In 2003, at 25 years old, I noticed a lump in my left breast and had a sonogram. I was told it was just fibrosis and even though it hurt, it was not life-threatening. The doctor was very dismissive of my concerns because I was young and had no family history. I was given the bad advice to get it rechecked in a couple of years. I was relieved that it wasn’t cancer, but also disappointed that there was no treatment for it.
My life went on. I was working part-time to pay-off student loans and volunteering at a local animal shelter. I married my high school sweetheart and we settled into our cozy life. However, the lump still worried me, especially because got bigger and more painful. I should have gotten it rechecked, but instead I told myself I was just a hypochondriac. When the pain became unbearable and I finally went in, it was too late. I was 27 years old when I was diagnosed with Metastatic Breast Cancer with metastases in my liver.
The day I met my oncologist I knew he was the right fit. He made an odd little joke and quickly apologized, but my husband and I were grateful for the levity because that’s exactly how we try to cope. He didn’t quote statistics or give me an expiration date, but he also didn’t sugar coat anything. He told me plainly that I had a difficult journey ahead, but he was going to do whatever he could to make sure it was a long one. I tell people all the time how important it is to have an oncologist that you work well with and trust completely.
I started on Taxotere and Herceptin in December of 2005. This combo worked well for me and we slowly saw the tumors disappear. I did this treatment for two years and worked through most of it.. By the middle of 2007 I was given the magic words, “No Evidence of Disease,” or NED, which means that no active cancer can be seen on any scans. After repeated scans came back clear, I stopped Taxotere, however, I remained on Herceptin treatments for maintenance. Things were going well until the summer of 2008, when I had a seizure and a brain tumor was discovered; it was a new breast cancer metastases. I had a craniotomy and gamma knife radiation to treat it. Early in 2009, a second brain met developed and was treated with gamma knife alone. I have not had any active disease since then. My current treatment is Herceptin and Perjeta, which is given by iv port every three weeks. My heart is weakened because of the Herceptin, and I am closely monitored. I may need to stop this treatment soon if my heart continues to decline, but I hope I can stay on it indefinitely.
As an additional twist, I discovered I was pregnant in April of 2009. I had no idea I was capable having children because chemotherapy had caused medical menopause. I was scheduled for surgery to have my port replaced when the routine urine test came back positive. My husband and I laughed because there was just no way. A sonogram confirmed the pregnancy was already into the second trimester. From that point it was a race to see as many specialists as we could to try to determine if it was safe to continue the pregnancy. There was very little information to go on, but ultimately, we decided to continue. It was a difficult pregnancy for me and the baby. There were close calls, hospitalizations, and ultimately my daughter was born one month premature and weighed only 4 pounds 12 ounces. She spent two weeks in NICU because she had trouble eating and digesting. She is now a happy, healthy, and delightful little girl, and the light of our lives.
Through all of this my husband and family stand by my side, giving me encouragement and keeping my spirits up. I participate in online breast cancer support groups to help others as well as myself. Over the course of the last ten years I have helped men and women in the initial stages of diagnosis and had the honor to bear witness to people in the final stage of their lives. It hope to use my story to reach more people, to warn them about the risk of metastatic cancer, which receives very little attention and funding despite the numbers of men and women dying each year. I especially hope to reach young women who are too often dismissed and misdiagnosed as I most likely was in the beginning.