Over the past nearly four years I have learned a lot about the various forms that advocacy and volunteerism can take, especially at a small grassroots organization like LBCA. The Merriam Webster dictionary defines advocate (n) as: one who supports or promotes the interests of a cause or group. And volunteer (n) as: a person who voluntarily undertakes or expresses a willingness to undertake a service. I would comfortably say that all volunteers with LBCA also meet the definition of “advocate,” whether one sees themselves as an advocate or not is not the point, but actions are what make all the difference.
This past year, I have witnessed countless acts of passionate advocacy in the service of individuals facing an ILC diagnosis. LBCA advocates continue to tell their ILC stories, serve as active members on committees and volunteer advisory boards, and collaborate with scientists on research project proposals, studies, and publications. Volunteers support LBCA fundraising efforts by putting on fundraising events, donating their time and expertise on fundraising, and making meaningful financial donations to support the cause. And the scientists and clinicians LBCA has the honor to work with demonstrate their commitment to changing the lives of those with ILC every day in their professional lives and in the time they volunteer to support LBCA’s mission and vision-driven activities.
I have some exciting highlights from our volunteer advocate community to share.
- In June/July 2023, over 1400 survey respondents who have had ILC volunteered their time to share their experiences with surgery and surgical decision making. These responses were synthesized by LBCA staff and volunteers into abstracts and posters that were presented at two international conferences and just this month, again at AACR’s annual conference by a patient advocate fellow.
- In September 2023, LBCA launched its Local Advocacy Team initiative to facilitate individuals with lobular breast cancer who want to connect with others with ILC in their local area and conduct in person advocacy activities to raise awareness about ILC. With the support of an amazing volunteer coordinator, LBCA has helped one local team launch, and is helping another to launch soon. These teams are bringing new energy and innovative ideas on how to raise awareness on ILC in their own communities.
- This year LBCA supported 22 advocate opportunities to travel and learn at conferences or trainings: In July 2023, LBCA volunteers participated in the National Breast Cancer Consortium’s (NBCC) ProjectLEAD to sharpen their research and education advocacy skills; in September 2023, advocates traveled to Pittsburgh to the ILC Symposium to hear from the world’s leading researchers and clinicians in the field about ILC research, treatment, challenges, and developments; in December 2023, advocates traveled to the San Antonio Breast Cancer Symposium (SABCS), the largest annual breast cancer conference; and in May 2024, advocates will travel to DC to participate in the NBCC Advocate Leadership Summit.
- A committed special interest group formed focused on metastatic ILC. This group has strengthened the available resources on the LBCA website for those living with metastatic ILC and have spearheaded partnerships to expand access to support services specifically for those living with mILC.
- Advocates conducted outreach to researchers, inquired about how research applies to ILC, and visited research labs.
- LBCA volunteers collaborated with researchers and published studies shining light on how the lack of clinical trials including patients with ILC is limiting development of treatments, and how breast radiologists agree that better imaging beyond mammography is warranted for ILC patients. Click the links to read these articles.
- Volunteers supported the development of patient facing resources such as the new ILC Brochure and Frequently Asked Questions on Tissue Donation, and are working on developing additional resources.
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SAB members Rachel C. Jankowitz, and Patrick W.B. Derksen, collaborated with LBCA staff and patient advocates and LBCA’s ILC research grantee Dr. Karen Van Baelen and other European ILC scientists and advocates on an article titled, Reporting on invasive lobular breast cancer in clinical trials: a systematic review in npj Breast Cancer. The study highlights how the absence of patients with lobular breast cancer in clinical trials impedes development of effective, lobular-specific treatments.
SAB member Dr. Maxine S Jochelson, along with LBCA Executive Director Laurie Hutcheson collaborated on a paper titled, Breast Radiologists’ Perceptions on the Detection and Management of Invasive Lobular Carcinoma: Most Agree Imaging Beyond Mammography Is Warranted in the Journal of Breast Imaging.
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SAB members Dr. Matt Sikora, along with Dr. Rebecca Riggins, and former SAB Chair Dr. Steffi Oesterreich collaborated on a paper titled, WNT4 regulates cellular metabolism via intracellular activity at the mitochondria in breast and gynecologic cancers in the January 2024 issue of Cancer Research Communications.
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LBCA SAB Chair Dr. Jason Mouabbi was guest editor and author of chapters, along with SAB member Dr. Rita Mukhtar and other ILC researchers in a recently released Educational Handbook published by Hospital Healthcare Europe entitled: Invasive Lobular cancer: Current evidence and clinical impact.
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Scientific Advisory Board member Dr. Matt Sikora published A Path to Precision Metabolic Treatment in Breast Cancer: Riluzole, Glutamate Signaling, and Invasive Lobular Carcinoma in the Journal of the Endocrine Society in December 2023.
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LBCA SAB Chair Dr. Jason Mouabbi authored the paper Efficacy of Single-Agent Chemotherapy in Endocrine Therapy-Refractory Metastatic Invasive Lobular Carcinoma in The Oncologist, December 2023 issue.
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LBCA Scientific Advisors Dr. Fresia Pareja and Dr. Otto Metzger, along with former Scientific Advisors Dr. Steffi Oesterreich and Dr. Jorge Reis-Filho published an article titled Clinicopathologic and genomic features of lobular like invasive mammary carcinoma: is it a distinct entity? in July 2023 in npj Breast Cancer.
- LBCA Scientific Advisor Gary A. Ulaner, MD, PhD, is an author of a study called SNMMI Procedure Standard/EANM Practice Guideline for Estrogen Receptor Imaging of Patients with Breast Cancer Using 16α-[18F]Fluoro-17β-Estradiol PET. It was published in December 2023 by Journal of Nuclear Medicine.
