brca1 Mutation: Angelina’s Decision

You may have heard about Angelina Jolie’s double mastectomy in response to having the genetic mutation BRCA1.  I am both inspired and motivated to share my story regarding my journey that resonates so deeply with hers… I applaud her decision, as I too made the same one.  My breast surgeon also was adamant about me having a full hysterectomy as well.   When I saw the news, all the memories and emotions flooded my heart and mind, and I knew I needed to share my story again, in hopes that awareness for the BRCA genetic mutation testing can be more publicized.  Although there is a very low percentage of  women/men with the BRCA mutations, I fear this figure is low due to the lack of testing for it. 

I was blessed to have reason to get tested, in a somewhat cruel and punishing way… but I wonder if this genetic connection isn’t something that can be more prevalent than we think.  Heredity plays a big part in Breast Cancer, and I am living proof that if you have a relative with this cancer, you very well could be holding the keys to life in one simple blood test.  My sister gave me the chance to discover this very truth.

A few years ago, I shared my sister’s story, and mine.  We were fresh out of a year filled with agonizing decisions and painful realities.  If you would like to read that post, it is here. 

My oldest sister was diagnosed with stage 3-breast cancer.  As she endured all that cancer patients do: chemo and radiation… test after test…medicines…pain…surgeries…her world was consumed with fighting the monster that held her captive of her life.  Through out this awful time of suffering and horror, she was tested for the genetic mutations BRCA1 and BRCA2.  The tests came back positive for the BRCA1, which led her to urgently beg her three sisters to get tested as well.  This mutation is genetic and there was a 50% chance my other two sisters and I had it.  Our mom’s mom died very young of breast cancer, and because my sister was diagnosed before the age of fifty… the high risk of developing breast cancer appeared to be a significant reality in all our lives, whether we had the mutation or not.

I remember the phone call all too clearly…

She was desperately urging me to get tested while she was in her pain and vulnerable existence.  I truly believed she was grasping on to the only hope she could…

Saving her sisters

I immediately complied and honored her wishes and made an appointment with my doctor.  I was the first of my three sisters to take that step… and I was the first to receive the devastating news that I too, had the BRCA1 mutation. (One more sister had it as well…and had the same surgeries I did soon after.  THREE out of four of us girls had this mutation.  Amazing. )

This news led me to countless doctor appointments and the decision to prevent what looked like a more than 87% chance of getting breast cancer.  I had already been through two abnormal biopsies earlier in my 30’s and with the family history, and now the mutation… it was clearly a threat to my life.  My breast surgeon immediately gave me the treatment protocol for a double mastectomy and was adamant about me having a full hysterectomy as well.  After much research, prayer, and consults with several surgeons and doctors…

I was preparing for a double mastectomy, reconstruction, and a full hysterectomy.

Three surgeons.  Three surgeries. One life-giving day.

And all through the countless pre-operation appointments, tests, MRI’s, and preparations for this massive ‘full body house cleaning’- my husband worked out of town and both my little kids were terribly ill.  My daughter continued in an asthmatic flare for the three weeks leading up to my surgeries, so I was up every night all through the night treating and caring for my precious and very sick little six-year old girl.   For the two months leading up to this massive surgery, I dragged my then three-year old son to many appointments, attempted to get my daughter to doctors regarding her health, and mentally/emotionally prepared for this significant and critical day.

As difficult as all of this was, I never for one moment felt self-pity… my heart was with my sister who was enduring the ‘real thing’.  I knew it was going to be rough, but I also knew my suffering would be over and hers would go on for life… how could I possibly think I had it bad?

Quite frankly, my story isn’t about cancer.  It’s about one difficult season of preventing it.  When I reflect on this time in my life, my thoughts and heart always remember the most tragic part of it all. 

My sister has cancer.

And being a mother of three-year old and a chronically sick six-year old was the hardest part of my journey.  It was the epitome of being a mom.  Although I was going through a very stressful and scary time in my life, every day was filled with being a mom.  My daughter consumed my fears and worries…more than the surgeries.  She was my main focus… and as draining as it was to care for her and nurse her back to health- it was the most important thing to do. 

I went into the surgery bone tired and hadn’t slept in weeks.  I truly didn’t believe my body would withstand the trauma on such a deprived state of existence. 

But it did.  By the Grace of God… it did.

I said goodbye to all the physical pieces and parts that make me a woman… and hello to a new life of knowing that the only redemption my sister triumphed in, was rescuing her beloved sisters from the beast that hides in her.

I came out battered, bruised, cut, and in horrendous agony.  It was a long, painful and grueling recovery. 

My husband bathed me.  My sister came into town to be by my bedside calling the nurse for more pain meds, when I could only gasp.  I could hardly breath, move, function for weeks, and it was months before I could finally manage the pain.  I was surgically thrown into early menopause that wreaked havoc on my emotional state as well.  I ended up with an infection in my right breast… that took me back into torturing pain.  I now have new limits to my physical strength and abilities.  But I will never complain. Although I still feel pain at times, it reminds me that my sister remains captive in her prison of this life-sentence. Thank God, she is still alive and fighting the good fight!

For me…

It was a season that defined my existence, but will never define me. 

I am whole.  I am a woman.  I am free of breast cancer.

I had the miraculous blessing of being able to move on, without the fear of this reality lurking in the corners of my life. 

