When people hear I have stage IV breast cancer, I wonder if they automatically think I’m going to die. No one has ever said that to me, but I still wonder this sometimes. I am a stage IV breast cancer survivor, and I’m proud to say that, because after 5 years, I’m still striving and thriving. I want people to not immediately think of metastatic disease as a death sentence. I want people to understand I still fight just as hard as people with stage I, II or III breast cancer. And as long as researchers continue to develop new medicines, we still have HOPE.
I was diagnosed with HER2-positive breast cancer in September 2009 while I was still on active duty in the military. When my doctor told me I had stage IV cancer, I asked, “How many stages are there?” She said, “Sheila, you have the top one.” Is stage IV breast cancer really a death sentence? My answer would be NO.
Still, when I found out I had metastatic breast cancer, my first thought was to ask God, “Am I going to die?” As the years passed, there have been so many different targeted therapies that have been approved for treating HER2-positive metastatic breast cancer. The advances in medicine have had a huge impact on my survivorship: I’m currently on Herceptin and Faslodex, and these two medicines have been working amazingly for me. My mother died of stage IV breast cancer in August 2004, and I wish I would have known more about the disease then. I wish she had had the medicines that I’ve been on these past couple of years – maybe she would have lived longer.
I’ve met so many amazing women with metastatic breast cancer and their journeys are truly amazing, as amazing as anyone diagnosed with this disease. However, as an African-American stage IV breast cancer survivor, I haven’t met many other African-American women with this diagnosis. When my mother faced this disease, cancer was not talked about too much in our community. It goes to show that it’s a subject that needs to be addressed and discussed in the African-American community. For African-American women, our mortality rate from breast cancer is much higher than it is for any other races. We need to talk about it.
Before I was diagnosed with the disease, I never realized the amount of publicity that goes into Breast Cancer Awareness Month. The pink comes out and people are actively talking about breast cancer and raising lots of money. A certain percentage goes here and a certain percentage goes there. I’ve heard people say that they hate pink. I think pink stands for advocacy, reminders about mammograms and self-breast exams, and it stands for strength in numbers, that we are all in this together (with or without this disease). But aside from this, who really advocates for us stage IV survivors? What people don’t realize as well is that there is much more to breast cancer, especially stage IV, then just the physical side (which is still important) like chemo, radiation, mastectomies and reconstruction surgeries. For me, the emotional toll sometimes plays a bigger part in the diagnosis than the physical. As a person with stage IV breast cancer, I want to be heard this October, too. I want to stand arm-in-arm with my sisters with stages I, II and III breast cancer. But that means pink and October need to recognize the realities of those with metastatic disease, the realities I face.
These past 4 years, I’ve been very blessed, from the support from my Air Force family when I was in the military and receiving chemo, to the awesome support system God surrounded me with. I know when I can’t pray for myself, someone out there is praying for me. The love and support that surrounds me every day is a miracle only God could have sent. My family is amazing, especially my three sisters Cheir, Angela and Teddie. My daughter Janaia is my strength when I can’t find the strength to get up in the morning. She makes me hry up, even if it’s to walk around the mall (I love shopping). God knew I would need a strong support system to fight and survive this disease. My doctors and nurses are amazing. I’ve reconnected with old friends and have made some new ones. I’ve learned patience, because with breast cancer screening sometimes it takes a while to see any results. I would go into a scan and pray to God to let there be some shrinkage, but instead I got stable. Little did I know when I first started this journey that the word “stable” would be such a powerful one. It doesn’t sound like much, but as a woman with stage IV breast cancer, stable is almost like hearing that I’m in remission.
Stay strong, survivors, and keep up the fight – please don’t forget about those of us with stage IV. We fight alongside you every day. Hopefully one day, there will be a cure for us. But until then I will continue to fight and spread the word to my family and friends and anyone I meet about this awful and terrifying disease.
Sheila Johnson-Glover lives in St. Louis, Missouri, where she’s involved with her church and enjoys the company of family and friends. She served in the United States Air Force for more than 24 years. Sheila is a Young Advocate from LBBC’s Young Women’s Initiative and volunteers for the Breast Cancer Helpline.
Visit lbbc.org/hearmyvoice to read the other posts in our series.