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Adenoid Cystic Carcinoma - Breast - Diagnosis & Surgeries

My Diagnosis  by Sharon Lane on 2/25/2005

Join Sharon on our Adenoid Cystic Carcinoma of the Breast Support Forums

My name is Sharon Lane.  I am the author of this website and an adenoid cystic carcinoma of the breast survivor.  I wanted to share the clinical nature of my personal cancer diagnosis, hoping that it will help others with a similar diagnosis.  My official diagnosis date was September 1998, but keep in mind, when you read the following, that I felt the painful lump myself since early 1993:

I had a very long period of several failed attempts to properly diagnose my lump:

April 1993 - I felt a painful lump on my right breast and after my primary care physician could not feel it, he referred me to a breast specialist in our area. She could not feel the lump and a mammogram came back stating "nodular pattern to the residual glandular tissue".  Routine one year follow-up was suggested.

October 1994 - Routine mammogram state "There is a new area of increased density in the right breast in the upper outer quadrant which measures approximately 1 cm. in diameter.  It has a somewhat spiculated apprearance that was not present on previous exam,.  This is suspicious of carcinoma and biopsy is recommended."   I was sent back to a surgeon who for biopsy.  He tried to use a needle guided imaging system to get a sample, but was unable to guide it  through to get this a biopsy.  They sent me home to wait for the next mammogram!

August 1995 - Breast specialist could see the mass on mammo - "An ill-defined density is seen in the right breast centrally in the approximate 12:00 o'clock region which is not well seen ont he lateral view on our exam today". They did an ultrasound, followed by a 14 guage core stereotactic biopsy. Biopsy pathology showed "no significant pathology.  They recommended right breast follow-up in six months.At this point, the lump was causing me repeated discomfort and pain.

October 1995 - Routine bilateral mammogram was done that showed "no evidence of carcinoma". (how they can tell this from a mammogram eludes me!)

February 1996 - Went for breast exam today and they could finally palpate (feel) the illusive lump. I was told during this exam that finding breast cancer early would help me to survive it. Scary stuff! Was sent in for a mammo and ultrasound - "benign stable mammogram". This is getting way past frustrating and nerve-wracking at this point.

July 1996 - February 1998 - Mammogram clearly showed a growing lump and breast specialist was able to feel the lump enough to try getting an FNA (fine needle aspiration) sample - "malignant tumore cells are not identified - no recommendation". I started having 6 month mammos at the breast specialist's facility. An ultrasound was also done. Each time she would review them with me and I could watch the growth of my 'benign' tumor. And each time she would get an FNA sample that showed no malignancy.

Note: I have found out, since this time, that needle biopsies may not work well for solid tumors, such as AdCC of the breast. They have a tendency to 'pop' out of the way when the needle is quickly inserted into the breast. So, the needle is filled with surrounding breast tissue, not tissue from the lump itself. It is also questionable if an FNA sample would be a large enough sample to clearly show AdCC cells to a pathologist, since it is such a rare cancer.

I have also learned that mammograms are only as good as the technician talking them and the radiologist reading them.  Be careful who is doing yours.  Don't be afraid to ask for credentials!

August 1998 - Reviewed my mammo films with the breast specialist. I was clearly upset. She asked me why and I told her "This thing is growing appendages and even I know that this is not a good sign". I remember this as if it were yesterday. She told me I had several options and one of them was to voluntarily have it excised. I chose that option. I wanted this sucker out!

I was sent to a general surgeon who reviewed all my films and data and told me that this tumor was definitely benign, but if I insisted on having it taken out, he would do the surgery. Imagine his surprise when the results came in!

September 3 1998 - Had the surgery done under lidocaine in a same day surgery setting (my choice). I went home and waited for the report.

September 15, 1998 - Physicians Report

Final Diagnosis

Right breast, 3 o'clock, lumpectomy
1. Adenoid Cystic Carcinoma
2. Tumor involves the inked surgical margins.
3. Estrogen and pregesterone receptors are negative with appropriate controls.

Clinical History

Enlarging fibroadenoma by x-ray: 3:00 right breast.

Gross Description

The specimen is labeled 'breast lump', is received fresh and consists of one (1) oval fragment of fibro-adipose tissue measuring 2.5 x 2.1 x 1.0 cm. The surgical margins are inked black. The specimen is serially sectioned to reveal an oval, firm, white-beige nodule measuring 1.7 cm in maximal dimension. The specimen is erially sectioned and placed in cassettes labelled 'A through 'D'. A.S. x 4 white cassettes.

