The Lilith Blog 1 of 2
July 20, 2017 by Ali Walensky
Hi. My name is Ali Walensky. On December 15th, 2016 I was diagnosed with stage 2B breast cancer. As of June 15th, 2017, I was declared cancer free. The Lilith article I’m featured in focuses on my advocacy for an incredible organization called Planned Parenthood. Planned Parenthood was the first place I went to for a breast exam. They also wrote all of my prescriptions for any tests I needed and checked in on me the day after I was diagnosed. It’s impossible for me to overstate how much Planned Parenthood has helped me and how they truly saved my life.
Most women my age aren’t too concerned about breast cancer. It’s usually something that affects women who are at least twice my age, but breast cancer is something that’s been on my mind for a while now. My family has a history of the BRCA 1 gene mutation. This mutation gives a person anywhere from a 65-89% chance of developing breast and ovarian cancer as well as a higher chance of other cancers such as skin and pancreatic. My mother, her two sisters, my first cousin, and (as I would come to find out) my sister and I all have this mutation. Not only that, but my grandmother and her two sisters, who were all BRCA negative, are all breast cancer survivors. Ashkenazi Jewish women are also at a higher risk of developing breast cancer. I knew and accepted the fact that it would happen to me some day, I just didn’t think it would be so soon.
From January to April of this year I had six chemotherapy infusions. If the side effects of chemo weren’t enough to deal with, I had a decision weighing on my mind: surgery. My options were a lumpectomy with radiation afterwards, a unilateral mastectomy, or a bilateral mastectomy. Many people in my life thought my decision would be easy. Get the bilateral and then you don’t have to worry about a reoccurrence or continue to get screened. With my genes and luck cancer was bound to happen again. But let’s back up for a second. I’m 25 years old. Opting to get my breasts cut off, breasts that I’ve had for fifteen years and proudly grew myself, is not a simple decision for me. There is a trend now of young BRCA+ women opting for a double mastectomy before they’re diagnosed to make sure they don’t develop breast cancer. They have every right to make that decision if they feel that’s the best option for them. But this is the problem that I kept coming back to: Even without breast tissue a person still has a 1-3% chance of developing breast cancer. I had a big decision to make.
After talking to my doctors I decided to go with a unilateral mastectomy, to just remove the breast where cancer was found. That way I wouldn’t have to go through radiation and I could hopefully end my cancer journey for the time being while continuing to get screened for peace of mind. Now I had yet ANOTHER decision to make. Do I use my own fat tissue for reconstruction or use an implant? After doing a little research and looking at pictures in my plastic surgeon’s office I decided to go with flap reconstruction and use my own tissue. For this procedure they cut out fat tissue from one part of my body and use it to reconstruction my breast. As my doctor examined me he kept saying that he wasn’t sure if there was enough fat in one part of my body to match my current breast size. I would just like to say this has been the only time in my life where having large breasts and minimal fat has been a problem for me personally.
My 10-hour surgery, that happened five weeks ago as of tomorrow, ended up consisting of complete removal of my left breast tissue, removal of 12 lymph nodes, and a transfer of tissue from both of my inner thighs to reconstruct my breast. I had a fantastic team of doctors and I even got to keep my nipple! But unfortunately there wasn’t enough fat to match the original size of my breast so I am choosing to go back in for further reconstruction early next year.
You’ve heard a lot about difficult decisions I’ve had to make throughout this process and there are more I didn’t even talk about. Do I get the lump checked? Where do I go to get it checked? Who should my oncologist and breast specialist be? Do I freeze my eggs? Do I get a port put in? When do I start disability? What surgery do I want? Do I want reconstruction? What kind of reconstruction do I want? What further reconstruction do I want? There were so many decisions that had to be made. But they were my decisions.
Right now there are people in Washington who want to take those decisions away from us as to say, “Don’t worry your pretty little head about those things.” Hey buddy! I got news for you. It’s my body and I’ll do whatever I darn well please with it! I got to make those decisions because I had health insurance. This supposedly dead Republican health care bill will take away decisions for millions of Americans like myself by kicking them off of health insurance or allowing insurance companies to not cover essentials such as mammograms or making even being pregnant a pre-existing condition. Well guess what, I am more than my pre-existing condition. I am a person. A human being. I’m a teacher, an advocate, a daughter, a sister, a Jewish woman, a feminist, and I am not backing down. I encourage all of you to continue to speak out, call your Senators and Representatives, donate to places like Planned Parenthood, have civil conversations with people who may disagree with you, and feel free to share my story. Because I promise you that Republicans are going to try again to repeal Obamacare. It’s our responsibility to let them know…we’re not dead yet.
These remarks were delivered by Ali Walensky at Lilith’s summer issue launch party on July 19.
Ali is a 25 year old research coordinator at the Child Mind Institute. She attended the University of Southern California where she received a Bachelor of Arts in Psychology and Theatre. Recently, Ali has turned her attention to the fight for affordable health care and the funding of Planned Parenthood after being diagnosed with breast cancer.
The views and opinions expressed in this article are the author’s own and do not necessarily reflect those of Lilith Magazine.