Most people recognize October as National Breast Cancer Awareness Month, but not many people know about National Metastatic Breast Cancer Awareness Day on Oct. 13.
MBC is the lesser known part of breast cancer. However, it deserves a great attention because it is the deadliest aspect of the disease that develops into stage IV and becomes incurable.
Despite popular annual events and pink corporate merchandising in October, MBC hardly seems to get a mention. It received less than 10 percent of the $15 billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom, according to the 2014 MBC Alliance Landscape Report on Metastatic Breast Cancer.
My wife Donna was diagnosed with early stage breast cancer in 2013, at age 38, while being the greatest mother to our two daughters, one who was in preschool and the other a toddler at the time. Donna did everything right. She ate healthy, she did not drink alcohol or do drugs and she never smoked. Straight as an arrow.
She courageously endured treatment, major surgeries and eventually was declared cancer-free about one-and-a-half years later. Life seemed to resume back to a “new normal” for us. But, that became short-lived.
After beginning an exercise program to regain her strength in the fall of 2015, Donna began suffering from knee, hip and lower back pain. After going to physical therapy and advocating for herself to receive imaging tests, we were stunned to learn that she was diagnosed with metastatic breast cancer.
MBC is defined by the spread of cancer beyond the breast and nearby lymph nodes to non-adjacent organs such as the lung, liver, bones and brain. It is irrecoverable. However, receiving proper treatment can increase longevity and quality of life.
More than 150,000 women are living with MBC in the United States, and 75 percent of them initially had been diagnosed with early stage breast cancer, according to a 2017 National Cancer Institute study. It also accounts for about 40,000 U.S. deaths annually.
Donna went from survivor to “lifer,” a term used by those diagnosed with MBC. She would have to undergo treatment for the rest of her life.
Although she could not understand why this was happening, Donna put on a happy face even when she could not get out of bed. Her last chemo treatment did not result in hair loss, so many people did not know she still was sick. She would hear, “You look great!,” or “You are going to beat this!” Some well-intentioned would ask, “When are you done with treatment?”
They did not know. We did not either. Until it became our fate.
Donna would say that she wished her insides matched her outside. She knew that ultimately this disease would take her life. Yet, she carried on. Grocery shopping, birthday parties, errands, chores. However, those tasks gave her purpose. They served as a distraction and let her have some control in her life and pride in taking care of her family.
She continued to volunteer at our daughters’ primary school and teach weekly catechism classes. She intentionally made plans to create lasting memories with her family and friends. Aruba, Wildwood Crest, Jenkinson’s Boardwalk, day trips and lots of pictures!
Donna endured 10 rounds of chemotherapy during the last 18 months of her life, still the aggressive disease spread to her bones, her liver and her lymph nodes. It eventually became unbearable for her the last two months of her life. She went into the hospital for treatment and never came home.
Her body finally succumbed to the disease in September 2017 at age 42.
People need to know more about metastatic breast cancer, and researchers need to keep working to find a way to help prevent it.
Early detection does not guarantee a cure. About 6 percent of people are stage IV from their initial diagnosis and MBC can occur five, 10 or 15 years after a person’s original diagnosis and successful treatment checkups and annual mammograms, according to Metastatic Breast Cancer Network.
Maybe there will never be a cure, but we can make it a long-lived condition instead of a fatal one. No family should have to endure this kind of loss.
Donna made me and her friends and family promise her that we would continue to educate the public and to raise money to help those living with MBC and MBC-specific research.
Join us in fulfilling her wishes by participating, volunteering or sponsoring the inaugural Team ROAR 5K and 1-Mile Walk on Sunday, Oct. 6 at Duke Island Park in Bridgewater. The team’s logo and name is inspired by one of Donna’s fight songs, “Roar” by Katy Perry.
Proceeds will be split between two notable non-profit organizations. Half will benefit local metastatic breast cancer patients through the Somerset Health Care Foundation. The other 50 percent will benefit METAvivor Research and Support.
METAvivor is dedicated to providing support for women and men with metastatic breast cancer and funding research to transition MBC from a terminal illness to a controlled, chronic condition.
Team ROAR’s donation through the Somerset Health Care Foundation will be made available to help patients with MBC, regardless of income or where they are receiving treatment. Resources may include: living expenses, transportation to the Steeplechase Cancer Center at Robert Wood Johnson University Hospital Somerset. Recovery items such as lymphedema sleeves, wigs, head scarves and post-mastectomy undergarments may also be offered through its Sanofi US Wellness Boutique at the Steeplechase Cancer Center.
Please register to run, walk and/or volunteer at https://runsignup.com/Race/NJ/Bridgewater/TeamROAR5K.
Michael Karlis of Bridgewater is chairman of the Donna M. Karlis Memorial Fund, a 501 © (3) New Jersey non-profit organization.