Carol's Story

A breast surgeon has followed me since 2001 when my mother was diagnosed with breast cancer. She had her bilateral mastectomy in January of 2002. In August of 2004 I found a change in my left breast, my nipple was inverting and I had a discharge. I saw my oncologist in September of 2004, at which time I was told that they never saw anything like this however I did not need to worry. In January I had my annual mammography and sonogram all of which came back normal. In October I went back to the oncologist now complaining that the discharge had a foul odor. He then took a sample of the discharge and sent to a lab to be examined. He explained that if the pathology came back negative then I would need a biopsy and removal of a duct. I was scheduled for a surgical biopsy at St. Francis Hospital on November 29, 2005. In the midst of all of this my son had to have and emergency appendectomy on November 27th. I guess it was better to worry about my son than myself.

The results of the biopsy were that I had pre cancer (atypical cells) and was sent to a medical oncologist. His treatment plan was for me to go on the drug Tamoxifen. After reading the side affects of the drug I was reluctant to go on this drug as it can cause other types of cancer. At this time I decided to go to Sloan Kettering for more advice regarding possible new drugs. My pathology slides were sent to Sloan and I was prepared with a notebook filled with questions. At my visit the doctor came in took out a diagram of a breast wrote atypical ductal hyperplasia on it, then crossed it out and wrote ductal carcinoma. She then proceeded to tell me that I didn’t have atypical hyperplasia that I had ductal carcinoma and needed further testing to determine how much of the cancer was in my breast. The next thing I heard was mastectomy and the tears filled my eyes. The doctor then said, “Oh I’m sorry, didn’t your doctor explain this to you?” I said no he didn’t know I was coming for a second opinion. At some point she acknowledged my notebook of questions. She also excused herself and left the room to check as to why the pathologist didn’t inform my doctor of the change of diagnosis. When she came back she explained that my oncologist should have received the new diagnosis she also told me I should be happy that I would have one breast. I didn’t quite feel that way.

Upon arriving home I called my oncologist and was told he wasn’t available to speak to. This was a Thursday. I continued to try him by phone the entire weekend. On Monday I had an appointment with him. I had such mixed feelings, I didn’t know if I could trust him. At my visit he seemed sincerely upset at the new diagnosis but informed me that the two diagnoses can be could be misunderstood. He apologized that his staff didn’t inform him of my calls and proceeded to give me his beeper number and his secretary’s direct number. I decided to continue my treatment with him, for some odd reason I was comfortable with him and did not want to change doctors at this point. I made my decision to remove both breasts even though the MRI indicated I only had cancer in one breast. The oncologist didn’t try to change my mind however; he didn’t seem to think I needed to remove both breasts. He recommended me to two plastic surgeons on my request. The plastic surgeon I chose felt removing both breasts was the safest way to go. During two different telephone conversations with the oncologist I realized that he had me confused with another patient. When I confronted him with this he apologized. All of this created much confusion and fear however I stayed with him.

On March 28, 2006 I had bilateral mastectomy and the start of reconstruction. I was in surgery about eight and a half hours. At my post operative visit with the oncologist I was informed that I made the best choice having both breasts removed because they had found cancer in both breasts. At that point I became terribly upset and my doctor couldn’t understand why. He just didn’t understand. Yes, I was happy I made the right choice but he never helped me make that choice. I did that because I didn’t want Radiation treatments and I didn’t want to repeat all this at a later date. I wanted the quickest and easiest way out. I didn’t want my husband and children to be burdened with me being sick. Having both breasts removed brings a roller coaster of feelings. These feelings change daily. One minute you’re happy to be alive the next you feel guilt. My reconstruction took four separate surgeries. In clothes I look great without clothes is another story. The scars are a constant reminder. But yes I’m alive. It’s difficult to forget because most of the day I feel the implants, they are hard and not normal. I was a stomach sleeper not anymore. If I end up on my stomach I wake up in pain. Please understand I am not complaining just stating the facts. By the way shortly after my mastectomy surgery my oncologist moved to California and by the way never told me, I found out when the secretary called to confirm my appointment and to inform me that I would be seeing a new doctor. My plastic surgeon and his staff have been compassionate and understanding during all my treatment. Throughout all my surgeries I never considered myself sick. I truly believe that is what helped me and my family get through all this difficult time. I have met so many wonderful friends due to my breast cancer and for this I am so grateful.

If I were a spokesperson for surviving breast cancer I would tell everyone to explore all options, get more than one opinion, go with your heart, and most of all pray. Prayer is so powerful.