This October, for Breast Cancer Awareness Month, we are talking to women: individuals, mothers (matriarchs), friends, wives, and daughters, that have been affected by breast cancer. We have partnered with Young Survival Coalition—the largest nonprofit dedicated exclusively to young adults diagnosed with breast cancer age 40 and under—to help tell their stories as they serve as a foundation for these very women and provide them with a community of endless support.
Like YSC, we believe in the power of community, which is a key survival component in the everyday lives of elephants. Together, we serve as one amplified voice, one that believes there should be a herd behind every individual because no one should have to fight alone.
For this series, we will feature Q+A’s from women who had to start their fight against breast cancer at a young age throughout the month of October. We hope to shed light on their powerful journey’s and highlight their herd that follows alongside.
PART 1: JAMIE
ELEPHANT TRAIT: I'm passionate! I'm passionate in everything I do. In loving, in my loyalty to the people I love, in fighting for myself and others, in helping people, in living life. And I'm passionate to bring an end to breast cancer. I don't ever want my daughters to have to fear losing me or me losing them.
Q: Who is Jamie? Describe yourself in 3 words OR one sentence.
A: I'm still trying to figure that out! But I would say I'm a woman that is evolving and growing and mom to two pretty great kiddos.
Q: You were diagnosed in December of 2008 - when you look back and think about that day, would you ever imagine the life you have now?
A: When I think back to my diagnosis date I remember what a dark moment my family and I were in. My sister was in the ICU fighting for her life from her stage IV breast cancer and I was just told that I now had the same disease. I don't think I saw much beyond moment to moment during those days, so to look at my life now and all the good that I have leaves me breathless.
Q: How did you discover that you had breast cancer?
A:I got myself tested for the BRCA gene mutation when I was 28. My sister was diagnosed at 32, my father had cancer and his mother along with 2 aunts died from breast cancer. So, I was a good candidate for the gene testing. My Doctor especially encouraged the test when I felt a lump under my armpit, that turned out to be nothing. When I came back positive for the BRCA 1 gene mutation I decided to have the prophylactic double mastectomy. After watching my sister live with her stage 4 breast cancer for 8 years I was going to make sure I did everything possible so I never had breast cancer. Before surgery you go in for a mammogram and ultra sound just make sure you're clear of cancer. Wouldn't you know it when I went in for my test they found my breast cancer. My surgery was bumped up a month and now was no longer preventative, but life saving.
Q: How old were you when you were diagnosed? Did it seem unbelievable because you were so young?
A: I was 29 years old when I was diagnosed with breast cancer. Unfortunately, I wasn't shocked at being diagnosed young because my sister was diagnosed at 32. When my sister was diagnosed she quickly became involved with the Young Survival Coalition and through her work with them I met multiple other young women diagnosed with breast cancer. What was more shocking was being diagnosed while my sister was in hospital fighting for her life.
"Each year, approximately 70,000 men and women age 15 to 39 are diagnosed with cancer in the US. Breast cancer is the most common cancer for women in this age group."
Q: Once diagnosed, what was your plan of action? What was it like to advocate for yourself?
A: I was quite lucky when I was diagnosed. It's odd to say that, but I was. My family and I had built a strong connection with the Young Survival Coalition community and with some great doctors - I had multiple people reaching out to me with options. I had a double mastectomy with immediate reconstruction. While recovering from surgery the acting president of the YSC, Anna Cluxton, reached out to me to give me the advice that I will forever be grateful for. She reminded me that there will be a life after my disease and to think about my future after cancer. I wanted a family so she strongly encouraged me to freeze my eggs before undergoing chemo. Chemo will often destroy a woman's fertility. After speaking with an oncologist and coming up with a game plan with him we agreed to put off my chemotherapy for a month so I could have my eggs retrieved and frozen. About a week after, I started an aggressive 18 rounds of chemotherapy to treat my triple negative breast cancer.
