In November LBCA surveyed constituents electronically about what information they were given about ILC when diagnosed and whether they were told anything about LBCA. They were also asked questions about what information about ILC and LBCA appears on their hospitals websites, if any. Our intention was to collect data that we felt certain would demonstrate that breast cancer care teams are still falling short and not sharing what information is known about lobular breast cancer with newly diagnosed patients and not sharing anything about the rich resources and community that LBCA provides. We also collected information about the hospitals and where they are located. Our perception that patients are being left in the dark was borne out by our results.

Key aspects of our results reported from respondents inside and outside of the US include:

There were 1,059 respondents (743 US and 316 outside of the US). These respondents represented care received at a total of 719 different hospitals (463 in the US and 256 outside of the US).

• Of the 743 US respondents, 127 (17%) in 110 (24%) of different US hospitals were given comprehensive information about ILC by someone on their care team at diagnosis. 
• In only 7 of these cases (.6% of US respondents) in 7 different hospitals (.2% of US hospitals) respondents were also given information about LBCA when diagnosed with ILC at any stage.
• We also noted that in the case with 7 other respondents, they were not given information about ILC when they received their ILC diagnosis though they reported information about ILC and LBCA on their hospitals’ websites.(It should be noted that it has only been in the last two years that LBCA has been making a concerted outreach effort and only in the US, to persuade hospitals to have information about ILC and LBCA on their patient facing webpages).

Outside of the US, only 34 (11%) of 316 patients in non US hospitals were given comprehensive information about ILC. 

• • In only 4 of these instances  (.1%) were patients newly diagnosed with ILC also given information about LBCA.

It is the case that some of the respondents both within and outside of the US may have been diagnosed before LBCA existed in 2018, but that number is also likely small.

We are grateful for all of the survey respondents contributions. We will use this information to start to change hospital behavior. Over the course of 2026, with the help of many ILC patient advocates, LBCA  is committed to dramatically changing these findings about hospital breast cancer programs. We aim to reach out to hospital breast cancer program care teams, connect with the hospitals’ care navigators, and we will drive home the points about why providing information about ILC and the resources of LBCA to newly diagnosed ILC patients at all stages is so critical.