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Adenoid Cystic Carcinoma - Breast

© by Mary D - 9/23/2007

Join Mary on our Rare Breast Cancer Support Forums

I’ve had a long history of fibrocystic disease, very dense breasts, and many lumps over the past 18 years.  This led me to no longer check my breasts, because I knew they were lumpy. With my annual mammogram I was invariably given sonograms to check out the various lumps. My first lump was aspirated in 1989. A second in my left breast in July of 1995. At that time the mammogram showed lots of cysts.

I had started taking hormone replacement therapy in the mid ‘80s and took it regularly for over 20 years. In 1995 I had many tumors in my uterus which my doctor told me were borderline malignant. I was still taking Estrace and 10 mgs. of Progesterone daily. In October 1995, my doctor aspirated another lump in my left breast with 19000 cc's of fluid. It was biopsied and found to be benign.

1996:  I was sent to a surgical oncologist who told me my mammogram showed lots of cysts in clusters but was still normal. Hormonal changes, he said. He said he could aspirate hundreds of lumps but it wasn’t really necessary. For the first time, I had lumps in both breasts.

February of 1997:  I had a hysterectomy. I had heavy bleeding for some time and my gynecologist said there were definitely tumors and it clearly wasn’t normal. At the same time, the mammogram showed increasing tumors in both breasts. I still had hot flashes. My doctor told me that before the hysterectomy my estrogen level was abnormally high because of the condition of my uterus and that I would probably stay on 1 mg. of Estrace (which he said was high) for another year or two.

My annual mammograms and ultrasounds continued to show many cysts in both breasts –more in the left breast but a particularly large one in the right. There was no sign of cancer.

1998:  At my annual physical, my doctor examined my breasts and ordered an ASAP mammogram and sonogram. There were numerous fluid filled cysts on both sides and a particularly large one on the right side. One in the left had grown since the previous year. Both my internist and gynecologist said they’ll definitely want to biopsy that. It’s more than a cyst. In April of 1998, they did a surgical biopsy of both breasts to take out the solid masses. They turned out to be benign.

January of 2000:  My mammogram showed the left breast to be extremely lumpy. The half hour session lasted 3 hours, followed by sonograms. All were cysts with the exception of a 2 cm lump in the lower left breast. They could feel it but couldn’t see it. Also a group of calcifications had grown since the last mammogram. They wanted to do a core biopsy to check these out.

February of 2000:  They did a stereotactic biopsy of the small string of calcifications in the left breast. The pathologist found a little bit of tissue that was abnormal but nothing he considered cancerous or precancerous.

February 2001:  My doctor reported I had bilateral significant mammary dysplasia (abnormal precancerous tissue growth). In the left breast were 2 cysts and 2 more with irregular edges. The ultrasound checked out all areas & pronounced them OK.

March 2002:  My annual mammogram turned into 2 hours of bilateral diagnostic pictures. The left breast they did repeatedly with additional magnification. The ultrasound doctor (whom I knew well by this point) came in to tell me I had a “very complicated case.” She told me I had calcifications and “powder” (small specs of calcifications) in 3 areas of the left breast that needed to be biopsied. “Powder” couldn’t be seen by earlier equipment. It’s typical of interductal slow growing carcinoma.

She gave me three choices – (A) a surgical biopsy where they would cut out all 3 areas, (B) a steriotactic biopsy or (C) unconventional – an MRI that shows invasive cancer.

I had read that (B) stereotactic misses some cancers. And (B) wouldn’t catch the “powder.” The radiologist had also told me (C) wouldn’t show a cancer that was not invasive. So I decided on (A) -- another surgical biopsy.

I went into surgery April 28, 2002 with 3 wires with flags sticking out of my left breast. Each indicated a potential cancer site in the breast. As it turned out, it was cancer -- in the site of the “powder” -- deep in the breast with no lump I could feel.

Always curious, I asked for a copy of the pathology report. Only then did I learn it was invasive ductal carcinoma that happened to be Adenoid Cystic Carcinoma. And only by investigating and looking it up on the internet did I find it was a rare cancer, found in only .001% of all breast cancers. Discovering Sharon Lane, my lifesaver, at the time was the most helpful and wonderful discovery because she told me all she knew about it, including the fact that chemo was not effective and that wide margins were the most important deterrent for metastasis. Sharon was my voice of hope in the desert and I cannot tell you how much I appreciated her.

Armed with my new knowledge, I set about to educate my doctors – none of whom knew anything about breast ACC. I looked into all types of treatment, including lumpectomy, mastectomy, reconstruction etc.

My quarterback doctor said to me, “I’m not surprised at cancer. We knew it was coming. Will definitely have to go in again for another surgery because the cancer was through the inked margins. Will have to take the rest of it out and the lymph nodes. Because of your breasts many would recommend a double mastectomy. Fibrocystic disease does not cause cancer. Just makes it hard to see the cancer. This is a surgical problem. You have to have it taken out first and then you go from there. Then either radiation or chemo or both. “

I was in shock. I had such an intensive surgery, I thought it was all over. I had no idea there would be more. But I did leave the office commenting on his double mastectomy recommendation with a “No way!” (My research had shown statistics were no better for mastectomies than lumpectomies.)

Before the next surgery, I FAXED my surgical oncologist 13 pages of information on ACCB, including that it didn’t travel through the lymph nodes and so please don’t take any out. Also stressed very strongly to make sure to take wide margins around the cancer.

May 28, 2002:  The surgeon did the second surgery – a lumpectomy. He said the cancer was deep in the breast. He took out 13 cm. clear to the bone, as well as the fascia (the lining between the breast and chest wall by the rib cage) and 6 lymph nodes. The nodes, of course, were clear but I guess he wanted to be sure.

I had 6 weeks of radiation with no problems. But after a while I began to experience a lot of pain in my left breast. In January 2003, it was determined that I had mastitis in that same left breast and they began to look at potential Inflammatory Carcinoma. Had new mammograms, sonogram, chest x-ray and blood work. My surgical oncologist aspirated heavy pus out of a cyst in the left breast and sent it to pathology. In late February 2003, did another surgical excisional biopsy to check for potential Inflammatory Carcinoma.

He took out the infected area.. and there was no cancer!

For the next year had constant pain and throbbing in the left breast but follow-ups showed nothing negative. Now in September of 2007, the pain has gone away.

I’ve had wonderful doctors and medical care here at Providence Medical Center in Portland, Oregon. They have a fine reputation for cancer treatment here. Don’t think they’ve had more than a couple of cases of ACC, but they’re very good at following up and have excellent doctors. I no longer have such lumpy breasts now that I don’t take Estrogen or Progesterin. I DO still have terrible hot flashes but those I’ll probably have forever. Know my cancer was not caused by that because it’s estrogen and progesterin negative, but am sure it contributed to my lumpy breasts because they’re not so lumpy anymore.

No longer think very much about my cancer. Am careful to get annual mammograms and chest x-rays, but haven’t had to have sonograms the past two years, and that is something new for me!

Have been very lucky and to date very healthy. Have had no recurrences or metastasis.

Life at the moment is very good! If I can help anyone or share information, would be happy to do so! We can get past it!