Voices on Cancer is an award-winning Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Claire Thevenot is an Oncology Certified Registered Nurse (OCN) and a stage IV breast cancer survivor of over 7 and a half years. She is also a Board Certified Patient Advocate (BCPA) and has her own private advocacy practice guiding patients through the complicated health care system to access quality health care and attain peace of mind. Claire enjoys walking, reading, cooking with her husband, and spending time with her family and naughty cat, Cheese. View Claire’s disclosures.
My advocacy story
As a registered nurse working with people with cancer, I always felt a tenderness for the people I cared for and their families. I could sympathize from up close with what they were going through.
But despite being surrounded by cancer, I never once worried about being diagnosed with cancer myself. Not only did I come from a large family with very few instances of the disease, but it also just seemed like something that happened to other people. Working in the cancer world somehow made me feel immune to it.
But then, in 2013, I was diagnosed with stage IV (4) metastatic breast cancer. Luckily for me, I was knowledgeable in the health care system and had experience in cancer. I went from noticing something suspicious in my breast in the morning, to an appointment with my gynecologist, to a 3D mammogram with ultrasound, and ultimately to a biopsy all within 1 day. By the time I had left the breast care center at 4:30 p.m. that day, the radiologist had already told me she was sure it was cancer. I appreciated her honesty. I cried so hard my friend barely understood me when I called to have her come get me.
After my long, cathartic cry, I started to go into planning mode. I’m someone who does better if I’m armed with information and have a plan. Thanks to my job, I already knew what to expect, which questions to ask, and what doctors I needed to reach out to. That knowledge gave me a lot of comfort.
The day after the biopsy, the pathology report confirmed my diagnosis. Again, my job and contacts allowed me to move quickly, so I already had an appointment lined up with an oncologist colleague and a breast surgeon. Armed with a plan, I was still scared, but I felt empowered to face what was to come.
There really are no words to describe the level of fear and grief I felt when I learned I had cancer. I was devastated and believed my life was over. I still had kids at home who needed me, and I worried about what would happen to them. I was newly divorced and thought no one would love me if they knew I had stage IV cancer. I had things I wanted to accomplish and adventures I had yet to take. Cancer made those things seem like they would never be possible.
Before my diagnosis, I was an active, otherwise healthy 47-year-old working in education and training at an oncology physician’s office, and I never missed my regular mammograms. In fact, the last mammogram I had was just 4 months before my diagnosis, but dense breast tissue had made my cancer harder to detect.
The night I was diagnosed, 2 dear friends brought over wine and chocolate. We sat in my bed eating and drinking, and the 3 of us cried together. That moment was 1 of the bright spots in my diagnosis and a memory that still makes me choke up. And the beauty is, I have found many more “silver linings” in the past 7 and a half years. Acquaintances and colleagues I felt I barely knew reached out to me with kind words, expressing how much they cared about me. I met a wonderful man who would not only love me despite the cancer, but who would admire me even more for how I coped with the diagnosis.
My cancer responded well to hormone therapy, and I continued to feel well after my diagnosis. I even ran a 10-mile race 2 months later! Over the months and years, friends would reach out to me and ask me if I could talk to family members or other friends who were recently diagnosed with cancer. I was eager to help and began providing information, attending appointments, and offering support and guidance to others with cancer. Thus, my new career and calling evolved.
Becoming a full-time patient advocate
My personal and professional experiences have converged in a way that allows me to help others who are struggling with cancer. I had been wanting to start my own advocacy practice for a while, but I needed to wait until the time was right. When I got into a financial position where I could afford to leave my job, I took the leap. My husband was incredibly supportive and had a lot of faith in me, so he encouraged me to make the change. I left my full-time job in 2020 just before the pandemic hit and started my private patient advocacy business.
Today, I am a Board Certified Patient Advocate (BCPA). This certification for patient advocacy is fairly new, and it currently involves taking and passing a comprehensive exam. The exam covers ethics, best practices, insurance and billing issues, and other topics. It was important to me to become certified because I felt it indicated a certain level of professionalism and adherence to ethical standards.
As a patient advocate, I work with people with cancer and their families, as well as with clients facing other health care issues like chronic pain and difficult-to-diagnose conditions and those who are uncertain about what steps to take to get their needs met. I help people from diagnosis to treatment in all facets of their care.
For example, I had a client recently diagnosed with melanoma. I helped him and his wife understand the pathology report and what the next steps would be. I researched medical oncologists specializing in melanoma and participated in the first couple of appointments over the phone, to make sure they understood what the oncologist was saying and that they got their questions answered. After the appointment, I sent them a detailed report of what had been discussed. When a treatment plan was decided on, I made sure they knew what to expect regarding side effects and supportive care. Now, the client is a few months into treatment, so I continue to check in to see if he has any questions or needs anything. His cancer is advanced, and we talk about him eventually considering going on a clinical trial. When that time comes, I will research available studies and help support the application process for any that might be suitable.
For those interested in becoming a Board Certified Patient Advocate, the best way to prepare for certification would be to take a comprehensive review course, which is offered through the Care Excellence Institute. I would also recommend that anyone interested in starting their own advocacy practice join 1 or more of the 3 professional organizations for patient advocacy, which include the Alliance of Professional Health Advocates, the National Association of Healthcare Advocacy Consultants, and HealthAdvocateX. These organizations are a great way to learn about advocacy and to connect with others in the field. They also have a lot of resources to help you start to build your business and prepare for the Board Certified Patient Advocate exam.
My experience with cancer has been made easier because I know how to navigate the health care system, I understand medical language, and I know which resources are available to help me get the best possible care. As an advocate, I bring that same experience to help make my clients’ experiences smoother as well. I really understand what they are going through because I have been there, and they trust me because of it.
I consider cancer a serious illness, yet it’s something I barely think about on most days. For me, it is an afterthought in a life I am living well, and most importantly, it brought me to where I am now. Being a patient advocate has been very personally rewarding and allows me to make a living doing what I love: helping others.