BY LIZ MCSPADDEN - ILLINOIS, UNITED STATES
Liz McSpadden, MBA. Working for ALDI in Finance. Diagnosed at 30. Stage IV de novo after misdiagnosis (Stage IIb/IIIb, IDC, DCIS, IBC, ER+, PR+). Liz’s doctors call her inspiring and a fighter; nothing stops her from advocating for herself and others and continuing to smile. Her #GraceGritGratitude spirit encompasses everything she represents. Liz is writing a book, bakes pies at her mother's bakery (which from pie sales donates to METAvivor), volunteers for METAvivor and other breast cancer groups, fosters dogs with her husband Dave, and has created a Facebook group called G.R.A.C.E. where anyone with a lifelong illness can sell items to support themselves and anyone can join to buy and support the community of warriors. G.R.A.C.E = Giving, Receiving, and Caring Exchange.
At 30, I thought I had been a pretty “good girl”. We’re taught in our culture to go to our annuals for a breast exam, pap smear, and see our GYNO. We’re coached to be full of poise, grace, and bravery. We’re asked when we’re getting married, buying a house, and having children because all of this is “the norm for a woman”. YET, when we (young women under 40) are diagnosed with breast cancer, there is still a strange norm to treat us YET the same as older women with breast cancer.
It blew my mind at age 30, to be diagnosed with 5 lumps, aggressive grade 3, estrogen positive, stage four de novo (yet I was misdiagnosed for 1.5 years as stage 3), and my treatment plan was very similar to what was done 10 years ago. At age 30, a double mastectomy and removing 16 of my lymph nodes was the standard of care, and when I begun to have menopause, my 2nd oncologist was baffled that my girly parts were dry & sex was painful. I was told to ask my gynecologist, not my oncologist. This was at a top-rated research hospital in Chicago.
Breast cancer culture for young women is extremely challenging because the medical field is still trying to understand why numbers are increasing in our age group. With this puzzle comes a mix of inconsistent standards for how to help young breast cancer warriors. I found myself without much help on the topics of intimacy, life planning, mental health, anxiety, side effects, and overall dealing with stage four. This lack of resources upset me, even with me asking for or about them to my medical team. For these reasons, I switched care teams, advocated for myself, joined online support groups, performed my own research, and sought a lot of advice from other medical professionals. These actions made me feel that the culture for young women as a whole is fairly empty. We have to seek so much of it out there- our culture as a whole is not proactive, it's reactive. That needs to change- for cancer, for medical resources, for all.
There is one topic that needs to be voiced much louder for us with resources as a young MBC warrior; infertility, and how to have a family. As a young woman before I got cancer, we were trying for kids, as we had the right to. Every woman has a right to be a mom, and as breast cancer patients, many of us are robbed of that chance. It broke me when I found out I would never carry a child- and when I repeated these words to my husband, mother, and family, it stabbed me repeatedly. We looked into and spent several thousands of dollars on surrogacy, before finding out just how messy and stressful that process is. We researched adoption agencies, applied, and found out several rejected us due to “stage four breast cancer being fatal & unsafe for a future child”. How is the process so complicated to create/adopt life for us with stage four? We deserve all of the same chances, even though stage four has a “death notice” attached to it. For us, we haven’t given up hope, but our hearts still yearn for that child.
Every young MBC warrior deserves resources for the fight she faces- because the culture around it is still outdated. Young women deserve a better culture of resources for breast cancer, adapted to the appropriate age, with topics of sex, mental health, survivor-ship, life planning, infertility, support groups, and incredibly so much more. Yet, the biggest missing piece still from our broader culture for young women, is detection. Young women do not have a reliable source of protection from breast cancer. What are given as options? Monthly self exams, annual appointments at our obgyns as part of our exam, and an occasional breast
ultrasound/mammogram if we happen to find a nasty cyst. The future for our young women is non-existent for catching breast cancer. I was lucky to find a lump 2 months prior to being diagnosed, which was the only reason mine was caught before it spread to other places besides my bones.
3 ½ years into breast cancer culture for stage four, and I am so distraught. Our daughters, mothers, grandmothers, sisters, aunts, cousins, and so on need more. Modern medicine is moving forward with clinical trials, and research, with hope for a cure. How can we continue to change the culture for MBC patients and young women? Advocacy, research, sharing our stories, and continuing to fight for changing the culture of breast cancer. What do we need more of? People willing to share their voices loud, and proud, across channels and platforms. How long will it take? As long as it takes to cure breast cancer, and then some, as culture change is always behind resolution.
With all of my heart & soul, I will continue to give my life for the fight until my last breath.
MBC warrior, Grace.Grit.Gratitude