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Adenoid Cystic Carcinoma - Breast

by Debbie - 09/10/2007

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My name is Debbie and I am 55 years old. On May 2, 2007, I received my third breast cancer diagnosis in less than one year. 

I have a history of bilateral cysts dating back to 1991 and had numerous aspirations through the years. In 2000, a mammogram showed micro-calcifications in my right breast. At first, the surgeon was diligent about watching this area; and then when things seemed to not change, I went back to yearly screening mammograms. 

We relocated to Florida in 2003, and in June 2006, I finally found a family doctor I was comfortable with. She sent me to an imaging center that was new to me and a very diligent radiologist insisted I needed a biopsy on my right breast. The diagnosis was ductal carcinoma in situ (DCIS). I had a simple mastectomy and immediate reconstruction. My surgeon wanted to see me every six months for follow-up care. 

In January of this year, I found a lump in my left breast near the nipple. I have had so many cysts in the left breast and assumed this was yet another one. My appointment with the surgeon was scheduled for February so I waited until then. She also thought it was a cyst and did a fine needle aspiration. It didn't aspirate like a simple cyst and she sent the specimen to a pathologist. He couldn't determine what it was from the small sample so on March 2, I had a lumpectomy. 

I didn't get the final diagnosis until March 13, because the pathologist sent slides to the University of Michigan for a second opinion. The lump was a benign, inflamed, hemorrhagic cyst, but at the edge of the tissue removed, they found the very rare adenoid cystic carcinoma of the breast(ACCB). My husband, my surgeon, and I were all in agreement that I should have another mastectomy. With my history, I didn't want to worry about what would be there at the next six month check-up. 

I again had a simple mastectomy with immediate reconstruction. She also did a sentinel node biopsy, just to be safe, even though ACCB rarely involves the lymph nodes. The report from the frozen section at the time of surgery was that the four sentinel nodes were negative. However, five days after surgery, the final path report indicated yet another cancer that no one even suspected was there. There were two small tumors that were invasive ductal carcinoma and two of the sentinel nodes were positive. 

My surgeon did not do an axillary node dissection at the time of the mastectomy because the preliminary report was that the nodes were negative. So I had a separate surgery to do this procedure. She removed sixteen nodes and they were all negative. I am scheduled to start chemotherapy soon but will not have to undergo radiation since no more nodes were positive. 

Those of you out there dealing with your diagnosis, please be diligent about your follow-up care. Also, follow your instincts (or gut feelings) about what is right for you. A lumpectomy would have been an appropriate procedure for my ACCB but then the other cancer might have been widespread before it was found. Incidentally, after the mastectomy, the pathologist didn't find any more ACCB. The surgeon had gotten all of it with the lumpectomy done for biopsy!