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Lobular Breast Cancer Organizations and Research Funds

by Leigh Pate -

When I was diagnosed with Lobular Breast Cancer (ILC) in 2011 there was very little information available to patients to learn about their disease and little interest in research. Times have changed thanks to advocacy by patients in partnership with researchers committed to unlocking the secrets of lobular breast cancer and improving patient care. Today, your donations and volunteer time can directly support LOBULAR Breast Cancer research and advocacy.  Please explore these opportunities to support lobular breast cancer research and advocacy and consider directing your donations and time to support lobular breast cancer research and patient-centered organizations.  You can download and share a .pdf file of this list or access it on Google Docs.   Lobular Breast Cancer Organizations Lobular Breast Cancer Alliance (LBCA):  United States  Guided by patients with invasive lobular carcinoma (ILC) and committed researchers, LBCA is focused on ILC education and raising awareness of this understudied disease and fostering patient research advocacy to promote more ILC research. LBCA funds ILC research grants for young investigators and is growing capacity to support further ILC-specific research. LBCA welcomes volunteers and monetary gifts to support its mission.  Lobularbreastcancer.org Lobular Breast Cancer UK (LBCUK): United Kingdom Launched in 2021, this patient-driven organization with a medical and scientific advisory board of lobular breast cancer experts, provides lobular information & knowledge development, patient advocacy & support, research & research funding. LBCUK welcomes donations, commercial partnerships and in-kind support. Lobularbreastcancer.org.uk Lobular Ireland: Ireland Lobular Ireland is a network of volunteer patient-advocates with lobular breast cancer working with breast cancer researchers and clinicians. Lobular Ireland advocates for research into ILC and raises awareness, understanding and patient education. Lobular Ireland welcomes contacts from patients, survivors and researchers.  Lobularireland.com The Dynami Foundation: Plymouth Michigan, USA  Dynami was launched in 2016 to further the research, treatment, and prevention of breast cancer. To date Dynami has raised 1.6 million dollars through

Living with Cancer in the Pandemic

by Leigh Pate -

COVID is a thief. The last few weeks have I have found myself at yet another crossroads of my cancer treatment.  While pondering options for the next line of therapy, I also think about the last five years living with fallopian tube cancer, two of which have been in the throes of a global pandemic.  When I was first diagnosed with late-stage fallopian tube cancer (like ovarian) it took me about 15 minutes to figure out that my prognosis was poor and my chance of being alive in 5 years was sketchy (the official stat for my late stage is around 20%).  I had already lived through another cancer - lobular breast cancer -which was diagnosed 5 years earlier.  I already knew exactly what surgery and chemotherapy and radiation meant and its impact on quality of life because I had lived it before.  My gut response when I first discussing treatment with my gyn-oncologist was to fiercely protect my quality of life – mobility, independence, mental functioning, relationships and friendships – when making treatment choices - first and foremost.  And second I knew I had to live life as much as possible in the time I had left, which to me meant traveling and exploring, spending time with friends, walking every day and being in nature and importantly - doing my best to contribute something constructive to the world to try and make things better for those diagnosed with cancer in the future. What I didn’t count on was the COVID pandemic and the impact that would have on navigating treatment within the living-well parameters I had set for myself as I moved forward with my choices for living with this disease.  Living alone and relying on a strong network of friends and family for support added hurdles to navigating intense cancer

Patient and Community Engagement Organizations at Cancer Research Centers

by Leigh Pate -

I was recently asked for examples of patient and community engagement organizations or groups at cancer centers, and compiled this list with the help of the informed members of the Advocate Collaborative (ACE). Turns out that this reference list has been very popular and seems to have met a need in the broader cancer community, particularly among those interested in building their own patient advocacy or community engagement programs so I wanted to make this list available more broadly.  Download it as a .pdf here.  It is also available on google docs here.   This list is meant to be a community resource and it may not be complete.  If something is missing let me know and I will try to add it. Examples of Patient and Community Engagement Organizations at Cancer Research Centers Listed in alphabetical order by Institution The UCSF Community Engagement Center offers Community Engagement Toolkits for community-engaged research, patient advisory boards, partnerships, service learning, etc.   *UCSF Breast Science Advocacy Core Cornell Community Cancer Partnership, Cornell University.  *Dana Farber/Harvard Cancer Center Breast Cancer Advocate Program *Georgetown Breast Cancer Advocates  *University of Illinois at Chicago Cancer Center   *Cancer Research Advocacy Group (Cancer Center at Illinois Urbana-Champaign) *Johns Hopkins Breast Cancer Research Advocates *PIVOT – Patient and Investigator Voices Organizing Together (U of Kansas Cancer Center) *University of North Carolina  Lineberger Comprehensive Cancer Center  Community Advisory Board - UNC Lineberger and The UNC Breast SPORE Advocates *Oregon Health and Science University Knight Cancer Center Research Advocates *Breast Cancer Research Advocacy Network BCRAN (University of Pittsburgh Hillman Cancer Center)  Rutgers Cancer Institute of New Jersey Community Cancer Action Board University of South Carolina Patient Engagement Studio *Vanderbilt-Ingram Cancer Center  Community-Campus Partnerships for Health used to be at U of Washington (Seattle), now is a separate membership organization. *Breast Cancer Research Advocacy Network (University of Wisconsin) * Referenced advocacy programs are courtesy of the terrific resource list included on the Cornell Community Cancer

