In 1988, I developed a lump in my right breast. I was in my mid twenties and while I pointed it out to my doctors -- no one was alarmed.
Finally in 1991, I started to have some pain associated and I decided to take it more seriously and sought the consultation of a breast surgeon. At my behest, he took the lump out and the biopsy read "dense fibrous tissue".
Many people have fiber cystic tissue, but the lumps in my breasts were different shapes, hard and many. Size would change depending on stress, menstrual cycle and caffeine consumption and sometimes they felt tender, but most of the time I didn't feel them!
In the following years, my gynecologists referred me to breast oncologists for my check ups, because the lumps are too many and the tissue is so unclear, they did not want the liability.
I started having mammograms when I was 34, and the comment was my “mammograms look like a snow storm!” I started to ask "what are we looking for?" and no one had the answer.
In 2004, I developed another lump on the left side, this time much more sensitive, and I decided to talk to a friend who had just gone through breast cancer treatment. She recommended that I see Dr. Shawna Willey at Georgetown’s Betty Ourisman Breast Cancer Center.
My experience at this center has been the best care I could ask for. Flanked by physician’s assistant Minna Manola, Dr. Willey took her time to feel, look and discuss my history and current lifestyle and looked at my past and present mammograms.
She and Minna worked hand in glove. She requested a mammogram and ultrasound. Within her office is all the equipment to offer patients a seamless appointment. I simply walked down a hallway to have my mammogram and ultrasound and returned back to my consultation room.
Within minutes, Dr. Willey appeared and looked at the scans on a computer and said the same thing everyone had: “It’s a snow storm in there!”
Dr. Willey felt she was not comfortable not to look at the tissue directly, so we scheduled surgery. I asked to be awake (a local anesthesia) and she said “Great”! But we made a determination that if anything came up that needed aggressive action, she would put my lights out and surgery would begin.
Georgetown is a teaching hospital, which means that students assist in the surgery. In the very capable hands of Dr. Willey, I listened to the conversation about what they saw. Dr. Willey removed the cyst and explained that the type of tissue was unusual, that most cysts were not this fibrous and it was not cancerous or even precancerous. To be awake and listening to the conversation was very assuring to me, giving me even more confidence in my doctor!
My ob/gyn made the firm decision that my annual mammograms needed to be followed by Dr. Willey’s office. Normally, women go to a mammography center, not a cancer clinic, for follow up, but we determined that Dr. Willey’s office was exactly the care it would take to watch my lumpy condition! Minna Manola started a clinic for Georgetown patients like me who have difficult tissue and I've been doing my annual mammograms religiously!
But exactly what was my condition? This year I met with Dr. Erini Marariou, who handles ultrasound, and she said, “ You have a condition known as Diabetic Mastopathy.” My problem has a name? She wrote it down for me and said research it.
Amoung the results of my search, I landed this information:
Diabetic Mastopathy is an uncommon condition that causes masses to develop in the breasts. Most women are pre-menopausal and have had type 1 diabetes for many years or an autoimmune disorder such as thyroid disease. Evidence suggests that the cause is probably due to many factors. Some more resources can be found here:
Since reading and discussing this condition, I’m more convinced that care needs to be aggressive. Annual mammograms are not enough! This condition does leave you vulnerable and a doctor needs to be on top of it.
I’m not worried about cancer for myself, as my factors seem pretty small, but since my body is sometimes my worst enemy I need to be aware, and informed.
Thank you to everyone at Betty Ourisman Breast Cancer Center for their amazing care and professionalism!