Lobular Breast Cancer Organizations and Research Funds Coping with Cancer by Leigh Pate - April 19, 2022April 26, 2022 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 Coping with Cancer by Leigh Pate - February 22, 2022February 22, 2022 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
Remembering Elizabeth, Elaine and Joyce Coping with Cancer by Leigh Pate - October 24, 2021October 30, 2021 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
Surviving Breast Cancer Protocols Coping with Cancer by Leigh Pate - October 25, 2015October 26, 2015 I wrote this post in my personal cancer journal shortly after being diagnosed with breast cancer in October 2011. Today - October 25, 2015 - is my four-year "Cancerversary". Given this week's news about changing mammogram recommendations, which will put even more of the burden on women to make sure they receive appropriate breast cancer screening, I am sharing my diagnosis story more publicly in hopes it helps others help themselves ... and listen to their body ... and get good care. The new mammogram recommendations have stirred up a lot of confusion. To me, the message that matters most is still to stand up for yourself and your health care ... because ultimately you are your best chance of making sure you get the health care you need, regardless of screening protocols. Now, when asked, I tell younger women: Yes, get your mammogram as the default precaution - even though it's imperfect and even though it didn't work for me - unless you and your doctor discuss the pros and cons of delaying and you are comfortable with that decision based on your personal family history and situation. Yes, do your self exam. And most importantly, mammogram or not, be ready to stand up for yourself and fight for good medical care. You are welcome to share this to those who you believe will benefit. Thanks. Protocols in health treatment can guarantee a reasonable standard of care, but they are also formidable barriers. My cancer diagnosis was a wake-up call. Last October I called to schedule my regular mammogram. I felt around on a self-exam (which I rarely did) before going in, and to my surprise found something - a hard round pea-sized knot up near my right armpit. I went in to the breast center for my appointment and told them that I