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“52 Octobers” – A Guest Post for HBOC Week by Nicki Boscia-Durlester

I am pleased to once again this year feature two guest posts during HBOC (hereditary breast & ovarian cancer) Week. This year I have the privilege of sharing a mother’s and her daughter’s stories. The first post is by my good friend and fellow advocate and author, Nicki Boscia-Durlester, a cancer survivor whose family history includes a staggering number of cancer diagnoses and deaths. The second, soon-to-follow post will feature Nicki’s daughter, Ally, who shares her previvor story. Many thanks to Nicki and Ally for their willingness to share their stories with you, my dear readers.

“52 Octobers”

by Nicki Boscia-Durlester

One of my earliest childhood memories is of my mother slowly crawling her fingers up our kitchen wall. At the time I thought she was playing Itsy Bitsy Spider. I would sing along in amusement as she struggled to reach as high as she could. I had no idea she was trying to strengthen her right arm, which had been ravaged by a radical mastectomy. I was 5 years old. At 58 the image is as vivid as that day in late May 1962.

I had no clue then that my mother and six of her sisters would be diagnosed with hereditary breast and ovarian cancer (HBOC), linked to a BRCA2 gene mutation in my large Italian family. Six of the sisters, including my mother, would lose their lives to HBOC. Our specific BRCA2 mutation would not be discovered until 1998, after decades of research by the National Institutes of Heath (NIH). My family had participated in a study at NIH to identify mutations linking malignancies in large families.

I suppose I always knew I would get breast cancer, especially after finding out I carried my family’s BRCA2 gene mutation. I had my chance to make a preemptive strike, but chose active surveillance instead. Maybe I thought I was destined to walk the same path as my mother or that I did not deserve to avoid the same fate. It seemed like a family business I was predestined to join. I often struggle with that. After all who would not take the opportunity to avoid breast cancer? Once diagnosed, I felt liberated. I finally had the reason I was looking for to remove my breasts, without people thinking I was a hypochondriac.

Eighteen years earlier at the age of 34, I had a prophylactic total hysterectomy; that was prior to knowing I had the mutation. My mother also had fallopian tube cancer, a stealthy opponent without early detection methods, which eventually claimed her life. In 1990, prophylactic surgeries were not in vogue. I thought if I also removed my breasts people would think I had jumped off the deep end. Removing them without a cancer diagnosis seemed too radical at the time, a clearly myopic way of thinking, that came back to haunt me. Hindsight is a curse.

In the aftermath of my diagnosis, bilateral mastectomy and recovery my only daughter tested positive for my family’s BRCA2 mutation at the age of 23. She weighed her options carefully for three years before having a prophylactic bilateral mastectomy. At a later date, hopefully after having children and by the age of 40, she will prophylactically remove her ovaries and tubes. At some point in the future my only son will also test for the mutation. I hope and pray he is negative.

My life has changed course since my diagnosis of Stage IIA ER+, PR+, HER- breast cancer in March 2009. Supporting other survivors and previvors has become my life’s work. After self-publishing my memoir, Beyond the Pink Moon, I founded a Facebook group by the same name, a global support group for breast and ovarian cancer survivors and previvors. Members also include renowned doctors, RNs, genetic counselors, healthcare professionals and HBOC advocates. It is an active forum for discussion that includes breaking news and relevant research articles and studies in addition to healthy lifestyle and prevention tips. With almost 3,100 members in 30 countries, we call ourselves The Pink Moon Lovelies, a name coined by fellow moderator, Susan Long Martucci, a two-time breast cancer survivor. Melissa Johnson Voight, a BRCA1 previvor also moderates the group. Collectively, we published The Pink Moon Lovelies: Empowering Stories of Survival, an Amazon best-selling anthology of 50 stories from breast and ovarian survivors and BRCA previvors from seven countries, with a Foreword written by world renowned breast surgeon, Dr. Kristi Funk, Medical Director of Pink Lotus Breast Center.