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LBCA SAB Chair Jason Moubbi, MD, is an author of Lobular Carcinoma of the Breast: A Comprehensive Review with Translational Insights. It was published online by Cancers in November 2023.
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Patrick Derksen, PhD, is the senior author on a paper showing the development of a new ILC signature called KART. KART is based on ILC-specific biology, and associates with prognosis, the ILC histiotype, invasion, and slow growing cells. Comparative analyses showed that KART prognostically performed as well as LobSig. The article, titled Canonical Kaiso target genes define a functional signature that associates with breast cancer survival and the invasive lobular carcinoma histological type is online now and will be published in December 2023 in The Journal of Pathology.
- LBCA Scientific Advisor Rita Mukhtar, MD, is an author of a study titled Tamoxifen or aromatase inhibitors with ovarian function suppression in pre-menopausal stage I-III lobular breast cancer. It was published in October 2023 by NPJ Breast Cancer.
- Rita Mukhtar, MD, is an author of The impact of histologic subtype on primary site surgery in the management of metastatic lobular versus ductal breast cancer: a population based study from the National Cancer Database (NCDB). The article was published online by Breast Cancer Research and Treatment in October 2023. Dr. Mukhtar commented, “We have a new paper published looking at differences in surgical interventions for metastatic lobular breast cancer compared to ductal. Interestingly, in this setting of stage IV disease those with lobular histology were a little bit less likely to undergo surgery, and also received less radiation and chemotherapy. With slightly shorter overall survival for the metastatic ILC patients, this highlights the need for more focus on metastatic ILC.”
- Maxine Jochelson, MD, and Rita Mukhtar, MD, are co-authors of an editorial titled Contrast mammography-a promising tool for the pre-operative evaluation of lobular breast cancer. The editorial was published by the European Journal of Radiology in July 2023.
- Scientific Advisor Rita Mukhtar, MD, is an author of Area Deprivation Index in Patients with Invasive Lobular Carcinoma of the Breast: Associations with Tumor Characteristics and Outcomes. This study was included in AACR’s Cancer Epidemiology Biomarkers & Prevention in May 2023.
- Rita Mukhtar, MD, is the senior author of HER-2 low status in early-stage invasive lobular carcinoma of the breast: associated factors and outcomes in an institutional series Breast Cancer Research and Treatment. This article appeared in the April 2023 issue of Breast Cancer Research.
- SAB Founding Chair Steffi Oesterreich, PhD, co-authored the study Immune landscape in invasive ductal and lobular breast cancer reveals a divergent macrophage-driven microenvironment. It was published in Nature Cancer in March. She is also an author of Mixed invasive ductal lobular carcinoma is clinically and pathologically more similar to invasive lobular than ductal carcinoma, published in the British Journal of Cancer in January.
- Jason Mouabbi, MD, is an author of Histology-based survival outcomes in hormone receptor-positive metastatic breast cancer treated with targeted therapies. This study was published by npj Breast in December 2022.
- SAB Founding Chair Steffi Oesterreich, PhD, and SAB member Megan Kruse, MD, are among the co-authors of Clinicopathological Features and Outcomes Comparing Patients With Invasive Ductal and Lobular Breast Cancer, a large, collaborative study by three cancer centers that identified differences between invasive lobular carcinoma and invasive ductal carcinoma. The retrospective was published by the Journal of the National Cancer Institute in October.
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Current SAB Chair Rinath Jeselsohn, MD, and past SAB Chair Otto Metzger, MD, are the co-senior authors of A Distinct Chromatin State Drives Therapeutic Resistance in Invasive Lobular Breast Cancer. This article was published on August 11, 2022 in AACR’s Cancer Research, and the full article can be read here.
- Patrick Derksen, PhD, is a co-author of the Current and future diagnostic and treatment strategies for patients with invasive lobular breast cancer appearing in the August 2022 edition of the Annals of Oncology. LBCA-funded researcher Karen Van Balean, MD, is the lead author of this publication.
- Patrick Derksen, PhD, is also a co-author of Results of a worldwide survey on the currently used histopathological diagnostic criteria for invasive lobular breast cancer. The article was published in August 2022 in Modern Pathology.
- Christos Sotirou, MD, PhD, is an author of Timing evolution of lobular breast cancer through phylogenetic analysis. It was first published online by e-BioMedicine in July 22.
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Rita Mukhtar, MD, recently authored The 21-Gene Recurrence Score in Clinically High-Risk Lobular and Ductal Breast Cancer: A National Cancer Database Study, which appeared in the Annals of Surgical Oncology. Dr. Mukhtar noted, “This study used the National Cancer Database to see whether chemotherapy was associated with a survival benefit in patients with 1-3 positive nodes and Oncotype Recurrence Score ≤25. Interestingly in unadjusted analysis of those under the age of 50, chemotherapy was not associated with improved survival in patients with ILC. The application of trial results such as RxPonder to pre-menopausal women with ILC needs to be studied.”
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Jason Mouabbi, MD, had his review Invasive lobular carcinoma: an understudied emergent subtype of breast cancer from Breast Cancer Research and Treatment appear in Breast Cancer Research and Treatment.
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Matthew Sikora, PhD and Rebecca Riggins, PhD were authors of Unlocking the Mysteries of Lobular Breast Cancer Biology Needs the Right Combination of Preclinical Models published in AACR Journals.
Congratulations to our SAB members on their latest work.
One of my favorite quotes by Margaret Mead is “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” One of the great gifts of working at this small but mighty organization is that I get to see this quote come to life every day. On behalf of LBCA, we thank all advocates and volunteers for their efforts to change the world for those affected by ILC.
With gratitude,
Mason Mitchell-Daniels
LBCA Chief Operating Officer and Volunteer Coordinator
