For Patients with Lobular Breast Cancer
The information and materials provided here were compiled for use by individuals with invasive lobular carcinoma (ILC), also known as lobular breast cancer, and their loved ones.
The Lobular Breast Cancer Alliance (LBCA) does not attempt to duplicate most current information available on other websites about general breast cancer. What LBCA provides here is specific information, including graphics and downloadable pdfs, about ILC and ILC treatment, and sample questions specific to lobular breast cancer that patients may wish to discuss with their care teams.
LBCA strives to keep this site current as new information and research findings become available.
ILC is a distinct histologic subtype of breast cancer
ILC was not officially understood to be the distinct breast cancer subtype that it is until 2015. It is also not a rare cancer. In fact, ILC is the second most common breast cancer histologic subtype and the sixth most frequently diagnosed cancer in women in the US. Around 44,000 women each year are diagnosed. Unfortunately, it is still not well understood.
One of the most unique features of most ILC tumors is the absence of the protein E-cadherin and the fact that ILC tumors do not usually form a lump. This makes it much harder to detect with screening, advanced imaging, and self-exams. It is important to know the signs of ILC and report breast changes to your health care provider.
Frequently Asked Questions (FAQs)
A download is available of Frequently Asked Questions and answers about ILC characteristics and treatment options. It is for informational and educational purposes only and can be used to enable patients to have informed discussions with their health care providers. LBCA does not provide clinical advice or make referrals. This information is not meant to replace the advice and care patients receive from their health care provider.
There are various organizations that provide direct support to individuals with all types of breast cancer. They may also provide other services and information. Support provided by these organizations may include peer counseling, helplines, and support groups. In some cases, callers may be able to ask for and find that the organization has trained peer counselors with lobular breast cancer. Click here to learn more.
ILC Fact Sheet
As noted, ILC is the sixth most diagnosed cancer of women in the US. Recent research has highlighted opportunities to better understand this disease and improve the diagnosis, treatment and follow-up care for thousands of patients with ILC. Download the fact sheet here.
ILC Publications Library
LBCA hosts a library of the most important and current published ILC research, and updates it regularly.
Patients who are in cancer treatment, have undergone treatment, or are living with lobular breast cancer can help advance the understanding of ILC by participating in clinical trials and research studies. Learn more here.
We have an array of educational videos and podcasts, a collection of taped interviews with individuals or panels of clinicians or researchers on ILC- focused topics from past conferences, and videos on ILC Topics being discussed by our Scientific Advisory Board members and other ILC expert researchers available for viewing. You can review these trusted resources whenever is most convenient for you.
Information Specifically for Patients with Metastatic ILC
In addition to the information above, patients with metastatic lobular breast cancer and others with ILC that seek to understand where ILC tumors might metastasize may find the information below regarding metastatic ILC helpful.
Signs and Symptoms of Metastatic Breast Cancer
If you have been diagnosed with lobular breast cancer, it’s important to know where lobular breast cancer can metastasize (spread) and the symptoms. Like patients with invasive ductal carcinoma (IDC), patients with ILC experience metastases to the bones, lungs, brain, and liver.
However, ILC can also spread to unusual sites such as the ovaries, reproductive tract and the stomach and GI tract. ILC can metastasize many years after diagnosis. Report unusual symptoms you may experience in these areas to your oncologist.
Metastatic Trial Search is an easy-to-use clinical trial matching service developed specifically to meet the needs of people with advanced and metastatic breast cancer. With this service you can match to trials based on breast cancer subtype, including lobular; sites of lobular-specific metastases, biomarkers, and more. Users can view important trial information in a patient-friendly format. Metastatic Trial Search is designed to be used by patients, caregivers, navigators and healthcare providers.
Here All Year Campaign
The Lobular Breast Cancer Alliance partnered with the Metastatic Breast Cancer Alliance for its Here All Year Campaign in July, 2021. Topics included the potential for ILC to metastasize to unusual sites, the imaging challenges of metastatic ILC, existing clinical trials and the challenges that exist in studying the disease, and how biomarkers and inherited mutations can help in the targeting of treatments for individuals with metastatic ILC.
As mentioned above, there are educational videos and podcasts, ILC- focused topics from past conferences, and videos on ILC Topics being discussed by our Scientific Advisory Board members and other ILC expert researchers available for viewing. The videos below may be helpful to those with metastatic lobular breast cancer.