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 of patient advocates and researchers who ultimately worked together to establish the Lobular Breast Cancer Alliance.  She was instrumental in getting LBCA launched and established the crucial first three years and in raising the profile of ILC in the breast cancer world. Elizabeth became LBCA’s representative to the Metastatic Breast Cancer Alliance and she effectively worked to heighten the profile of lobular breast cancer in the metastatic advocate community.  Elizabeth was an advocacy force. Determined. Kind. Persistant.  Relentless.  Effective. Compassionate. Loved by her peers.

Lobular breast cancer is 15% of all breast cancers and it is different than the common type of breast cancer that forms a lump.  One of the ways it is different is that it can spread to unique places from the most common type of breast cancer – including the pelvic and abdominal organs.   Unfortunately patients with ILC mets to the abdomen and pelvis face many challenges with scans, treatments and clinical trial access.  Elizabeth set out to change that.

Elizabeth was a single Mom and determined to live long enough for her daughter to “launch”.  She succeeded and saw her talented and compassionate daughter enrolled in college and on her way, in part due to Elizabeth’s persistant fight to gain access to clinical trials and her persistant quest to have treatments for metastatic ILC that were in trials in Europe to be brought to the US.  I remember sitting at a conference table at the NorthWest Metastatic Breast Cancer Conference in Seattle with Elizabeth in 2019.  She shared with me that she had been accepted into a clinical trial for a promising new drug, but had been randomized to the control arm was was getting basic chemotherapy – a drug called Taxol.  She teared up as she said this, and we held hands and cried together and I tried to console her and shared that I was also on Taxol for my fallopian tube/ovarian cancer and despite having low expectations I was having a really good response to that drug, so maybe it would go better than she hoped.  She stuck with that trial, in part hoping to be granted access to the experimental drug for compassionate use after the Taxol failed and in part being committed to clinical trial research and wanting to make that study successful for future patients.  She was never granted access to try the experimental drug.

Elizabeth made many contributions to educating and supporting others in the lobular breast cancer community and metastatic community. As a gifted nurse-educator she helped other patients cope with their diagnosis by explaining their disease and answering their questions in a way that helped them understand, and brought them the precious peace of knowledge.  She was a sought-after mentor who helped everyone from the newly diagnosed to metastatic patients struggling to cope with ILC mets.  Elizabeth was fierce and a light and I respected her.  I grieve for her.

Elaine

Elaine Eigeman also came to the 2016 ILC Symposium in Pittsburgh, and I was thrilled to learn that she was my neighbor in Seattle.  Elaine was first diagnosed with Lobular Breast Cancer over 20 years before she developed metastatic disease to her abdomen, and she struggled with frequent bowel obstructions, difficulty eating and eventually developed rare metastasis to her eye.   When she was in hospice in 2019, Elaine asked me to help her find a research institution where she could donate her body and tissues to research – someplace where they could take her rare presentations of lobular metastatic disease  – particularly to the eye – and preserve them for research after her death.  And while I reached out to all of my contacts and we tried, there was nothing available for rapid autopsy close enough to Seattle to enable this last request.  Elaine took the news in stride and thanked me for trying and giving her the peace of a definitive answer, even if it wasn’t what she wanted to hear.  And when she died days later she left the fledgling Lobular Breast Cancer Alliance our first and largest bequest, requesting that it be used to fund something to make LBCA sustainable and fund something that would not otherwise be possible to make sure this organization succeeded.  I was so honored and humbled when she told me she wanted it clear that that this contribution was in honor of me and her respect for me.  We cried on the phone as we said goodbye.  And I cry now as I write this, remembering her.

Elaine was one of the best organizers I ever met and her advocacy skills would put most professional political operatives to shame.  Before lobular advocacy got started, Elaine was a driving force in lymphedema advocacy – a debilitating frequent side effect of breast cancer treatment that I also have had to manage.  She led an extraordinary national volunteer effort to pass the Lymphedema Treatment Act in Congress which strives to force Medicare to include lymphedema sleeves in reimbursed care.  I sat in meetings with her and Congressman Reichart, the lead bill sponsor from WA and Senate staff and watched her work magic with political skills that far surpassed mine – and I had been working in politics for years.  Lymphedema was her leading advocacy project before her metastatic diagnosis, and most cancer patient advocates know if you are leading something you have to pick your cause because cancer treatment and multiple leadership roles are too much.  She is revered and admired for her work on bettering treatment for patients with Lymphedema.

Joyce

Joyce Bittinger (Joyce Nadine) on Facebook lived in Seattle.  She died in 2018. As Joyce struggled to find treatments for her stomach and abdominal metastasis, she would reach out to me for information about my treatment for fallopian tube/ovarian cancers, seeking information about therapies like intra-perennial chemotherapy and HIPEC and debulking surgeries as well as reliable tumor markers and scans, frustrated that many of these techniques to treat abdominal metastasis for other cancers were not made available to her and other patients with ILC in the abdomen.

I met Joyce when she was working with an amazing group of Seattle-based metastatic breast cancer advocates and the Susan G. Komen Foundation local affiliate, Komen Puget Sound, to organize the first patient-centered, patient-driven Northwest Metastatic Breast Cancer Conference in the country.  Joyce succeeded in including a special session on lobular breast cancer in this conference, a coup as lobular breast cancer was frequently ignored and always left out of conferences and events.  Joyce reached out to me for help recruiting nationally known speakers and to get involved. Unfortunately Joyce was unable to finish organizing the lobular sessions, and I found myself “drafted” to take over, and I am so glad I did and got to know and work with all of the amazing women involved in metastatic breast cancer advocacy in Seattle and nationally.  The conference and the lobular breast cancer sessions which we entitled “Lobular 101 – Fundamentals” and “Lobular 102 – Metastasis and Clinical” were a huge success and were live-streamed and recorded and were the first patient friendly session on lobular breast cancer ever widely distributed to reach patients, over time garnering thousands of views and filling a huge educational need.  We all cheered when Joyce was able to come to the conference with her caregiver and give a touching opening welcome, and you can hear her story and “meet” her in the first 5 minutes of this recorded session.

Joyce also left a lasting legacy as the founder of a Facebook support group for patients with metastatic lobular breast cancer which has now grown to nearly 700 members and provides a compassionate, knowledgeable place for patients with lobular metastatic disease to meet each other, share experiences and knowledge and find support. 

Elizabeth, Elaine and Joyce all deserved better than this sneaky and hard-to-treat disease. They deserved better than to die of an under-researched type of breast cancer that for years had very little information available to patients until recently – including where it can spread and symptoms to report – and has such poor tools to track this disease and treat it particularly when it spreads to the abdomen and pelvis. They most definitely deserved better than to die of a type of breast cancer that was for years dismissed as “indolent” or even as a “good breast cancer” as there was nothing indolent or good about their deaths. They all rose above their diagnosis and leaned in to try and do whatever they could to improve the outcomes for the women lobular breast cancer who come after them. Their lives mattered, and they left a legacy that helped many others who came later.

All of these women influenced me. They all touched my heart with their grit and strength and perseverance and kindness. And when they died I grieved for them. I still grieve for them.

So I have done my best to carry forward in the spirit of Elaine. And Joyce. And now Elizabeth. And when I die I am comforted trusting that other advocates will do the same for me. They will take the seeds of change and progress I have helped to sow and help them germinate and thrive. And ultimately they will do everything they can so that in the future no-one else has to experience the grief and suffering and pain that cancer inflicts.

Elizabeth. Elaine. Joyce. Your lives mattered. You made a difference. Thank you.