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You might be a LOBULAR Breast Cancer Patient if …

Breast Cancer Awareness Month #BCAM is burdened with baggage within breast cancer world. I usually stay out of it beyond trying to share information to empower or educate or to amplify other’s efforts as they struggle to be heard in this busy pink space in October.

ILC’s cells form in single file lines, like a net rather than clump together to form a lump or a mass

But this October for Breast Cancer Awareness Month  I want to give voice to some common frustrations and fears I frequently hear from patients as they struggle to cope with Lobular Breast Cancer (ILC), the flavor of breast cancer I was diagnosed with in 2011 and which makes up 15% of all breast cancers. ILC is a different cellular type of breast cancer that frequently does not form a lump and is often missed on screening mammograms. ILC can respond differently to common cancer therapies. It notoriously hard to track on scans and imaging. And until recently it was rarely researched so in spite of the vast resources devoted to Breast Cancer research, support and education, lobular breast cancer remains poorly understood and is simply treated the same way as the more common ductal cancers, despite clear differences.

It was frustrations with my own ILC diagnosis that led me to found the Lobular Breast Cancer Alliance (LBCA) along with other ILC patient advocates and researchers. We were tired of the lack of resources and information about our disease and united to advocate and drive more research. And I still hear many of the same frustrations and questions in the closed support groups for lobular breast cancer patients as they struggle to cope with their disease and understand their best treatments. Even though we have made great progress in making information available and advancing research since I was diagnosed in 2011.

So … in honor of Breast Cancer Awareness Month 2021 … and with humble acknowledgement that everyone experiences cancer differently and that these experiences will not accurately describe everyone … I offer a glimpse of life and common frustrations of many patients who are #LivingwithLobularBreastCancer

You might be a LOBULAR Breast Cancer Patient if …

#10  Many patient’s faith in healthcare is shaken after being diagnosed with a large lobular breast tumor, often with no lump, frequently after years of clear screening mammograms. Worse is they are told they have a type of breast cancer they never heard of. And who knew before diagnosis that breast cancer even came in “types” anyway?!

#9  Many patients never quite trust that scans will pick up the cancer if it comes back.  Some insist scan orders include “lobular” breast cancer hoping the radiologist will look beyond lumps and masses.

#8 Some patients lack confidence in treatment based on studies that only included small percentage of patients with ILC because at the time nobody thought to track or evaluate differences in histology. This may finally starting to change with more lobular specific studies and trials and studies enriched with patients with ILC.

#7 Patients hear that chemotherapy may not work well for many ILC tumors, but nobody can provide a better alternative yet.  So many get the chemo and just hope it doesn’t do more harm than good. ILC needs to be including in trials and studies to establish biomarkers to better understand chemotherapy and lobular breast cancer.

#6 Some patients volunteer for a clinical trial for a promising new treatment, only to be told that their non-lumping lobular metastatic breast cancer does not meet RECIST measurable criteria and they don’t qualify.  (Metastatic ILC patients are significantly under-represented in clinical trials)

#5 Some patients spend a precious year in surgery, chemo, rads and hormone therapy, but learn quickly their ILC spread … possibly already before they were diagnosed. It was just missed on staging PET or CT scans (fortunately there are several clinical trials testing a different a different imaging agent to try and fix this now NCT04750473, NCT04883814, NCT04252859)

#4 Many patients worry and struggle over decisions for lumpectomy/rads or mastectomy … they wonder if survival/recurrence outcomes for ILC’s diffuse, multifocal, more frequently bilateral and harder to surveil tumors are REALLY equivalent?

#3 When many patients reach their 5 (or 10) year “cancerversary” and are officially released from treatment they are happy … but also wonder if they need to stay on therapy longer given #lobular’s tendency to recur much later and worry it will come back.    

#2 Many patients are never told #lobular can metastasize to unusual places like the pelvis, GI tract or the eye or what symptoms to report. Many doctors – primary care, gynecologists and GI specialists – don’t know about ILC metastatic disease to help reliably diagnose it.

And #1 While excited about research to drive better understanding, refine therapies and identify new targeted treatments, it’s discouraging to realize that even though #lobular is 15% of all breast cancer, it receives <1% of breast cancer research funding in the US. We have A LOT of work to do to push for more research funding, and fund research as a lobular community.

For Breast Cancer Awareness Month, remember:

It’s not just Breast Cancer. It’s LOBULAR Breast Cancer

Not all Breast Cancer is the Same.

#Lobular breast cancer needs more research and funding

We are making progress and building international collaborations and partnerships with researchers, physicians and advocates, advocate driven patient education and fueling more interest in research and refined therapies. Learn more about Lobular and please consider donating or supporting for these terrific organizations working to advance research and educate about Lobular Breast Cancer.

Lobular Breast Cancer Alliance @LobularBCA

Lobular Breast Cancer UK @LobularBCUK

Dynami Foundation

Thanks to these groups for their advocacy and research, and to all the researchers, physicians and organizations focusing on or including lobular breast cancer in their work.

Lobular Ireland @LobularIreland

European Lobular Breast Cancer Consortium @ELBCC

And particularly: thanks to all of the lobular breast cancer research champions who are pushing hard to better understand this disease and working so hard to improve outcomes for patients. We love you for it.

Leigh Pate
Leigh Pate lives in Seattle, WA. She is a two time cancer patient and cancer research advocate, a communications specialist and writer, a nature lover and fan of beaches, mountains and big trees in the Pacific Northwest.

2 thoughts on “You might be a LOBULAR Breast Cancer Patient if …

  1. Hi Sheri. I know a bit about it, however I am not an MD or health professional nor am I personally living with lobular metastatic disease to the GI tract. I can try to point you to some resources if you have any specific questions. Or generally, I would point you to the Lobular Breast Cancer Alliance and their publication’s library which includes several research studies on metastatic disease and there are several educational videos and presentations on metastatic ILC on this page of resources for Metastatic ILC. There is a closed (not public) support group on Facebook for metastatic ILC patients called Support for Patients with Metasatic Lobular Breastcancer, and many women there are living with mets to the GI tract and are familiar with dealing with it as a patient.

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