I removed my healthy breasts and ovaries and have no regrets.
In fact, I am extremely proud of my decision and would not change a thing.
I tested positive for the BRCA2 mutation which gave me an 87% lifetime risk of developing breast cancer and a 40% lifetime risk of developing ovarian cancer. From the second I found out, I felt like a ticking time bomb. I knew I could control my fate, and so, I dealt cancer a pre-emptive strike!
My story began seven years ago when my father called me and said he was having genetic testing. His cousin had just been diagnosed with ovarian cancer and had a known BRCA mutation.
Men can inherit the BRCA-mutation. They are at risk for cancers that include: male breast cancer and prostate, pancreatic and skin cancer. It is important to learn about both sides of your family history. Many people I’ve spoken with have no idea that they can inherit this from their father, but I did.
It is vitally important to meet with a genetic counselor before undergoing any type of genetic testing. The goal of the counselor is to educate individuals about testing, management, prevention, resources and research. It can all be very overwhelming.
After I received my positive results, I knew that I was going to have risk-reducing surgeries. I searched online for information, but was unable to find anything. This was 7-years ago and well before Angelina Jolie made her public announcement in the New York Times about her own risk-reducing surgeries. I lacked personal connections and support from women who were going through similar situations.
Waiting for a surgery date was torture. I was terrified that I was going to get ovarian cancer. I tried to get the thoughts out of my head, but found it impossible. All aspects of my life were being affected and I couldn’t find anyone to talk with who ‘got it’.
Six weeks after receiving my positive results, I underwent a full hysterectomy and oophorectomy (removal of ovaries). Knowing I would have to deal with surgical menopause was a worthwhile trade to me!
I searched online to find others who understood what I was going through and eventually found a handful of women who also had the BRCA-mutation. They were in the process of scheduling their own risk-reducing surgeries. These women have become some of my best friends.
We all agreed the resources were needed for women like us; a peer support group where we could connect and share our feelings, without being judged.
When my mastectomy was scheduled, I was paralyzed with fear. The build-up to the surgery date was one of the hardest parts. I didn’t question my decision, but I was afraid of the actual surgery and recovery – the pain, how I should prepare, would my kids be taken care of and how would I look and feel. Thankfully, I had this new group of women to talk to. It didn’t eliminate my anxiety, but it created a brand new support system for me and I was so appreciative!
Four weeks prior to my surgery one of my BRCA sisters and I decided to start a private support group on Facebook. We were so grateful to have each other and now we had a safe place to talk.
Recovery was REALLY hard! Anyone who thinks that a mastectomy is just a boob job is wrong! I can’t tell you how many times I heard that. Not having cancer and removing my healthy breasts was difficult for people to understand.
After the mastectomy, I didn’t have enough tissue for breast implants, so tissue expanders were placed under my pectoral muscles. Every 3 weeks I would go to the hospital to have saline injected into the expanders to stretch my skin, so it could accommodate the implants. Once the stretching was complete, another surgery was scheduled. The expanders were removed and replaced with permanent implants. The whole process, for me, was very painful.
Unfortunately, I did experience complications and had to have additional surgeries to deal with them. They were unsuccessful and, over the next two years, I had 4 additional surgeries, which was not only physically exhausting, but emotionally draining as well. If it weren’t for my support group, I would have felt lost. Finally, after searching and being my own health advocate, I was able to find another surgeon who corrected my complications and helped me feel whole again.
Today, the BRCA Sisterhood support group, on Facebook, is the largest of its kind and has over 6300 members worldwide and is growing daily. It is well-known and respected by geneticists and doctors throughout the world. A year and a half ago I decided that a support group was needed in Montreal so I created one and it has been well-received.
In July, I decided to define beauty on my own terms and had a beautiful floral design tattooed on my left breast to cover my incision lines. It took 10 long hours and was worth every painful minute of it. Society shows an unrealistic version of what beauty is and I wanted to share my story and show that we CAN feel beautiful post-mastectomy.
Support can come in many forms: emotional, physical, through connections, bonds and through sharing similar experiences. Everyone goes through difficult times, but no one should ever feel alone.
Whether you are dealing with hereditary breast and ovarian cancer, or know someone who is, I encourage you to make sure that they ask questions, educate themselves and reach out and ask for help. No one dealing with cancer should ever feel alone.
Karen Malkin-Lazarovitz was diagnosed seven years ago as having a BRCA mutation which put her at an extremely high risk for developing breast and ovarian cancer. She chose risk reducing surgeries. Her experience dealing with the consequences of this mutation kindled her passion for health advocacy, outreach, support, prevention and education of those facing hereditary cancers. She created an international support group online which is now the largest in the world, and a Montreal-Based local support group. She is now working on bringing more education and support to Montreal Canada and surrounding areas and working on a new career in patient advocacy and education.
Check out her website: www.beautyonmyterms.com
Follow her on twitter: @karenBRCAMTL and on Instagram: @karenlazarovitz_brca
The secret of change is to focus all of your energy, not on fighting the old, but on building the new. -Socrates