Ann's Story: What I Didn't Know About Lobular Cancer

Like many women with invasive lobular breast cancer, I was initially diagnosed and treated without particular emphasis on the invasive sub-type of breast cancer, and was not advised about how and where it might recur (except in the other breast). I was diagnosed with two fairly large, ER-positive, HER2-negative masses in my right breast (which were not palpable and had not shown on mammograms) in February 2017; cancer was found in 17 lymph nodes. I had a right mastectomy, lymph node dissection, and reconstruction, followed by AC-T chemotherapy, radiation, and 5 years of aromatase inhibitor. I was treated at Memorial Sloan Kettering, and was happy to accept the positive spin of my surgeon - that this was slow-growing, estrogen-fed, non-aggressive breast cancer and that it had been taken care of. I never worried about recurrence.

In 2022, I was treated for anemia and worsening GERD. Colonoscopy and endoscopy were negative, but the hematologist ran breast cancer antigen tests, which were elevated. He was sure that breast cancer had recurred, but two PET scans in fall 2022 and spring 2023 were both negative. By May and June 2023, intestinal pain was severe, I had lost 10 pounds, and was experiencing periodic vomiting and alternating constipation and diarrhea. An IBS diet wasn't helpful: an urgent care X-ray showed lots of gas but no cause; and a second gastroenterologist also didn't ask about my breast cancer history, but did eventually order a CAT scan. While waiting for insurance approval of the scan, at my employer's urging, I walked myself into local emergency room, where CAT scan showed complete intestinal blockage. I had immediate emergency surgery; the colon cancer surgeon thought it was probably breast cancer recurrence. He performed an ileostomy because there was no other option; the peritoneal and intestinal metastasis was so profuse and embedded. I was extremely angry that no one had mentioned that 15% of invasive lobular metastasis occurs in the abdomen - or that invasive lobular metastasis, especially in the abdomen, might not show up in a PET scan. After nine months of treatment, I was able to have the ileostomy reversed, although this was counter to the recommendation of the MSK colon surgeon; I returned to the ileostomy surgeon at NYU who was much more positive, and it has been a success, allowing me much more freedom to travel, etc., over the last 10 months.

Finding the invasive lobular group at Breastcancer.org has been very helpful; since so many women have had similar experiences, and several are on similar treatment regimens.