The Need for Vigilance in Lobular Breast Cancer Monitoring

Having dealt with difficult-to-diagnose breast cancer herself, Patricia Jakel, MN, RN, AOCN, is all too familiar with the need for vigilant monitoring, even when that goes beyond what is recommended.

Jakel, an oncology nurse consultant and Oncology Nursing News’ co-editor in chief, shared in an interview at the 43rd Annual Miami Breast Cancer Conference that detecting her lobular breast cancer recurrence took her physician calling for MRI and ctDNA testing outside of what was recommended in Jakel’s stage of survivorship. Both her original and recurrence diagnoses were detected after recent mammograms and ultrasounds, all of which came with negative results.

Invasive lobular carcinoma (ILC) is a rarer type of breast cancer than invasive ductal carcinoma (IDC), affecting only 1 in 10 patients with breast cancer vs IDC’s 8 in 10. ILC, which occurs in lobules rather than milk ducts, is less detectable on traditional breast cancer screenings, and patients with ILC are more likely to be affected in both breasts at the time of diagnosis.

Jakel, an advocacy board member for the Lobular Breast Cancer Alliance, supports advocacy groups such as that one as well as the Susan G. Komen Breast Cancer Foundation, which provide education materials and support to patients with cancer.

Transcript

I’m an advocate for doing as much as possible, even if you don’t have the guidelines. My doctor’s a bit of a cowgirl: She is very fierce about making sure she uses all the tools in her toolbox. She did ctDNA for me, even though it’s not indicated in survivorship when there’s no evidence of disease. Mine came up positive, and then my MRI came up positive. Had she not done that, I would not be as early stage in my recurrence as I might have been had someone else said, “No, we’re not going to do that. There’s no indication for that.”

Because of that, I’m out there advocating for patients, especially with lobular breast cancer. Lobular breast cancer is very different than invasive ductal carcinoma. The biology is different. Both my original diagnosis and my recurrence were diagnosed 5 months after both a negative mammogram and a negative ultrasound. But when I ended up with my doctor at UCSD, she said, “Oh, no, no. We need to do more. You have a different type of breast cancer, and we need to do more.”

That’s when she did the ctDNA and the MRI instead of mammography and found that I had a recurrence. She will tell you she was very surprised. I, of course, was also shocked and surprised. But we need to be our own advocates, and it’s a lot of work to be your own advocate because you have to stay current and up to date. I support advocacy breast cancer organizations such as the Lobular Breast Cancer Alliance and Susan G. Komen Breast Cancer Foundation. They’re a great source of advocacy and also a great source of information.

This transcript has been edited for clarity and conciseness.

Reference

Invasive Breast Cancer (IDC/ILC). American Cancer Society. Updated November 19, 2021. Accessed March 9, 2026. https://www.cancer.org/cancer/types/breast-cancer/about/types-of-breast-cancer/invasive-breast-cancer.html