Along with people diagnosed with lobular breast cancer, caregivers are also a part of the Lobular Breast Cancer Alliance (LBCA) community. They often find us as they look to learn about the disease after the diagnosis of their loved one. They also want to raise awareness in others about this common yet understudied breast cancer subtype that needs more research. Here is one of their ILC stories.
My name is Brian. My wife, Nancy and I live in California. Our story began when I was 16 and she was 15. We were high school sweethearts. After being separated by a 2,500 mile distance for 14 years, we reunited and were married in 1992.
Our life was exceptional until Memorial Day Weekend 2017 – May 26 to be exact. Nancy stated her arm and hand had been going numb sporadically for a few months, unannounced to me, as she thought it was from sleeping on it wrong. This day her numbness didn’t subside, which prompted me to take her to urgent care. A CT scan was performed resulting in a breast cancer diagnosis that had possibly metastasized to her bones. A few days later a biopsy confirmed that she had de novo metastatic breast cancer. De novo means a diagnosis of stage IV breast cancer from the start. It was also confirmed that it had spread to her bones.
How could this be?!? Well, to be accurate she has lobular breast cancer, which is the sneaky type of breast cancer. It forms in a distinct, single-cell, string like pattern rather than the more common lump. This causes it to be harder or impossible to feel on a breast exam and is often not detectable on routine mammograms or other screenings, which leads to a later detection at a more advanced stage.
With her diagnosis, I became Nancy’s caregiver. One of the most difficult things for a caregiver to do is to support his loved one with a breast cancer diagnosis. One of the most admirable gifts you can give her is to be compassionate, respectful, and understanding of what she is going through without complicating and creating additional stress. This means you need to sometimes suppress your opinions, feelings, wants, and emotions to help your loved one cope. By doing this, you discover that you are more courageous and resilient than you ever imagined. Listening to her is crucial.
After the shock of her diagnosis wore off, Nancy decided it was her job to become an invasive lobular carcinoma (ILC) advocate. She wanted to help get information about ILC to people newly diagnosed to give them more comfort and information from the outset unlike what she went through before finding resources such as the Lobular Breast Cancer Alliance (LBCA).
Last year she became a member of LBCA’s Patient Advocate Advisory Board. Helping others has always been her passion in life, and she has a talent of convincing people to join her on her quests. Because of our history, and my love for Nancy, I gladly joined her ILC advocacy work.
We also now travel to any breast cancer and/or caregiver retreat, camp, seminar, symposium, engagement, conference, training and any other functions available. This summer we applied for and received travel scholarships from LBCA and were able to attend the International ILC Symposium in the Netherlands. Together we learn so much – including the latest scientific information – and we do our best to pass this on to others. At a recent retreat, their motto was “Don’t Postpone Joy!” Nancy and I now choose to live by this motto with our remaining time.
In my opinion, cancer is an intelligent and evil disease. It is my job as a caregiver to make sure Nancy is supported and loved while enduring her new normal.
Are you interested in telling others about your own lobular breast cancer story? Please email firstname.lastname@example.org to request more information on how to submit your story. For more information about lobular breast cancer or to make a gift visit lobularbreastcancer.org.