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May 21, 2018 01:39PM
May 21, 2018 01:41PM
Hi Calandra2 & Alicec138:
My name is Julie and I share your rare ACC of the Breast diagnosis and want to let you know you are not alone!
Thought I would share my story/journey:
I am 50 years old living in a Northwest Suburb of Chicago in Illinois. I have been married to my high school sweetheart for 30 years and have two adult sons, 25 and 23 years old. My oldest just got married in November and I can't wait to be a Grandma! I work as an Elementary School Secretary and have for the past 19 years.
I've always had lumpy, very dense breasts and during my monthly cycles my breasts would often seem more lumpy. I had my first Mammo (the one you have when you've reached the magic age of 40) in 2007 or 2008 - normal reading. But a consistent painful palpable lump brought me to my Internist in August of 2012 who sent me for a Mammogram. I had also developed a breast dimple (which I now know is a warning sign but at the time thought my body was just "aging"). No mass was seen on this Mammogram so an Ultrasound was ordered. Everyone could feel the lump so it was strange to not see it conclusively even on the Ultrasound. A punch biopsy was performed the next day. Pathology came back that it was a "Sclerosing papillary lesion" but the type they suggested removing (good, cause it was painful!) A lumpectomy was scheduled. It was the pathology that came from the lumpectomy that confirmed I had our rare cancer of the breast - Adenoid Cystic Carcinoma and, they didn't get clear margins. At this point I was given two choices, either perform another Lumpectomy or have a full unilateral Mastectomy. If I had gone the lumpectomy route I would have definitely had to have Radiation (having the Mastectomy meant possibly no radiation). My husband and I decided that a Mastectomy would hopefully get the entire mass and achieve clean margins. I had a unilateral nipple-sparing Mastectomy in October of 2012 (I was 45 years old). They ended up removing all the breast tissue which included a 5 cm Adenoid Cystic Carcinoma tumor and four lymph nodes (which were all clear). They claim they did get good clean margins. A tissue expander was placed during the same surgery by my plastic surgeon. In February of 2013 I had the first of two reconstructive surgeries. The tissue expander was removed and a silicone-gel implant was placed as well as my other breast lifted (to achieve symmetry). I ended up having to also have a revision to the recon (in July of 2013) because the plastic surgeon went too big on the implant (ended up going down 50 cc in its replacement)! I call it my "Foob". Following my Mastectomy my Medical Oncologist sent me to a Radiology Oncologist for third opinion on Radiation. Based on all reports, they decided there was no need for Radiation. In hindsight, I really wish I would have had them take both breasts to eliminate the risk/breading ground of "traditional breast cancer".
In 2014 I did develop another lump in my real breast. Because of my history, I was quickly sent back to the breast surgeon where she performed both an exam and an ultrasound right in her office. What appeared on the screen was promising (the fact that they could visually see this lump was promising to say the least) ... the lump appeared as a black roundish sac (black indicating that it was fluid filled) and she performed a fine needle aspiration. The fluid was not bloody and the breast lump almost completely disappeared--all signs that it was indeed just a cyst! I guess breast cysts are more common in premenopausal women (yep ... that's me). I also developed a lump last May (2017). It too was benign. I must remain vigilant with self-breast exams!
Moving forward, I am currently being seen every 6 months by my Breast Surgeon and yearly by my Medical Oncologist. I have a yearly 3D Mammo of my remaining real breast and every other year I have a Chest CT Scan. While I am my Oncologist's first and only patient with ACC, he has done his homework and I am happy with his current plan of follow up.
I was excited to just reach my 5-year Cancerversary!
Please feel free to reply or find me on Facebook (if you're there - Julie Schachtschneider). There is a Facebook Secret Group of ACCB (ACC Breast Warriors) that I would be happy to add you to ... it's a wonderful way to connect with more of us. We are a mighty group of 26!
I would be happy to answer any questions you guys might have or would be more than happy to share more of my story.
I look forward to communicating with you two!
8/29/2012 Lumpectomy: Left
9/4/2012, Left, 5cm, Grade 2, 0/3 nodes, ER-/PR-, HER2-
10/12/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left
10/12/2012 Reconstruction (left): Tissue expander placement
2/12/2013 Reconstruction (left)