LBCA is grateful to introduce Jo Lynn Collins, who has agreed to serve as the new Metastatic ILC Patient Advocate Representative on the Patient Advocate Advisory Board (PAAB). The new role was created to ensure that the perspective of those living with metastatic invasive lobular carcinoma (mILC) is always a part LBCA’s advocacy planning. LBCA Executive Director, Laurie Hutcheson, recently interviewed Jo Lynn to learn more about all that she has been doing to raise awareness about the need for more research into mILC and support others living with it.

Jo Lynn is based in West Virginia, a mom to two daughters and worked as a special education teacher in the public school system before she was diagnosed with metastatic ILC, de novo (i.e., metastatic at initial diagnosis), in 2019. She explains that she initially could not find information on lobular breast cancer when she was diagnosed until she searched on the Internet and found the LBCA website. The struggle to find anything anywhere about lobular breast cancer motivated her to get involved to help spread awareness and information about ILC and LBCA. 

Laurie and Jo Lynn discuss the current resources available for mILC patients through LBCA, private Facebook groups, and through partnerships with Sharecancersupport.org  and Breastcancer.org including:

• Monthly Virtual meetup: Breastcancer.org and LBCA have collaborated on a monthly virtual meetup for those diagnosed with mILC. Register for the next session here. 
• Bi-Monthly Support Group: Share Cancer Support and LBCA partner to provide a support group for mILC facilitated by two LBCA volunteers with mILC trained as peer advocates. Click here or call 844.ASK.SHARE (844.275.7427) option 6 to register.
• Private Facebook Group: Support for People w/Metastatic (Stage 4) Lobular Breast Cancer is not managed by LBCA but is moderated by patient advocates. To apply to join with a Facebook account, click here.