My story begins years ago, in 1989, when I found a smallish lump in my left breast. My husband's family had a lot of cancer, and I just didn't want to believe it might be cancer, so I went into immediate and complete denial, not seeking medical help or advice of any kind. I convinced myself it was just a fibroid cyst, and we'll never know if it was or not. It did seem to fit the profile, and so for 10 years I carried on. But in '99 the "cyst" started changing and enlarging, and I finally woke up and got myself to a doctor, thanks to my husband. After blood work and lung/liver/bone scans showed no apparent spread, which seemed pretty miraculous, I was scheduled for a biopsy with immediate mastectomy if the biopsy showed cancer. It did; Stage III, ER/PR negative, and thanks to my surgeon I was also tested for Her2nue.
At the time it didn't mean much to me that I was Her2nue 3+, but my surgeon told me I might be eligible later for treatment with a new drug called Herceptin. By this time I was pretty scared, but also ready to fight, and I started treatment right away; six months of chemo, Adriamycin/Cytoxin followed by Taxol , and 6 weeks of radiation. I was fine for six months, and then began showing symptoms of recurrence. My oncologist was expecting this, and even though scans came back negative, we were sure the cancer was back as I had enlarged nodes in my neck and collarbone, a strange rash over my collarbone (all of this on my left side) and enlarged nodes under my right arm with my right breast also swollen and tender. I also had several small peppercorn sized bumps in the scar area. My surgeon did a biopsy of the neck node and also the rash, and both confirmed the original cancer was back. So
I started weekly treatments with Herceptin/ Navelbine on January 29, 2001 .
Within 3 days, I was seeing improvement: lymph nodes smaller, pain and stiffness in left shoulder diminishing, right armpit area better; by the following week the bumps in my scar were almost gone, and it just got better and better. After 6 months, we dropped the Navelbine , and I continued with Herceptin alone for another 6 months. My oncologist, being cautious but optimistic, said I could consider myself to be in remission, conditioned by the fact that the remission was being maintained by Herceptin.
On April 1 of 2002 I received my first triple dose of Herceptin. I had surgery 10 days later, a mastectomy of my right breast. My mammograms had shown suspicious calcifications, and given the involvement during my recurrence, I didn't want to take any chances. There were no complications and I had my next Herceptin dose 4 weeks later, and continued receiving Herceptin every three weeks until May of 2004, when it was determined by PET that I was experiencing a second recurrence to the same lymph nodes that became enlarged during the first recurrence. I immediately started weekly Navelbine /Herceptin, and again had a very good response. Within a few months the nodes had shrunk, and after 6 months I'm back on weekly maintenance Herceptin, and thanking my lucky stars! I'm glad I have "reactive" nodes, and a good and kind doctor who listens when I have concerns.
Her2 Support Group has been a guiding light on a sometimes very dark road. Thanks to the knowledge I've gained here, I am currently hoping to be enrolled in the Herceptin/Vaccine clinical trial at University of Washington in Seattle . Thanks to the support gained here, I know I'm not alone, there's always someone ready to listen and help me with my fears and concerns. And thanks to the hope this site provides, I live each day with joy and the belief that I will survive.
Lolly and husband Frank on their 30 th Wedding Anniversary
