Patient Supporters- Their Stories

I was struck by a cyclist in October 2017. I was walking and he struck me from behind and I was thrown forward onto the concrete sidewalk. The main impact was on my left breast. When I felt a lump in my breast in early April 2018, I thought it might be scar tissue from the bike accident. I ignored it for a week and then decided I had to find out what it was.

I saw my gynecologist the following day and then had a mammogram and an ultrasound the next week. They did a biopsy that same day and I found out it was cancer the next day. It happened very fast and it was terrifying. I had been totally healthy. I had no family history of cancer.

I met my surgeon within two days of diagnosis and my oncologist two days after that. Within a week I had an MRI, had a port placed for the chemotherapy infusions, and I began chemo.

Chemotherapy was very difficult for me. I had 18 weeks of very rough chemotherapy, a lumpectomy and an axillary node dissection of 12 lymph nodes. Thirty-three days of wide-field radiation followed surgery.

During chemo I had nausea and fatigue. I lost my appetite. Foods and smells made me nauseated. I felt depressed and anxious all of the time. I lost my hair and chose not to wear a wig because I found it to be very uncomfortable. As my hair started to thin out by the end of the first round of six chemos, I had my hairdresser shave my head. I wore cotton scarves because I had chemotherapy treatments during the summer months. Sometimes walking down the street was difficult for me because people would stare at me and know that I had cancer and was going through chemotherapy. I felt stigmatized.

The first ten days after a round of chemo was difficult physically. During those days I would sit on a park bench and try to walk at least a mile. The last ten days I felt more energetic and increased my walking in the park to 2-3 miles a day. I would also try to work with clients before the next round because those were the days when I felt more like myself again.

I was scared for surgery and my surgeon convinced me that I didn’t need a mastectomy, although initially I wanted one because I was so frightened by my diagnosis and knew so little about breast cancer and how it is treated today. My surgeon urged me to have a lumpectomy rather than a mastectomy because it is less invasive, there is a shorter recovery period and I was going to have to have radiation after surgery due to one positive lymph node in the mammary channel. I had genetic testing before chemotherapy and I found out that I don’t carry any of the breast cancer genes – neither BRCA 1 nor BRCA2. My surgeon tries to conserve the breast when she can and because I didn’t carry the genes, she felt that a lumpectomy would be appropriate.

I began radiation 5 weeks after surgery. It was grueling because it was every single day except for weekends. The act of lying in the same position in a cold room every day was uncomfortable and monotonous. But I made it through. My skin held up well and I barely blistered because I diligently applied cream to the radiated breast 3-5 times a day.

During and after radiation I continued with the adjuvant treatment of Herceptin and Perjeta and then my oncologist decided to switch me to TDM1 for a year after a trial released results showing that TDM1 had a 50% reduction in recurrences at the 3-year mark over Herceptin alone. TDM1 is Herceptin plus a chemotherapy agent called Emtansine. It has been used for metastatic HER2+ patients but is only just beginning to be used on early stage HER2+ patients this year. So, I am one of the first patients with early stage HER2+ breast cancer to receive TDM1 at the University of Chicago.

I am also taking Arimidex which is an estrogen suppressor given to post-menopausal women who had ER+/PR+ tumors. The 5% of the tumor that they found to be ER+/PR+ at pathology had a tubular morphology which is a slow growing kind of tumor but because Arimidex is available my doctor chose to put me on it for five years. I am tolerating it well with few side effects.

In April 2019, I had my first mammogram since diagnosis and there was no evidence of cancer. I will have an automated whole breast ultrasound in October 2019. So, going forward I will be monitored every six months, alternating between mammograms once a year and ultrasounds.

I encourage other women to learn everything you can about your type of breast cancer. Read the results of trials if they apply to you. Don’t be afraid to advocate for yourself. If you don’t agree with something your doctor proposes, speak up. If you are suffering during Chemotherapy, post-surgery, or during and after radiation, don’t weather it in silence. I was never afraid to speak up about discomfort, pain or the anxiety I was feeling. My doctors were sympathetic and helped me get through the treatments. For example, during chemotherapy I suffered through hemorrhoids and I spoke up and got treatment. During radiation I asked my radiation oncologist to be aggressive with the treatment because I still had a node in my mammary channel that wasn’t surgically removed and I wanted to make sure it was obliterated by the radiation treatments. I didn’t flinch when my oncologist proposed TDM1 after I read about the trial and its encouraging results. My husband and I have been married 27 years and have twin 22-year old sons and I intend to watch them live their lives so I want every treatment and test available to monitor my progress and keep me cancer free.

I feel research is important so that we can make breast cancer a disease that you live with and don’t die from. I feel fortunate that I found my cancer before it became metastatic and that I have very smart and aggressive doctors who are treating me with cutting edge protocols based on the most current research. The more research that can be done on breast cancer, the more women will live to tell their stories and help future generations of women who develop breast cancers. Because breast cancer is the most common cancer in women, we must find a way to eradicate it.