No. of Slides

1. Number of slides: 17

September 22, 1998 - Since the biopsy stated that the "tumor involves the inked surgical margins"; a repeat excision was done to remove the rest of the tumor. Same surgeon.  Repeat surgery was done under a local anesthetic so that the surgeon could get a sampling of the lymph nodes. I now know that this was unnecessary with this cancer.  It is extremely rare for this type of breast cancer to have lymph node involvement and it is not considered of prognostic value.  The surgeon did use an identifying internal stitch in case he needed to do further surgery.  Because of the amount of tissue taken, this surgery was classified as a partial mastectomy.  The surgical report follows.

October 1, 1998 - Physicians Report

Final Diagnosis

Breast, right at 3 o'clock, re-excision:
1. Residual adenoid cystic carcinoma, 0.9 cm x 0.6 cm
2. The carcinoma involves the inked superior surgical margin
3. The tumor is less than 0.1 cm from the inferior margin
4. Healing Biopsy cavity

Lymph Nodes, right axillary excision:
1. 11 lymph nodes with no evidence of maliganncy (0/11)

Clinical History

1. Re-excision right breast bx cavity from 3:00
2. Right axillary contents

Gross Description

(I) The specimen is labeled 're-excision right breast biopsy cavity from 3:00', is received fresh and consists of a 3.2 x 4.3 x 2.0 cm mass of yellow-red fibroadipose tissue with an overlying ellipse of skin measuring 3.0 x 0.7 cm.  Centrally located on the tan-pink skin is a well healed linear incision measuring 1.8 cm in length x less than 0.1 cm in width.  The specimen is received oriented and is inked as follows: superior - red, inferior = green, posterior - black.  The skin marks the anterior margin.  The specimen is serially sectioned from inferior to superior to reveal a 2.0 x 0.8 x 0.8 cm hemorrhagic biopsy cavity which is located 0.4 cm from the lateral and medial margins.  The cavity is surrounded by focally dispersed yellow-white, streaked areas.  The remaining breast tissue is composed of yellow lobulated adipose tissue with white, fibrous tissue.  The sepcimen is entirely submitted from inferior to superior in cassettes 'A' through 'F'.  A.S. x 6 white cassettes.

(II) The specimen is labeled 'right axillary contents', and consists of a 5.0 x 4.3 x 1.0 cm aggregate of red-yellow fibroadipose tissue.  Eleven (11) lymph nodes are isolated, ranging in size from 0.4 cm to 1.5 cm.  R.S. x 3 white cassettes.

No. of Slides

1. Number of slides: 9

October 16 - Since the second biopsy report stated that "the carcinoma involves the inked superior surgical margin", I had to make a decision on mastectomy or another excisional surgery.  I chose the latter because I had done research on this cancer and felt this would be a safe decision.  Same surgeon, done under lidocaine again (my choice).  By this time, the breast was traumatized from all the surgeries.  This was getting pretty uncomfortable.

October 26, 1998 - Physicians Report

Final Diagnosis

Right breast tissue, biopsy - healing previous biopsy site with five separate foci of residual adenoid cystic carcinoma, measuring less than 1.0 mm, 1.5 mm, 1.5 mm and 5.0 mm adjacent to organizing previous biopsy site, and less than 1.0 mm focus not associated with previous biopsy at 1.0 mm from the inked anterior margin (slide 'b-2').

Clinical History

** Please be careful when you ink because cavity is open **
1. long stitch - anterior
2. short stitch - towards nipple
3. long/short stitch - posteror

Gross Description

The specimen is labeled 'right breast tissue' , is received fresh, and consists of a 4.0 x 3.6 x 2.3 cm mass of yellow-red fibriadipose tissue.  Superior is inked red, anterior,blue, inferior black, posterior green,.  The specimen is serially sectioned from lateral to medial to reveal a 0.6 cm hemorrhagic biopsy cavity, within the suerior-anterior portion of the specimen.  The cavity is surrounded by a rim of firm, shite-gray tissue, which grossly touches the anterior margin.  The white rim of tisussue is focally surrounded by white-eyllow irregular areas.  The remaining breast is composed of yellow lobulated adipose tissue with streked white fibrous tissue,.  The specimen is entirely submitted from lateral to medial in cassetts 'A-G'.  A.S. x 12 white cassettes.

No. of Slides

1. Number of slides: 12

Now I was left with a treatment decision that was unprecedented.  No one had chosen to go through multiple excisional surgeries to remove this cancer.  It would have been normal to choose a mastectomy after the first failed surgical attempt.  I was treading new territory.  Join me in our Adenoid Cystic Carcinoma Support Forums to hear the rest of the story......

Take Care,  Sharon