Patients, researchers and clinicians…
increasing our knowledge of lobular breast cancer
working together to advance diagnosis, treatment and follow-up care for patients

LBCA advocates for ILC research and educates about lobular breast disease

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About Lobular Breast Cancer

Invasive lobular breast cancer (ILC) is the sixth most frequently diagnosed cancer of women in the US with 39,000 new patients diagnosed each year.  

Research indicates that ILC is a unique histological subtype of breast cancer with distinct biological and behavioral differences. It’s time to advance research and refine treatments for patients with lobular breast disease.

HELP US REACH OUR GOALS

Learn about Research Advocacy

A research advocate has an interest in the science behind breast cancer research.  Research advocates help breast cancer research reflect patient needs.

Share Information about ILC

Advocates and allies can raise awareness about lobular breast cancer in your local cancer community and educate others about the disease.

Advocacy Opportunities

Contact LBCA to find out about advocacy opportunities such as participating in events and conferences, sharing information at your local cancer center or organization, hosting an event … or share your ideas.

Fundraise or Donate

Tax-deductible donations will fund LBCA’s work to advance research, build partnerships and educate about Lobular Breast Cancer.

  • Did you know … Patients with ILC can find it difficult to learn about their disease

    "I will continue to follow the Lobular Breast Cancer Alliance ... The information has been critical to my journey. My go-to place over the past year."

    LBCA website subscriber, early-stage ILC patient

  • Did you know … Lobular Breast Cancer can recur late and spread to the abdomen, ovaries and GI tract

    "After treatment for advanced bilateral ILC 20 years ago, I knew I had high risk for recurrence. Oncologists wisely kept me on aromatase inhibitors to suppress estrogen. Increasing irritable-bowel GI symptoms sent me to GI doc to no avail, and pelvic ultrasounds by GYN docs saw nothing. Finally an incidental scan showed masses surrounding my ovaries. I was never warned ILC "likes" abdominal tissues."

    Washington metastatic ILC patient

  • Did you know … Lobular breast cancer is the sixth most frequently diagnosed cancer of women

    "More than 39,000 patients will be diagnosed with ILC in 2018 in the US. It's time to bring lobular breast cancer out of the shadows and do the research to better understand this disease and how to care for the patients living with ILC."

    Washington ILC patient advocate

  • Did you know … ILC can go unseen on mammograms resulting in diagnosis at a more advanced stage.

    "My tumor was 7.3 cm (approximately 3 inches in diameter). It grew so slowly that I failed to realize it was there, despite self breast exams. It was not visible on mammogram or ultrasound. Ultimately it was seen on MRI. I had a modified radical mastectomy, because lobular carcinoma is less responsive to neoadjuvant chemotherapy."

    Pittsburgh ILC Patient

  • Did you know … Symptoms of ILC can be thickening or swelling, skin texture or nipple changes or breast pain.

    “My lobular cancer was not a lump. My cancer was a thickening that I initially thought was a bruise from a fall. Even my primary doctor ignored it. But it didn’t go away and I finally had it biopsied. Stage IIA Pleomorphic ILC.”

    California ILC patient

Clinical Trials and Studies

  • Research Priorities identified by Lobular Breast Cancer patient advocates...

    02 January, 2019

  • The ROLO trial is a targeted therapy clinical trial in the United Kingdom for patients with advanced or metastatic lobular breast cancer. Name of the trial: ROLO– A phase 2 study for advanced lo...

    11 September, 2018

  • The GELATO clinical trial is a lobular breast-cancer specific immunotherapy trial investigating the response to an immunotherapy + chemotherapy medication combination. This phase 2 trial is open to me...

    19 August, 2018

  • Women who have been diagnosed with Stage 1 - 3 invasive lobular breast cancer (ILC) who have not yet had surgery to remove their tumor may be eligible to participate in a clinical trial.  This trial i...

    06 May, 2018

  • Postmenopausal women who have been diagnosed with invasive lobular breast cancer (ILC) who have not yet had surgery to remove their tumor may be eligible to participate in a multi-site clinical trial....

    15 March, 2018

  • Patients with Metastatic Lobular Breast Cancer (cancer has spread beyond the breast to other parts of the body) have a unique opportunity to advance critical research by participating in the Metastati...

    09 October, 2017

  • Clinical Trials Improve Patient Care and Outcomes and advance critical research to improve our understanding of Invasive Lobular Breast Cancer...

    09 October, 2017

RESOURCES

News + Events

MEET PATIENTS WITH ILC

Facebook Groups

Lobular Breast Cancer (ILC) Invasive Lobular Carcinoma

Support for People with Metastatic Lobular Breast Cancer

ILC Breast Cancer Sisters

External Sites

(BreastCancer.org) Forum 71: Invasive Lobular Breast Cancer

(Inspire.com) Metastatic ILC in the Abdomen/GI Tract Discussion Group

National Hotline

844-ASK-SHARE
(844-275-7427)

Ask for Lobular Peer Support.

Learn More

LBCA does not administer, moderate or review the content posted in these social media groups or the Hotline.

LBCA IS PLEASED TO PARTNER WITH THESE ORGANIZATIONS

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