Teller County, Colorado
My cancer journey began July 4, 2009, when I got a call from a California ER that my elderly father was there and had a tumor the size of a grapefruit in the middle of his chest, lung cancer.
He lived alone and being an only child I flew out to take care of him immediately. They gave him 4-6 months to live. I learned quite a bit about cancer for the first time, taking him to many appointments, palliative radiation therapy, getting him on hospice and arranging his meds and oxygen. I regularly took him to his most favorite activity: lunch at the “men’s” table at the Senior Center with all his buddies.
Of the 8 men who shared his table, 4 of their wives had died of breast cancer. I listened to their sad and often tearful stories of losing their wives to this horrible disease and thought, thank goodness I have no risk factors for breast cancer!!
My doctors started me on mammograms at age 38 because of my dense lumpy breasts. I have worked in the health care field for 35 years and thought I was doing all the right things.
I came home from California a couple of times to see my family and do appointments, the most important one October 2009 when I came home to have my annual mammogram. It came out perfect, read digitally and by 2 radiologists. The first part of January 2010, I noticed my left breast had a hardness to it and began to look larger. Then it started to turn red. Knowing I had just had a mammogram 2 months before I assumed it was a cyst, or mastitis and ignored it for a couple of weeks. But as my breast continued to change rapidly and become painful, I made myself an appointment at a breast center in California. I wasn’t the least bit worried. But the staff seemed alarmed, doing a mammogram (but I just had one!), telling me I had a large lesion, and lymph nodes glowing in my axillary area too. I immediately had several biopsies, and the doctor said, “If I were you, I would call your husband and have him fly out here ASAP.” It was Feb 2, 2010, my father’s 87th and last birthday. My husband flew out the next day and I got the diagnosis of Invasive Ductal Carcinoma with a 3cm lesion and positive axillary lymph nodes.
I referred myself to the City of Hope and got in the next week. I was there for 10 hours, seeing multiple doctors, having scans and blood work. The physician who is the head of the breast cancer center came in to see me and said I had inflammatory breast cancer stage IIIB, and I would get a port inserted in 3 days and begin chemo next week. And so, my journey with the deadliest form of breast cancer began and continues to this day. Only 1-3% of all breast cancers are IBC. It is the most aggressive form of breast cancer, has very high chances of recurrence and the worst survival rate (5 year survival is 40%). You are always diagnosed at stage IIIB or IV when it is discovered. It does not always present with a lump and does not show up on a mammogram.
My treatment was 18 weeks in a row of Taxol, Carboplatin and Herceptin, followed by a radical modified mastectomy with total lymph node dissection. There are no choices for compromise in IBC; aggressive therapy is essential if you want to survive this aggressive disease. I was hospitalized twice with sepsis from my port, had surgery to have my port removed and another later to put another one in. I also had several blood transfusions. My pathology report showed 8 of 12 lymph nodes still positive (even after all that chemo) and my original tumor to be 6.5 cm, the size of a lemon. They also decided I probably was not Her2 positive since I had such a poor response.
Reconstruction was not recommended immediately because the radiation oncologist wanted to begin ASAP and not have any foreign material or chance of infection in the way of my 33 sessions of radiation therapy. I finished radiation in October and have been taking Femara since I am ER/PR +.
I am thrilled to have been chosen by Susan G. Komen for the Cure to share my story that there is ANOTHER kind of breast cancer. Public awareness is the IBC Research Foundation’s primary goal, and I will do my best to get this message out. Despite 2010 being the worse year of my life, many blessings, humor and positive experiences have also happened. Let’s all work together to find a cure!