Live Sincerely 2012 013

“My Previvor Story” – A Guest Post by Helen Smith

I am pleased and excited to offer not one, but two guest posts this week during Hereditary Breast and Ovarian Cancer Week. The first is from previvor Helen Smith. Helen faced her astoundingly painful family history of cancer head on and made tough life-altering decisions to try to keep cancer at bay.

Thank you, Helen, for sharing your story.

My Previvor Story

by Helen Smith

As long as I have been alive cancer has stalked and killed the people I love. Some of my earliest memories are of my grandmother (maternal) being ill. I vividly remember the day she was taken away on a gurney. She had metastatic breast cancer which had spread through most of her body. I was at the tender age of three and didn’t realize that would be the next to last time I would see her alive. I would no longer hear her wise words, nor feel her warm hugs.

My mother, who cared for my grandmother while she was ill, would be left to raise her 5 siblings along with me and my stepsister. I was too young to know it, but my grandmother’s sister also died from metastatic breast cancer at the age of 37, leaving five children and a husband to figure out how to live life without her.

I can only imagine how my mother and father must have felt raising a family in addition to their own. I can only imagine the fear my mother lived with daily, forever wondering – Will I be next to suffer this horrible fate? Unfortunately, she would be. My mother passed away at the age of 49 from breast cancer that metastasized to her brain.

Knowing we had a staggering family history, my two aunts and I have been diligent when it comes to breast health.

Which leads me to today – I am a previvor. I am someone who is trying to decrease my risk of getting diagnosed with this death sentence of breast cancer by having risk reducing surgeries.

Yes, I call it a death sentence because so far no one who has been diagnosed with breast cancer in my family has survived it. 

I heard about BRCA testing in 2001 and was quite curious, but I could not afford the test and insurance did not cover it at the time. That was actually a blessing in disguise. I would find out eight years later that they might not have discovered my mutation at that point in time. Fast forward to 2008. My aunts, my husband and I all went to see a genetic counselor to discuss our family history and the notion of testing to determine if we had a mutation.

We waited another year before anyone would act on it. In June of 2009 I took the plunge and had my blood drawn. One long month later I was told I am BRCA1 positive. Deep in my heart I had figured as much. The news was not shocking, but I still shed some tears upon hearing it. The results made it real, but also brought a strange sense of relief.

I had already looked into what I would do if I were positive, including having a bilateral mastectomy and oophorectomy/hysterectomy as soon as possible. I bought books and read online information from FORCE (facingourrisk.org) and other sites.

These were not decisions I took lightly; it was my life after all! 

I chose to have the nipple sparing DIEP procedure which basically uses your stomach fat to build the new breast mounds and saves existing nipples. I was going to school at the time and working on my Bachelor of Science. Being a science minded woman, I have to say my coping mechanism was to delve into the science and treat the whole affair as if it were an experiment. I hid in the science, but had my moments of breakdowns and tears. Even when you know you are making the best decision based on the available information at hand, it still comes with a huge bag of emotions and it is overwhelming at times.

During my recovery from the bilateral mastectomy, I stumbled upon the BRCA Sisterhood on Facebook and I am so glad I did. From there I was led to a fantastic group of women on Facebook called Beyond the Pink Moon. I have made friendships to last a lifetime and hope in some small way I have helped others to cope with their journeys. I will not say it is a good thing to be BRCA positive, but it opened up my life to people and experiences I never would have discovered otherwise.

If you are interested in reading more details about my journey, my personal story can be found in the book Pink Moon Lovelies: Empowering Stories of Survival by Nicki Boscia Durlester. My story along with 49 other Lovelies is included in the book. I am honored to be a part of this anthology and to know the author as well as many of the beautiful women whose stories line the pages.

About Helen:

Helen is a 41 year old previvor and only child. She is married and has three stepchildren. Helen graduated in 2011 from Ohio State University with a Bachelor of Science degree in Microbiology and currently works in a microbiology lab at Children’s hospital in Ohio. Her hobbies include making cards, reading, listening to music and advocating for hereditary breast and ovarian cancer awareness on Facebook via the groups “Beyond the Pink Moon” and “The BRCA Sisterhood.”

