Tuesday, May 21, 2013

My Own Mastectomy Experience

Last week, Angelina Jolie's announcement of her preventive bilateral mastectomy and breast reconstruction, after finding out she carried the BRCA1 breast cancer gene, was met with mostly positive reaction. But some questioned whether this information was helpful or would just result in a surge of young women requesting genetic testing, which is not recommended for everyone and may result in unnecessary financial, emotional and possibly physical costs to pay.

I'm no stranger to controversial discussions around breast cancer. After my own mastectomy I came to understand that (my diagnosis) ductal carcinoma in situ (DCIS), can be a source of heated conversation for many people, particularly for DCIS patients and those women who have been diagnosed with invasive breast cancer.

DCIS, stage 0 breast cancer or "early" breast cancer, is the growth and spreading of abnormal cells in the breast ducts (the same ducts that carry breast milk from the lobe to the nipple). These abnormal cells have not yet moved into the surrounding breast tissue, making this a noninvasive cancer. That said, doctors can't tell which cases of DCIS will turn into invasive cancer. (According to this article from USNews.com there may be a higher risk "in the presence of necrosis (dead cells) and in younger women.") As a result, the treatment is similar to that for invasive cancer in that it may involve lumpectomy or mastectomy and possibly radiation. It is the grouping of noninvasive DCIS with invasive breast cancers that can make people uncomfortable and lead to some difficult conversations.

It wasn't (and still isn't) always easy to talk about my experience with DCIS but I share my story because it always leads to an interesting conversation about breast cancer, particularly breast cancer in young women. More young women are being diagnosed with breast cancer than you might expect. According to the Young Survival Coalition's website:

It is estimated that more than 250,000 women diagnosed with breast cancer at age 40 or younger are living in the U.S. today. More than 13,000 young women will be diagnosed this year. While breast cancer in young women accounts for a small percentage of all breast cancer cases, the impact of the disease is significant.
The Young Survival Coalition (YSC) is an organization of strong, generous, bright and beautiful ladies that exists to support, inform and empower women who have been diagnosed with breast cancer before the age of 40. The support group meetings I attended at the YSC helped me to prepare for my surgeries and helped me to put my own diagnosis into perspective. Talking about my experience lets me share this invaluable resource with others.

In my case, DCIS filled my entire left breast and I had a steady discharge of blood from my nipple and far too many years left for the DCIS to become invasive cancer (I was just 29 years old when I was diagnosed). All of the doctors I spoke with agreed that mastectomy was the appropriate treatment.

I had my mastectomy just a couple weeks after my 30th birthday. Like Angelina and many others who have had this surgery, I woke up with drains sticking out of my body and a skin expander placed where my breast had been. Unlike Angelina (whose article suggests she had a "nipple sparing" procedure), I was not able to keep my nipple - the DCIS was far too close to the nipple, so leaving it could mean leaving behind abnormal cells. I was not a candidate for breast reconstruction using my own tissue from other areas of my body, so I chose a silicone implant reconstruction. Nipple reconstruction was offered but I decided against it.

Initially, I was told I may need to have radiation after surgery, in order to treat any remaining tissue, but in the end it wasn't recommended for me. Since DCIS is not an invasive cancer, I did not need to have chemotherapy. I now regularly go for mammograms, ultrasounds, MRIs and clinical breast exams. I will be on Tamoxifen (a drug given to certain women whose cancers were estrogen receptor positive) for a total of 5 years. I was advised that I should not have children while I am on the drug but if I very much wanted to, I could stop the drug, have a baby and continue the 5 years of treatment afterward.

Today, I am happy and healthy. I cannot begin to understand what women with invasive cancer go through. I also will not judge whether or not Angelina Jolie made the right decision in sharing her story. But I do believe in the importance of sharing information because we never know who it may help and how. Sharing my own story has provided me with opportunities to help other women by sharing the resources and knowledge I have acquired through my own experience.

Image credit: Lydia Perez DeJesus


  1. You are such an amazing strong person Diane. I love that you are a wealth of information about a vast number of topics but I admire your strength in sharing this so publicly. big hugs from me