and I heard from one of the women in my group that she volunteered on a helpline, talking with women facing TNBC. I knew that was where I could really help people, so I went through the helpline training and loved it. In fact, I’ve been working on it for six years now.
I’ve spoken with lots of women who were facing TNBC, and felt that I was able to help them. But after that first year, I started getting more and more calls from women I’d spoken with before… except this time their cancer had returned, and was metastatic. And it made me mad. Working on the helpline meant I was helping others, yes, but I wanted to get involved in something that made an impact long-term. That’s when I extended my focus to advocacy and clinical trials. I got involved with Project LEAD (of the National Breast Cancer Coalition) and later became a Susan G. Komen Advocate in Science.
I realized I had a lot of friends living with metastatic TNBC who were currently involved in clinical trials. I was surprised to learn that, with the exception of those whose normal treatment center just happened to be associated with an NCI-designated center that does trials, most of my friends found their trial on their own time, doing their own research. I realized that there are a lot of misconceptions about clinical trials, what they are, and who can participate in them, and I became dedicated to changing this, and educating more women and men.
My goal was to share my knowledge with others, but little did I know, it was about to change my own life. I was preparing to present at a local TNBC Day event (which happens annually on March 3rd), and I wanted to share information with attendees about BreastCancerTrials.org – an easy-to-use tool supported by Susan G. Komen that helps patients find clinical trials. I plugged in my own breast cancer information to test out the tool (so I’d be prepared for my presentation), and there it was – a trial I was qualified to join. Not only that, it was a trial I had recently heard about which had been showing unprecedented survival for women with metastatic disease. They were now inviting women with stage III TNBC diagnoses and no clinical evidence of disease (like me) to join as well. I couldn’t believe it.
Of course, I knew by participating in the trial there would be potential benefit to me, but I wanted to do it for all the women I’d ever met or talked to in my time on the helpline – and for every woman who would ever face breast cancer. I sent in my records, and I was accepted! So, I traveled by bus every four weeks (day trip from my home to Weill Cornell Medicine, where the trial was taking place). They’d take my blood, I’d see the doctor, they’d adjust my meds, and then I’d go home. I’m on my last month now, but it’s been really fulfilling to potentially play a role in improving therapy for future patients. Further, the experience has made me an even greater advocate for clinical trials.
It requires a lot of people to push research along, and I was delighted to be a part of the progress, but I know others have reservations. I’ve heard all the typical myths like, “You only go on a trial if there are no other options.” Or, “My doctor hasn’t recommended a trial, and he/she would tell me.” But so many times, health care professionals aren’t communicating about trials, or may just be unaware of what is available. We as patients need to educate ourselves as much as we can. Especially when it comes to TNBC, it’s important to see if you qualify for trials, and not just once other options have failed (as past courses of treatment could impact whether you qualify). There are great treatments only available in clinical trials – especially for those with metastatic TNBC.
I wish I had known then (when I was diagnosed) what I know now about clinical trials. I can’t change the past, but hopefully I can help change the future by educating others. So, please – check out BreastCancerTrials.org. And if you have metastatic breast cancer, check out this new tool on Komen’s website that is specific to metastatic trials. Joining a clinical trial may not be the right decision for everyone, but I hope more will consider it, and learn about the benefits to the patient as well as to women and men who will face this disease in the future.
Return to Blog Home