Remembering Elizabeth, Elaine and Joyce

by Leigh Pate -

Elizabeth Viggiano. Elaine Eigeman. Joyce (Nadine) Bittinger. All remarkable women who have died from metastatic lobular breast cancer. All women who absorbed the news of their devastating diagnosis and instead of hunkering down ... they leaned in. Elizabeth, Elaine and Joyce all made that subtle and rare shift that sometimes happens when a patient becomes an advocate. They transitioned from a shell-shocked patient scrambling to survive one of the worst possible diagnosis a person can receive - stage 4 cancer - to a patient advocate who goes beyond advocating for their own personal health and treatment. They leaned in. Extended a hand. Tried to change the system. Tried and push research forward faster. They took their precious energy and knowledge and experience and applied themselves to making this horrible situation better for others who would come next. Elizabeth and Elaine and Joyce have been on my mind and in my heart recently after Elizabeth's death in August, 2021. So for #BreastCancerAwarenessMonth I want to remember these remarkable women and share the small part of their legacy I was lucky enough to share with them. Elizabeth I first met Elizabeth Viggiano of Portland, OR at the 1st International Lobular Breast Cancer Symposium in Pittsburgh in 2016 where patients with lobular breast cancer from around the country came together with researchers and physicians from around the world, thrilled for an opportunity to learn about our disease. Elizabeth was diagnosed with metastatic lobular breast cancer (ILC) de-novo, meaning her cancer was not detected until it had already spread outside the breast and was incurable. Elizabeth's devastating diagnosis drove her to lean in, and she relentlessly pushed for more research and better solutions for patients with ILC.  Elizabeth left the ILC Symposium and joined a small group

You might be a LOBULAR Breast Cancer Patient if …

by Leigh Pate -

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. 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

EFI: Just Keep Pedaling

by Leigh Pate -

In 2009 I biked across the United States. I left San Francisco with a ceremonial dip of the back wheel into the Pacific Ocean and arrived in Portsmouth NH fifty-two days and almost 4000 miles later, complete with a police escort, popping corks and the triumphant front wheel dip in the Atlantic. I rode with a group of cyclists from around the US with Europe and Asia through a company called America by Bicycle. They mapped the route, arranged hotels, hauled bags and provided support with a bike mechanic, snacks every 30 miles or so and basically provided the security of knowing that someone would come looking if you didn't show up at the end of the day. I went alone but when I left it was with friends bonded by the challenge, thousands of miles and countless stories. We rode fast - as you can without the burden of baggage and secure knowing there is a place to sleep at night. Many days exceeded 100 miles as we worked our way across the ever-changing landscape. I rode EFI - Every F*^%g Inch. I blogged that ride - my first blog. At that time I was very interested in ride statistics - average miles per hour, average heart rate, calories burned, elevation gained, miles per day and dinner - so excuse any typos of posts done in a rush. I was as interested in the physical challenge as I was the territory I biked through or the people I met along the way. Focused on making it to the Atlantic. In later years I grew to see the bike more as a vehicle to find stories and encounters and focused less on the statistics and numbers. My cross-America ride has been

