Our Voices: A Blog by Links, Callers and Volunteers

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Monday, April 12, 2010

My Family’s Breast Cancer History: KNOWLEDGE is power!

By: Sharsheret Link Program Peer Supporter

Seven years after my aunt survived breast cancer, she learned that she was a BRCA2 gene carrier and had the incredible burden of responsibility to share this with our family. We soon learned that not only was my paternal aunt a carrier but so was my dad and, so was I. As a BRCA2 gene carrier, I learned that I could have up to an 87% chance of getting breast cancer and up to a 40% chance of getting ovarian cancer in my lifetime. These were truly life-changing statistics. As a healthy 36-year-old with 3 young children, married to my best friend, sitting back and “waiting” was not an option for me.

My husband and I made several appointments with breast surgeons, plastic surgeons, etc., as we researched the risk factors for a BRCA2 carrier. We knew that living with this risk, in fear at each mammogram, would not work for us. Staying ahead of breast cancer was what we needed to do. I decided, with the love and support of my husband and family, to have a prophylactic double mastectomy with skin-sparing reconstruction. This seemed absolutely absurd in some ways – to take a perfectly healthy body and perform this type of surgery on it – preventively, but the alternative seemed too risky for me. But, I must say, this is a very individual choice and not a choice that all of my friends or family members would make. Even my aunt, a survivor and BRCA2 gene carrier, did not feel comfortable with the idea of having a prophylactic mastectomy. My sister, also unfortunately a BRCA2 carrier, did not feel comfortable with this choice either.

My breast surgeon advised me to schedule a breast MRI “just to have a baseline.” Even though I had consistently gone for breast exams, mammograms, and sonograms since the age of 30 (due to my family history), she strongly recommended this as well. I went for the baseline MRI and within 2 hours of the test, received a call from her with the devastating news that they discovered some “suspicious areas for breast cancer.” This came as a complete shock - I was just doing this to obtain a baseline. The next day I went back for the sonogram guided biopsies and days later received my formal diagnosis that I actually had invasive lobular breast cancer in my left breast – one that was so hidden between the sheets of breast tissue that it had never been detected by any of the breast exams, mammograms or sonograms over the past several years.

Ten days later my double mastectomy (and reconstruction), not prophylactic anymore, took place. A few weeks after that, I started chemotherapy, which lasted for 4 months. Shortly after the chemo treatments were completed, I had the second surgery for the implants to be placed and, at the same time, opted to do a prophylactic laparoscopic oophorectomy (removal of the fallopian tubes and ovaries) to prevent the 40% risk of developing ovarian cancer. At this point, after all we went through, I couldn’t leave any stone unturned as I knew my risk for this cancer as well. Even though ovarian cancer does not run in my family, every single doctor that we consulted encouraged us to undergo this procedure after we were finished having children to help shut down estrogen in the body (which could also “feed” breast cancer). After 4 weeks, I was scheduled to complete the last part of my treatment, which was 6 weeks of daily radiation. What a journey this has been! Ironically, the prophylactic surgery that we were opting to do to prevent breast cancer became the mandatory treatment (along with chemotherapy and radiation) for ridding my body of this silent disease.

My family has put many pieces together in this puzzle. The BRCA2 gene runs on the paternal side of my family and I learned that my great-grandmother and great-great grandmother, too, had breast cancer. Now, it is just incredulous to realize that this has been going on in my family for at least 5 generations! My aunt recently had a change of heart and underwent a prophylactic double mastectomy because she realized the impact it had on my survival and that it could actually look so good. My sister, too, had a change of heart and, as soon as I got the MRI results, chose to make this difficult decision and had a prophylactic double mastectomy to stay ahead of the risk.

I am honored, privileged, and grateful to be on the other side of this now and have been done with my treatments for 3 months. Above all, I have never lost my faith. With faith, you can conquer everything. It has no bounds and no limits. It often explains the unexplainable and gives you the courage to fight battles and make choices that you never knew or imagined would be yours to make. It helps to bring peacefulness to the insanity in life and magnifies beauty in everything. Thank you, G-d, for the many blessings and miracles that you have bestowed upon us.

I feel wonderfully well, and have an even stronger, deeper appreciation for everything in life. I heard about Sharsheret from my cousin and from a friend and I actually met Sharsheret’s Founder and Executive Director Rochelle Shoretz at a Hadassah event on Long Island. She was just amazing and I related to her positive energy. I knew when my time came to "give back" and/or get involved, my first choice would be Sharsheret for all that the organization represents and does for Jewish women. I feel so blessed to have a second chance and am committed to “paying it forward.” I look forward to serving as a Sharsheret peer supporter and helping other women in this fight with love, strength, fortitude, and faith.

1 comment:

  1. Wonderful post. Had a very similar situation and grateful that I no longer have original breasts or ovaries. I have beautiful new breasts!

    Thank you for sharing.

    ReplyDelete