Q: In 2017, when we spoke, there was something that you said that really stuck with us [Ivory Ella Team]. When asked if you had become a different person because of your diagnosis you said that you didn't think that there was anything that was different about you and wrote: "I never know if my cancer will come back, stealing me away from my family, my friends. I'm fearful that my daughters will have my gene mutation and have to worry about getting breast cancer. And I'm angry. I'm angry that my sister is gone. I'm angry that her husband lost his wife; her son grew up without a mother. And that my parents had to bury a child. I'm angry she's not here with us. So, I guess that made me passionate about helping others." What is it like for you to read this now? Where are you two years later? What are your fears, growing pains, triumphs, etc?
A: Well I'm still angry, that's for sure. It's been 10 years since my sister died and the tears are still quick to come, as is the rage and deep sadness. I look at my girls and think about how much Tracy would have loved and spoiled them. And I'm sad they've missed out on knowing her and how silly and fun she was. I still carry a lot of fear that my cancer could come back at any time and not respond to treatment, taking me from my girls, my husband and the people I love. But I don't live in that fear as much as I used to. It's a waste of energy and time. Cancer has already stolen so much from me and my family that I refuse to let it take anymore.
Q: Since your diagnosis in 2008, what sort of follow up do you have to do?
A: Every person's treatment and medical plan is different when it comes to cancer. Even the way you respond to chemo can be entirely different than how someone else does. My follow up consists of visits to my oncologist every 4 months. I used to see my breast surgeon and plastic surgeon yearly, but after 6 years its more like every 2 or 3 years. I see a gynecological oncologist yearly, that started back in 2015. With my gene mutation I have an increased risk of ovarian cancer. I was seeing him every few months until he noticed a growth on my ovary that wasn't going away. So I had both of my ovaries and fallopian tubes removed. I also see an endocrinologist every 6 months to help me with the after effects of being thrown into menopause at a young age. I used to have PET scans, CT Scans, MRIs every 6 months. Once I was 5 years out from my diagnosis it has now turned into yearly, and instead of PET scans I have a chest x-ray, ultra sounds and a bone density test. MRIs and PET scans now only happen if I have a pain or symptom my Doctor wants to look into further.
Q: You are YOU, a mother, wife, daughter, friend, survivor - is it safe to say that breast cancer was your diagnosis, not who you are?
A: I am ABSOLUTELY NOT my cancer diagnosis. I am Jamie, who happened to be diagnosed with breast cancer, at the age of 29, while my sister was dying. It's part of my story, it's not me. Now my story is that I'm Jamie, 40, an 11 year survivor, wife, mom to miracle twins, daughter, sister, friend, advocate, bike rider and car dancing and singing extraordinaire! We all have a story. We all have happy and sad chapters. It's up to us to decide how long those chapters will be and how we want them to begin and end.
Q: Why is it important for people who are battling, have survived or know a loved one that is fighting to remember that there is hope?
A: I would say that things are going to suck. Really suck. You're going to feel pain and heartbreak like you never have before. You're going to cry for hours and days. You're going to scream and curse into the wind. You're going to wonder how you're going to survive when you watched her die. But you will do just that. You will crawl your way forward. You will become annoying and stubborn and will question everyone and everything. You will demand better care and a better life, and you're going to hit bumps and roadblocks. You will lose more friends and rage and cry all over again. But it will just help you realign, and ignite the fire to demand more and to help others.
Q: Looking back, what is some advice you would give to your younger self?
A: I honestly couldn't give myself any better advice than what I was already given. My sister was diagnosed when I was 21. She has always taught me that I needed to be my own best health advocate. She encouraged me to seek the opinion of another doctor if the first one didn't take me seriously. She reminded me to know my body and that I knew it better than anyone. She set me up with the tools long before my diagnosis and I listened to everything she taught me.
Q: Just for fun: How many miles have your rode to date with Tour De Pink?
A: I would say I've ridden a little over 2,000 miles with Tour de Pink. and I'm looking for another 220 this weekend!
Established in 1998, Young Survival Coalition (YSC) is the largest nonprofit dedicated exclusively to young adults diagnosed with breast cancer age 40 and under and their co-survivor support networks. YSC also educates and influences the medical, research and legislative communities to address breast cancer in young adults.