Young Women Can and Do Get Breast Cancer
Katherine’s story Age at Diagnosis: 31
My story begins before my breast cancer diagnosis. I was 31 and suffering from severe gastrointestinal (GI) pain. I was frustrated after seeking help from several gastroenterologists. I was told several times that I was young, healthy and should focus on living my life. While focusing on finding a solution and cause for the pain in my abdomen, I noticed one morning in the shower that my nipple was retracted and that my left breast seemed swollen. I immediately made an appointment to see my gynecologist. Ironically, a nurse in my doctor’s office told me: “There is a 90% chance it’s nothing.”
After several tests and a consultation with an oncologist, my diagnosis was Inflammatory Breast Cancer. The cancer was both estrogen and progesterone positive, and I was highly estrogen sensitive. I had a 5.2 centimeter tumor, and it was aggressive. My oncologist knew my husband and I had always planned on having children and suggested I see a fertility specialist right away. I needed to understand all of my options before starting treatment.
With an impending treatment regimen that included a bilateral mastectomy, along with both chemo and radiation, I already had a lot to consider. I then met with a fertility specialist who told me that if I wanted to harvest my eggs, I would need to go through In Vitro Fertilization (IVF), which would delay me starting treatment for approximately six weeks and entail exposing my body to increased levels of estrogen, which I now knew could be detrimental in preventing the aggressiveness of my cancer.
After discussing it with my husband, we decided not to delay my treatment or risk exposing my body to increased estrogen levels. We put the idea of biological children away and decided to deal with the cancer first before attempting to find the answer to how we would build our family.
As part of my cancer journey and treatment, I needed to restore my body to a healthy weight and focus on nutrition, while still battling the unknown issues around my GI pain. It took a visit to my gynecologist to decipher why I had so much pain in my abdomen. I had endometriosis on my GI tract. My OB/GYN said it was rare that anyone who had been on the pill would have endometriosis so far away from the uterus, as, generally, being on the pill helps prevent endometriosis.
Though I was still absorbing that I could get breast cancer at my age and now handling the effects of my endometriosis and GI pain, I was unsure of how I felt about the idea of seeking out a “support group.” My oncologist’s office gave me some resources. I received a binder with information, but only one pamphlet that seemed to even begin to fit my needs for support, the Angel Network , part of Imerman Angels. I decided to call and am so glad I did. The person I spoke with at the Angel Network recommended Young Survival Coalition and said I might find young women like me there who were also facing this disease and would understand what I was going through … and the women at YSC did.
As I started to heal from surgeries and recover from treatment, I was grateful for the women of my local YSC support group in Seattle. They not only provided moral support, but also practical advice based upon their own experiences. They shared openly and allowed me to ask questions. They suggested things like asking for fluids during treatment, which made the experience of chemo more comfortable; talked about the awkwardness of having to have our husband give us shots during treatment and how that made us feel vulnerable, as well as provided a place to laugh and have honest conversations.
Those candid conversations inspired me to tell my story publicly with the hope of providing support to young women dealing with breast cancer who might not have a YSC group in their backyard. In 2006, I wrote the book who in this room: the realities of cancer, fish and demolition. It’s a creative nonfiction story. I changed the names of everyone involved, but the candor in the stories remains intact.
My story most certainly does not end there. It was therapeutic for me to tell my story, but the real joy of this journey has come from the smiling faces of my two children. Yes, two children!!! Both of them wonderful, happy and well-adjusted little human beings, who came into my family’s life and made us complete. We had researched international adoption but found many obstacles, so we decided to become certified foster parents. We knew we had a lot of love to give and were looking to give a child a good home. We also were open to fostering and adopting a child from a different background, who might not look like us.
We subsequently got a call from a private adoption agency letting us know that a sweet little girl had just been born who was available for adoption. She was a healthy African-American baby, and we were thrilled. Having our little girl was wonderful, but we also wanted another child so she would have a sibling. This time, we looked for an African-American child because we wanted Josie to look at her sibling and feel like she resembled someone in our family. Last year, we adopted a one-year-old little boy. He is the last piece of the puzzle and completes our family.
Some days, when I look at my daughter, I struggle with the fact that I did not choose to have reconstruction. At the time, my desire to be done with surgery was stronger than my desire to have breasts. I worry about Josie experiencing changes in her body as she matures but notices that mommy doesn’t have breasts. I think about the new methods that are available for reconstruction today, and I’m considering it. I often ask my mother or sister to take Josie into the bedroom when they change, so she understands not all women look like mommy and that when she has breasts she will not be afraid of them, but embrace them.
I struggle … I have come so far, but cancer has left me with many issues still to face and I hope that by telling my story we are all a little better educated, a little stronger and a little braver as we battle this disease.