Four Years Later

by Leigh Pate -

I put this blog and website aside after I was diagnosed with advanced fallopian tube cancer in December 2016. After years of travel blogging and bike travel and taking photos and dabbling with publishing articles and even daring to start a book about being diagnosed with my first cancer - lobular breast cancer. Essentially, the story changed. Again. A few months ago in the fall of 2020 I was pondering what to do with with this website and blog. Should I just take it down? Erase these words and memories and images? The voice in these posts - my voice - strikes me as a little naive now. A window into a more carefree time imagining reinventing a life with new possibilities. This blog is essentially a living timeline where I can read my own dreams and goals and watch them evolve. I can follow my own journey from a bike trip through India in 2011 where I was fit and strong and fearless and excited to do more adventures and writing. I read the transition from being diagnosed with breast cancer 6 months later and in treatment for almost a year. I remember clawing back from that illness, determined to reclaim my ability to do everything I had done before and regain what I had lost before cancer ... and Italy was where that happened. I ultimately decided, no. I'm not ready to erase this voice and these memories yet. Though they feel so far removed from who I am today - four years later. Because while my life took a very unexpected turn at the end of 2016 with a second and incurable cancer diagnosis, in many ways it took a turn that doubled-down on the

Behind the Curtain: Essay published in the American Journal of Nursing

by Leigh Pate -

My latest essay, Behind the Curtain (.pdf) was published in the November 2016 issue of the American Journal of Nursing.  The Reflections essay appears each month inside the back cover of AJN, and features previously unpublished personal stories that explore health, health care or nursing.  The article is available online, will be included in their print edition, blog and social media.  The online article link at ajnonline.com is here.  I will make sure my print copies of the American Journal of Nursing magazine are casually yet prominently available for comment and admiration on my coffee table for your next visit.  

Transformations …

by Leigh Pate -

Another personal essay published February 23 on Curetoday.com.  Even though cancer treatment is behind me ... hopefully forever ... I've learned that sharing my story and voicing many of those feelings and fears that cancer patients know is truly helpful for others and healing for me.  So I've begun sharing and writing about my treatment based on journal entries that have remained private until now.   I watched the warm water rinse away the long hair that clung between my fingers and wrapped around my hands and wrists. I ran my hands through hair and rinsed away the hair again. And again. And again. It was time. My oncology nurse had prepared me for this moment. “I will bet my last paycheck you will lose your hair”, he said. “Make sure you procure protection for your head from the cold and sun.” Which was good advice. Hair turns out to be surprisingly practical. But his advice didn’t touch my worst fears. My hair was soft and fine and honey blonde. Now that beautiful hair would be gone, replaced by the scarves and hats that are a symbol of sickness. My bald head would scream “CANCER” like a neon sign, flashing “Sick person, right here”. Strangers would look at me and see a disease. But I wasn’t a diseased sick person. I was healthy and strong and fit and capable and attractive. At least I was until this breast cancer came out of nowhere. I hated the idea of the world seeing anything else. A request to my friends yielded a cascade of gift certificates and hats and scarves. A trip to the wig shop became an adventure as we tried on dozens of wigs. And as we laughed and experimented it occurred to me that I could become anyone I wanted. Perhaps a platinum blonde Marilyn Monroe? Or sexy

Marathons … The Post-Cancer Body

by Leigh Pate -

CURE Magazine published my essay:  Marathons: Coming to terms with a post-cancer Reality.  You can read the published article  here. CURE is a magazine most cancer patients come across at some point during their treatment ... They print a physical magazine quarterly and copies are widely available at cancer centers and doctor's offices ... And patients and their loved ones spend a lot of time in waiting rooms reading magazines.  Subscriptions are free by signing up online at their website.  And they have extensive content online at www.curetoday.com and social media.  I'm excited this article was published by CURE because they have such a strong audience of cancer patients, caregivers and families.  I hope it will help others avoid my mistakes. The text of the article printed in CURE is below: ---------------------------- Marathons "I'm signing up for a half marathon this spring. Who's with me?" My heart sank as I read this on my young friend's Facebook page ... a friend still in the early stages of breast cancer treatment with months of surgeries, chemotherapy and radiation ahead of her. I recognized this trap. Before breast cancer, I was an amateur athlete ... never the fastest or the strongest but I found joy in testing my physical strength and endurance. I biked across the US and India and completed triathlons and runs. After being diagnosed with cancer in 2011 and enduring a year of surgeries, chemotherapy and radiation, I had set an ambitious goal for the one-year anniversary of the end of my treatment: to bike 10,000 miles over three months in Asia and spectacularly thumb my nose at the cancer that had stopped me cold and left my body broken. And why not? The media and the Internet promote glorious stories of cancer patients completing near-impossible physical feats. And I took this message to heart. I was a survivor.

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