What Is Atypical Ductal Hyperplasia and Why Should I Care?

I freely admit that I have not been known to take care of my health. I had skipped many of my recent ob/gyn exams and even though I am 43, I hadn't had a mammogram yet. 2009 was going to be a different year for me in more ways than I had ever anticipated.

When I saw the doctor, she advised me to get my mammogram, which I promptly made my appointment to have done ASAP. Slightly anxious, I recalled all of those comments made in the past where I only half listened because, well - I wasn't over 40 and didn't really care. However, the comments like "they squish you like a pancake" never escaped my mind.

On Monday, the whole mammogram exam took less than 1/2 hour and I was on my home thinking, "That wasn't so bad!" Two days later I received a call asking me to return because they needed to take some more images. I was back on Friday where I sat for over 3 hours after shuffling from various mammogram rooms and waiting rooms, including the "diagnostic waiting room." All the while no one is saying anything to me. 12 images later and I was thinking crepe and not pancake, the radiologist looked at the images and said she saw "calcifications" in both breasts. One side was not an issue as they were scattered, but the other side were harder to see and clustered. Her advice was to have a stereotactic breast biopsy. Not being a huge fan of hospitals, I decided I would rather know than worry for 6 months. An appointment was scheduled for a few days later and I went home.

Tuesday morning I arrived at the breast center and was ushered into a room with a large table. The table has a hole in it where you are situated with the breast in question centered through it. The table is raised up and all of the work is done beneath the table. Think of when you take your car to the shop and they can stand up instead of laying on the ground, but this is in the doctor's office or hospital. A few images are taken to locate the area in question and then the radiologist numbs the area with a local anesthetic. They hold you in place and the needle enters the breast via a small incision made after the breast is numb. The radiologist used the guided imagery to withdraw tissue samples from the area, which are collected. These samples are x-rayed to see if the calcifications are present. For me, a total of around 12 samples were taken. A marker is then inserted into the area where the samples were drawn. This is because the scar tissue that is left behind won't be questioned in future mammograms, but also because if surgery is necessary they have a road map to follow by using the marker.

Once I was allowed off the table, I asked to see the equipment since it appeared they really didn't want me to look at before the procedure. I suggest if you are squeamish to not look at it before or after because it could scare you. The procedure itself did not hurt nor did the local anesthetic. I was told that what is the hardest for most women is having to stay completely still throughout the procedure. A couple of steri-strips, a compression bandage, and an ice pack and I was on my way home. The radiologist informed me that I would get a call the next afternoon. I asked the tech why was this so important if this was only my first mammogram. She told me that the calcifications could sometimes be an indication of early stage cancer. Wow! Talk about completely flooring me.

When I got home, I immediately went to work trying to find out about what had just happened to me. I was angry at myself for not questioning anything and believing that this was normal. What I learned is that calcifications are divided into two categories: macro- and micro-calcifications. "Macrocalcifications are large calcium deposits often caused by aging. These are usually not cancer. Microcalcifications are tiny specks of calcium that may be found in an area of rapidly dividing cells. If they are found grouped together in a certain way, it may be a sign of cancer." (www.cancer.gov)

By reading this, I could determine that what had were microcalcifications. However, there was little to nothing regarding possible outcomes of the biopsy. Here are what they could be:

"Atypical Ductal Hyperplasia (ADH) or Lobular Carcinoma In Situ (LCIS):
ADH and LCIS are not cancer. However, having ADH or LCIS in one breast does mean that you have a higher risk of getting cancer in either breast.

Cancer Cells Found in the Lining of the Ducts (Ductal Carcinoma In Situ or DCIS)
DCIS is a condition in which cancer cells are only found inside the lining of a breast duct. The abnormal cells have not spread outside the duct to the surrounding breast tissue. Therefore, most women with DCIS are cured with treatment. However, if not treated, DCIS sometimes spreads to other parts of the breast (also called invasive breast cancer). " (www.cancer.gov)

My choices then were not cancer, but higher risk of getting cancer in either breast or cancer. I didn't like how that sounded and I still don't. I waited all afternoon and finally received the call. She was pleased to report that it wasn't cancer, but it was in fact atypical ductal hyperplasia and she thought I should see a breast surgeon.

How did I go my entire life following what had been drilled into my head about BSE's (breast self exams) and lumps and yet, this was not a lump. There would have been no way to ever see this but for the mammogram. Prior to the initial mammogram they did a family history and yes, breast cancer does run on my father's side of the family, but there are women every year diagnosed with breast cancer who have no family history. I cannot wrap my head around the idea that no pain, no lump, no issues could still mean an outcome that I am not in the slightest bit happy about hearing.

What I do know is that calcifications are common in women. This cluster of calcifications is an abnormality and may eventually become cancerous, but in how many years? Do I allow them to do a lumpectomy to remove the suspicious area? Do I consider tamoxifen, a drug often prescribed to breast cancer patients? Do I consider BRCA gene testing? (A woman's risk of breast or ovarian cancer is higher if there are changes in the BRCA1 or BRCA2 gene.) Or do I completely go off the deep end and consider a double mastectomy? Avoid all of the constant worry and be done with it once and for all.

I have an appointment with a breast surgeon (a surgical oncologist) next week. After speaking with my mother-in-law, a breast cancer survivor herself, I am going to wait on freaking out unnecessarily. My only wish and the only reason I decided to write this was because I am so angry at all of the women out there before me who never mentioned any of this to anyone. How is it possible that I have never heard of this and most people I know haven't either? Why should we be ashamed of our breasts and our bodies? Some might say that I should be happy that I didn't get a diagnosis of cancer. I didn't, but I didn't get anything definitive that say that I won't get it in the future either. Women with atypical hyperplasia have about four times the risk of getting breast cancer as opposed to women with usual hyperplasia who have two times the risk. (ww5.komen.org)

If anyone reads this and cares at all, first please get a mammogram. Then don't rely solely on self exams. Make sure you learn about your family history and who has had cancer as this will help you and your doctor. Educate yourself as to the various diagnostic tools used in breast health such as mammograms, ultrasound, and biopsy. Trust your gut instincts and ask questions. Always get a second opinion and remember you are in a partnership with your healthcare provider. If you get a bad vibe or don't like how you are spoken to, find another doctor. It's your body and you get to decide what happens to it and when. Lastly, talk your sisters, daughters, nieces, friends, and any woman you know about good breast health. I think that we are our own enemies -- why won't we tell each other about things like this? We could offer support, love, and most importantly, compassion.

As for me, I hope to offer updates and information to anyone who might be reading this because I plan to be around for a very long time.