It has been fifty-two Octobers since I watched my mother, Bianchina Buschi Boscia, crawl her fingers up our kitchen wall while singing along to Itsy Bitsy Spider. I cannot help but draw an analogy between the spider, who never gave up, and the search for the cure. Who would have thought more than a half century later the conversation would remain the same, only now it is not in hushed whispers behind closed doors. I hope someday the elusive cure will end the dialogue about breast cancer. In the meantime, like the spider, I will never give up. I will continue educating with my fellow advocates until someday we can rest in the sun. In my case… Beyond the Pink Moon.

About the author:  Nicki Durlester

Nicki Boscia Durlester is a BRCA2 breast cancer survivor, Author of Beyond the Pink Moon: A Memoir of Legacy, Loss and Survival, Founder and Administrator of the Beyond the Pink Moon Facebook group and Creator of The Pink Moon Lovelies: Empowering Stories of Survival. Contact info: nicki@beyondthepinkmoon.com
Twitter: @nickidurlester
Note:  To learn more about both books, please click on the book images below.

 

 

 

Beyond the Pink Moon: A Memoir of Legacy, Loss and Survival

 

 

The Pink Moon Lovelies: Empowering Stories of Survival

 

Is there a hereditary risk factor for cancer in your family? 

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Beth L. Gainer

Friday 17th of October 2014

Nicki, Oh my gosh. This post moved me to tears. You and your family have been through too much….too much. This is such an eloquent, poignant post. I hope your son tests negative and that your daughter is fine. xoxo

Jo-Anne Ward-Boas

Friday 10th of October 2014

Love my Mama moon and her baby bear, not just a girl but a mini hurricane in your intensity and absolute dedication for saving lives. Thank god from down under you exist. Thanks Nancy for giving both lovelies a platform. xxxx

Nancy

Saturday 11th of October 2014

Jo-Anne, They are pretty amazing women aren't they? Such a privilege to feature them both on my blog. Thank you for reading and commenting too.

Tracy Smith

Thursday 2nd of October 2014

Nikki has been a great support to myself and so many when we struggled with this terrible disease. Nikki you are forging the way to be heard, for change, for updating and putting a face to our stories...such a fearless warrior, a sweet soul, a dedicated mom. Love you Nikki

Nicki Boscia Durlester

Saturday 4th of October 2014

Tracy, (aka my Buttercup), thank you for taking the time to comment. You know I'm just a girl trying to make a small difference as I make my way through this crazy thing we called life. Thank you for being my friend. Love, Your Angel Pie

eileen@Woman in the Hat

Thursday 2nd of October 2014

Nicki, thanks for sharing your story. Sometimes I can't believe what we all go through. I'm also a BRCA-2 girl. Yes, it runs in the family.

Nicki Boscia Durlester

Saturday 4th of October 2014

Eileen, thank YOU for taking the time to read my story. In spite of all I have gone through my BRCA2 mutation has never defined me; just part of my DNA. All families have something. Live strong, live long!

Lisa Jey Davis

Wednesday 1st of October 2014

I will never again think of Itsy Bitsy Spider in the same way. What a beautiful, yet sad story. I too am from a large italian family, though we believe our mutation came from our dad who passed away from some unknown cancer in his trunk region before we knew of the gene.... Thank you for all that you do. I truly hope many lives are saved by your story. I know for a fact you have touched many lives, my own included.

Nicki Boscia Durlester

Thursday 2nd of October 2014

Thank you, Lisa. Means so much coming from you. We speculate that our BRCA2 mutation was passed down by my maternal grandfather. He passed away from what we believe to be mesothelioma. My maternal grandmother did not have cancer. A 50/50 chance for each family member to inherit the mutation, but in our case most lost the coin toss. Many thanks for all you do to educate. Just so glad our paths crossed. Up the water spout we go!

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