When I first went in for my diagnostic mammogram and biopsy, the radiologist already suspected something was wrong. The nurse navigator asked me if I had a surgeon and team ready. Thinking back to that conversation still feels like a gut punch—you’re never really prepared to hear something like that. At the time, I was already talking with Lauren, who shared the information for her breast surgeon, oncologist, and plastic surgeon.
Having breast cancer is not a "one and done" experience. You don’t just have surgery and get cured. It’s a journey, and you need to feel comfortable with your medical team because they will be with you for many years. From the beginning, I didn’t click with the medical oncologist (MO) we shared. There were small things that didn’t feel right, and even Stephen had concerns. However, I adored her nurse—she was so sweet, upbeat, and positive, and I’ll miss her.
Since my breast cancer is estrogen-positive, it requires a hormone blocker to stop its growth. There are two types: aromatase inhibitors (AIs) and Tamoxifen. For my type of breast cancer, research shows that AIs are more effective for postmenopausal women. My local MO initially prescribed Tamoxifen for two reasons: she believed I wasn’t in menopause and felt the side effects were easier. I immediately told her I wasn’t taking the hormone blocker for its side effects—I was taking it to lessen the chance of recurrence.
My MO seemed puzzled, as other women my age were in menopause, yet my lab work suggested otherwise. Twice, she ordered blood work that showed higher-than-normal estrogen levels for a postmenopausal woman. At 55 years old, having had a partial hysterectomy at 36, I was pretty sure I was in menopause. I reached out to my gynecologist, who explained that my MO was ordering the wrong tests. Instead of measuring total estrogen, which fluctuates, she needed to check estradiol levels to determine menopause status. My gynecologist also noted that having a hysterectomy at a young age typically induces earlier menopause.
At my next appointment, I requested the estradiol test. The results confirmed I was in menopause. She then prescribed Letrozole, an AI, and I stopped taking Tamoxifen. This was a significant relief for me, as I wanted the treatment that would best combat my cancer.
In early September, I contacted MD Anderson to set up an appointment with a specialist in invasive lobular carcinoma (ILC). Initially, I sought a second opinion because ILC is less common than invasive ductal carcinoma (IDC), and I wanted to make sure my local MO was on the right track. MD Anderson scheduled me with Dr. Mouabbi for December 16. Preparing for the trip, I reached out to my brother-in-law, who graciously offered his home for our stay.
After MD Anderson retested my tissue, I learned something new: my pathology didn’t just show ILC. It revealed Invasive Tubulolobular Carcinoma, a rare type of breast cancer, along with IDC, LCIS (Lobular Carcinoma in situ a non-cancerous condition, which has a risk of developing into breast cancer in the future) and Focal DCIS (Focal ductal carcinoma in situ refers to a type of early stage breast cancer but has not spread to surrounding tissue and is non-invasive). Additionally, they found isolated tumor cells (ITCs) in one lymph node. I also have lymphovascular invasion (LVI), which is where cancer cells grow into or move into blood vessels or lymph nodes. While the prognosis for Tubulolobular breast cancer is generally good, the presence of LVI adds complexity to my case. I am grateful that my cancer was caught early and that I have a good prognosis, though the possibility of recurrence will always linger as an unwanted guest in the back of my mind.
The care I received at MD Anderson was a night-and-day difference from my local experience. Their nurse navigator called every two weeks to check on me, offer assistance, and ensure I felt supported. This level of care contrasted sharply with my local navigator, whom I only heard from once. After transferring my care to Dr. Mouabbi, I knew I had made the right decision.
Doctors work for us, not the other way around. They are human and can make mistakes, but it’s essential to advocate for yourself. When something feels off, listen to your instincts. My local MO mistakenly documented that I’d had an oophorectomy (removal of ovaries), which I hadn’t, and downplayed side effects I was experiencing. These errors reaffirmed my decision to transition to MD Anderson.
Looking ahead, I’ll continue seeing Dr. Mouabbi every six months and remain on Letrozole for five years. My next step is an appointment with Dr. Nagel, my breast reconstruction surgeon, to plan phase two of my reconstruction and, hopefully, my final surgery.
Breast cancer is a journey that teaches you resilience and the importance of self-advocacy. Surround yourself with a team you trust and never hesitate to seek second opinions. Your health is worth it.
Much love,
Deandra