As we do annually, in June 2024, LBCA asked its constituents (newsletter subscribers and social media followers) to participate in an electronic survey to help assess how LBCA is doing towards achieving our strategic plan goals. We very much appreciate the feedback that respondents have provided and will use comments to continue to improve what LBCA provides.. 

This year, 568 individuals shared their anonymous feedback in our survey. We ask about experience with the information and resources we share on our website and for input about what information respondents might wish to find on our website but do not.

Highlights of the results are as follows:

• 97% of respondents agreed or strongly agreed that the information for patients on the website is useful 
• 98% agreed or strongly agreed that the information on the website helps explain ILC. 
• 95% agreed or strongly agreed that the website conveys the urgent need for more research 
• 87% agreed or strongly agreed that LBCA is the “go to website” for information on ILC. 
• 87% agreed or strongly agreed that the LBCA website has the information respondents seek 
• 53% or respondents have shared information from the LBCA website in conversations with their care team.

A summary of the types of information some respondents said that they wished they could find on our website includes the following: 

• More information on LCIS 
• More information on clinical trials for ILC and how to enroll
• Information on diet and exercise as it relates to preventing recurrence
• More information about metastatic lobular breast disease
• Clearer information on specific and new treatments for ILC
• Information and recommendations for ILC specific follow-up treatment 
• Information on how to find a doctor that knows ILC for care or when seeking a second opinion

It should be noted that we will attempt to add information noted by respondents if it exists. LBCA always aims to produce patient facing resources based on current ILC research and science and ensure that what we publicize is first vetted by members of our Scientific Advisory Board. Unfortunately, there are not yet any specific treatments for lobular breast cancer or for follow-up after individuals with lobular breast cancer complete hormone therapy though we all agree, we wish this to change. It should also be noted that LBCA does not make any recommendations regarding specific clinicians or providers. 

We are continually trying to improve how we make resources available on our website and to ensure that they can be easily found. We appreciate the feedback from respondents in this regard and intend to work to reinforce resources that already exist and to highlight and clarify where to find information that people indicate they are having trouble finding when it is on our website.  

The following is information we gathered on the demographics of the survey respondents:

• 67% of respondents were between age 50 and 70, while 23% were over age 71
• 92% of respondents who provided information on their race/ethnicity indicated they were of White/ Caucasian / European descent
• 84% reported they were from North America, while 12% of respondents were from Europe, followed by 3% from Australia / Oceania and Asia combined
• 97% of respondents were individuals who have or had invasive lobular carcinoma (including metastatic ILC), others were friends/loved ones; researchers, or clinicians/support staff. 

LBCA thanks all those who took the time to share your perspectives with us this year. Your opinions are helpful for us as we continue to grow this small but mighty organization.