Two years ago, Jennifer Caulford was diagnosed with stage 0 breast cancer. She had to advocate to get the treatment she wanted, which led to a second breast cancer diagnosis. Genetic testing also revealed she has the CHEK2 gene mutation. This is her story in her own words.
In October 2022, I was diagnosed with stage 0 breast cancer. Doctors assured me a simple lumpectomy would take care of it. But it didn’t. They didn’t get “clean margins.”
My doctors decided the next plan was another lumpectomy followed by weeks of daily radiation. The idea of radiation so close to my heart and the potential side effects terrified me. And what if the second surgery still didn’t get everything? I felt overwhelmed, unheard and pushed into decisions I wasn’t comfortable with. So, I hit pause.
Testing Positive for the CHEK2 Gene Mutation
I have five cousins who have tested positive for a BRCA inherited gene mutation, so I took control and had genetic testing done on my own. That’s when I found out I’m CHEK2 positive. This mutation significantly increases the risk for several cancers, including breast, prostate, colon and thyroid. It was shocking but suddenly things made more sense — I had already survived thyroid cancer and now I had breast cancer.
Getting a Second Opinion
With this new information, I felt strongly that a double mastectomy was the best choice for me. My doctor disagreed and even reacted rudely when I mentioned getting a second opinion.
My doctor’s reaction made me seek out a second opinion, and I found an incredible surgeon who truly listened and supported my decision. Just three months before turning 50, I said goodbye to my D cups and hello to AA cups. This was the best decision ever.
Pathology Results Reveal Stage 2 Breast Cancer
A few weeks after surgery, my surgeon called. Pathology had uncovered a hidden stage 2 tumor that hadn’t shown up on any scans. She told me that choosing the double mastectomy was the best decision I could’ve made. That call gave me chills. We began tailoring a treatment plan from there.
Your Voice Matters
Now, I look different and every day I carry visible and invisible reminders of the journey I’m on. I’m still in treatment. Every four weeks, I get a capsule injection in my abdomen to release meds throughout the month and I take a daily pill.
Two years down…and hopefully just four more to go. It’s a lot, but if I stick to the plan, according to my doctor, I have a 97% chance of staying cancer-free. And *those* are odds I can live with.
The moral of my story? Trust your instincts. Advocate for yourself. Your voice matters — especially when it comes to your health.
Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their health care provider with specific questions or concerns about their treatment.