 

Are you, or do you know anyone who is, dealing with a strong family history of cancer? (BRCA+ or not)

If yes, what steps (if any) are you (or are they) taking to deal with things?

11 thoughts on ““My Previvor Story” – A Guest Post by Helen Smith

  1. I am the third generation in a row to get breast cancer. My grandmother died of metastatic breast cancer in her bones when I was 14. My mother had breast cancer, but survived 17 more years without it ever returning. There is also breast cancer in my father’s family. My aunt (father’s sister) had breast cancer twice, but died in her 90s of non-cancer causes and so far one cousin has had it.
    I was tested for the BRCA mutations, but it was negative, so they still consider it hereditary, just the particular genes are not identified yet.
    I have two daughters and a son. I do not want them or their future children to go through this. My daughters are both considering prophylactic mastectomies when they get to their 30s unless significant progress in detection and/or treatment is made by then.
    My breast cancer is metastatic, in my bones, currently in remission. I want to live to see my other two children marry. I have one grandbaby and I want to live long enough for him to remember me and to see his future siblings and cousins.

    1. It truly breaks my heart Elizabeth and Kathi that there are so many families that have cancer coursing through them like yours. I hope now that the doors are opening for others to study these mutations that maybe they can find the metabolic switch to turn these cells gone awry back off. Cancer has stolen 9 people in my family line (that I know of) and countless friends, that being said, I am a silver linings kind of gal, so if anything this has led me to some pretty amazing people. I hope that in the 50/50 chance Elizabeth, that your children will not have to bear the same cross as you. Carly thank you so much for your kind words, you are one amazing and lovely person as well! Thank you Nancy for sharing my story, it is an honor to be a guest on your blog.

  2. Helen, thank you for sharing your story here. Hugs to you. I am one of those people in a gray area. My one primary relative, my mom, died, but not of breast cancer. Her side of the family has a cancer pattern, but it’s one of those that is ‘suspected’ but not genetically mapped. Still, I found genetic counseling helpful. And now, of course, we are discovering there is probably a genetic mutation involved in most cancer. Wishing you well, my friend. xo, Kathi

    1. Kathi,
      I think it’s good you had genetic counseling. I hate it that you are in a gray area. That would probably drive me mad. Thank you so much for your support and your comments. Hugs and loves,
      Helen

  3. I feel so proud to be a Lovely. Helen, your story has always blown me away and I know that without a doubt, your mother and grandmother would be so proud of the woman that you are today: brave, intelligent, and kind. Keep up the great work.

  4. Hello Helen Smith

    I hope you’re doing well

    Today i read your
    “My Previvor Story”
    blog really you did great job 🙂

    i want to share some details about breast cancer survivor Book written by Julia Fortune.I found this book in mid sep. due to my breast cancer search.

    really this book also provide exciting information about breast cancer by the way
    I’m regular reader your blogs u’r are doing great job

    Thx again

  5. Nancy, thanks so much for using your blog to highlight Helen’s story of previvorship. Helen and I go waaaaay back! I’ve considered her a good friend for a number of years. I’m so happy that she is sharing her story, and you are giving her the forum to do so. As we all know, knowledge of our BRCA mutations can be life-saving!

    1. Thank you Teri, we do go way back! So glad you’ve been able to conquer all the crazy stuff you’ve been through on your BRCA journey. You have been and continue to be a great support for so many. Keep up the great work sistah. Lots of loves to you.

  6. Helen…So happy to call you friend and to have been a part of this life-changing experience for you. As I fought my own cancer last year, I thought of you often, and you inspired me to keep trudging forward. You also have inspired me, through your work here, to give back to those who labored on my behalf to bring me back to a quality of life that I am grateful for everyday when I open my eyes…Love you!!

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