In May of 2003, I felt a sharp pain in the left Ovary area. At the completion of an Ultrasound, I had doctors in my room. I was told that I had either Ovarian Cancer or Uterine Cancer. A week later, I had a complete Hysterectomy. Thankfully, I was told that I did not have either of those cancers. I was sent to a Colorectal Surgeon. I received a second surgery in June of 2003 and I was told that my appendix was the primary source of my cancer. The tumor on my appendix had been laying on my right ovary and caused cancer to travel to the left ovary.
The surgeon removed the appendix, the ileum, and a foot of my colon. I was told that I had rare cancer called Carcinoid Cancer. The surgeon told my family that she thought she got all of my cancer. She referred me to the only Oncologist who knew about this kind of cancer. I was given Sandostatin. After three years, I asked my Oncologist if I could stop the injections. I never knew the benefits of them and I knew that the Colorectal surgeon told me that she got all of my cancer. In 2010, I woke up with a red rash on my face. I thought I was having an allergic reaction to a food. The Dermatologist told me it was Flushing and sent me back to the Oncologist and a lump was found in my breast. I was sent to a Woman’s Clinic. I was told that I had Infiltrating Ductal Carcinoma. I met with a Breast Surgeon and had a double Mastectomy. The left reconstructed breast became infected.
I wore a wound vac for a week and I eventually needed extended therapy in a Hyperbaric
chamber. Finally, I returned to the hospital for a skin graft to cover the infected part of my breast so I could start Chemotherapy. A miracle was given to me. While I was in the hospital, the breast surgeon called and she explained to me that she had my case reviewed by a panel of doctors. A pathologist, whom I never met, revealed that my Carcinoid Cancer had metastasized to my breast. No chemotherapy was needed!
That experience taught me the importance of being actively involved in the education of my
diagnosis and treatment. While I was told that it was rare for Carcinoid Cancer to metastasize to the breast, I am living proof, that It Can and Does occur. I learned to be forceful in my request for thorough pathology research. I learned to ask my physicians to clarify all of my biopsies, scans, blood work and even doctor conversations. I learned that many medical professionals are not familiar with Neuroendocrine Cancer, its diagnosis, or its treatment. When I was sent to the Woman’s Clinic, I was told that my lump did not look like breast cancer. I never questioned them, I never asked, what does it look like? I learned that I must be my own advocate!!
In 2003, I was so misinformed and not well educated about my diagnosis. Today in 2016, soon to be 2017, I am so very thankful, grateful, and sincerely appreciative to the expert Surgeons, Oncologists, Nurses, NET Foundations, NET Organizations, NET researchers, NET websites, Support Group Organizations, conference organizers, who have all dedicated their lives, sacrificed their time, to increase awareness in order to minimize the rate of misdiagnoses. Because of their dedication, we Zebras are all made more aware of all that is involved in being diagnosed as a Neuroendocrine Cancer Patient. We, Zebras, are all benefiting from the results of the ongoing cutting edge laboratory research and we are benefiting from the major breakthroughs in our treatment and care.
Throughout the past 13 years of living with NET, my support system consists of my faith, my family, my friends, and even my little Cocker Spaniel, Scarlett. These caregivers always supported my strong pursuits for researching and educating myself. They were so proud when in 2015, I accepted an offer to become the Co-leader of the Colorado Carcinoid Cancer Support Group (CCCSG). I have met so many wonderful people, patients, and caregivers. In Colorado, the support group meets quarterly to listen to stories, share experiences, help with questions, refer websites, Facebook pages, and blogs. We have all found the strength to become better communicators. We have all shared stories that are heartwarming and extremely humbling. We have all learned not to focus on preventing cancer from returning but, focus on “celebrating our lives and relishing TODAY, savoring each and every moment.”