It was for me, exactly what I knew it would be.  A blurry and agonizing season of suffering and fear and victory.  I am forever grateful to my dear sister for giving me (and my other sister) a fighting chance to prevent what happened to her.  My daughter has a 50% chance of having the mutation as well.  My sister may have saved her life too. 

 Oh Lord, I pray you save my sister.

 Oh how I pray.

 

 *If you have a relative with breast cancer, please look into this test!  One simple blood test truly may save your life.*

 

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Comments

  1. says

    Oh Chris. I don’t even have words. I just want to hug you and high-five you because you’re a brave, selfless, inspirational woman who shares so much of herself right here in writing only to help and guide others. You’re, like, an angel here on earth meant to save people. I’m certain of it.

    • says

      Okay, so like could you please hand write that and put it in a frame and send it to me?!!?? Seriously. I just want to hug you and high-five you for all your love and encouragement!!! Thank you thank you thank you… 🙂

  2. says

    Chris, I am so glad you had the opportunity to have this test. I am sorry you had the mutation but glad you found out before it was too late. And thankful you are aware for your daughter, although I truly hope she does not have to go through what you did. My heart goes out to your sister…saying a prayer for her! Sending a virtual hug your way!

    • says

      Thanks so so much for the hug and the prayers and the encouragement Michelle! I am so grateful. 🙂 I truly feel blessed to have be able to prevent a long hard road that may eventually lead to death. I pray my daughter is not positive for the mutation…or my son for that matter. But knowledge is power, and if she knows early in life- she can start a family earlier before she has to have the surgeries. For this I will be so thankful.

  3. says

    Wow! Your story…
    My very dear friend was diagnosed with stage 3 breast cancer six years ago. She opted to have bilateral surgery/rebuilt all at the same time…chemo and radiation followed. My sweet, dear friend is cancer free (thank God), however she suffers still with lyphodema which causes much pain and swelling daily. She struggles mentally and emotionally. Her children are grown and gone which leaves her dealing with depression and wondering why… She is my hero and a true inspiration whether she believes it or not because she chooses daily to go on with life. She has 3 daughters who continue to be watchful, her mother and 1 of three sisters has/is dealing with breast cancer as well.
    Thank you so much for sharing your story. I pray for your sister too.

    • says

      Oh Laurie! You dear friend truly is a hero… bless her precious heart! Did she get tested for the mutations? Oh how I hope so! If not, she needs to in order to pass on the information that can save her girls’ lives. This screams mutation to me! Please let me know if she has been tested for the genetic mutation for BRCA 1 or 2. If she has either, then her girls need to get tested asap! The test will be covered by insurance as far as I know. It was for me because of my sister! Oh please talk to her for me… for her daughters!

  4. says

    Oh my gosh. I hope every woman reads this and those who think they may have reason to take action, do so. It’s life affirming to be proactive like this, and also brave. But your story is also a huge testament for faith and celebrating life and chances and believing in possibilities. I am awed by this and can’t thank you enough for sharing.

    • says

      Thank you so so much Ilene!!!! I just LOVE how you put that! “huge testament for faith and celebrating life and chances and believing in possibilities”… oh that is just simply beautiful! YES!

  5. Candice says

    A gift she gave us to have that test that may not only have saved her sisters’ lives but may impact generations of women in our family if the mutation passes on. We are so blessed to live in a day where such amazing things are possible in the medical world. So many options but we must advocate for ourselves and turn our backs on ignorance. Love you sis and I pray you will prosper with good health for many decades to come!

    • says

      SO true sister! I sent the post to Cathy- I hope she heard the news of Angelina as I’m sure she would think of our journey. It really was a turning point in our relationship, because she was so glad I respected her wishes. A new deeper bond was created, over something so awful. I am forever grateful, not only to her- but to YOU for being by my side through it all. I still picture you in the corner of the hospital room sitting in the chair with layers of clothes, freezing and eating donuts from Tim Horton’s downstairs… saying, “I am stress eating for you”. One of my greatest laugh out LOUD moments of pure joy- even though it hurt like hell to laugh! Remember that? I was like gasping “stop…stop… I can’t laugh…” Trying to catch my breath and hating and loving you at the same time for the comic relief. Oh Candy, what a memory!!!! You are a true TREASURE sis.

  6. says

    Chris – Wow! I don’t even have words that could describe my emotional state right now! I applaud your decision to re-visit this very painful and pivotal time in your life. How very selfless of you to share and not keep it all to yourself. I think about the “sister” that YOU will save through this wonderful post. BRAVO girl – well done! Love you!

    • says

      AW thank you thank you thank you honey!! It struck me so deeply when I heard about Angelina Jolie, I just knew I had to write more about it- Oh how I pray that more people are now looking into this, if a family member has Breast Cancer. It was a tough post to write. And I am still reliving those memories… and it’s been emotional for me. BUT, I am so grateful for the opportunity to help save lives.

    • says

      AW! SO glad to see you HERE sweet dear cuz! It is a blessing that Angelina Jolie brought light to this piece of Breast Cancer that so few know about. I am praying that more people get testing and more lives are saved. I love you!

  7. says

    Wow, Chris. Thank you for sharing your story. It sounds like such a hard, yet easy decision to make at the same time. And amazing that you found out because your sister was diagnosed with cancer. I love your perspective in all of this. Sending you and your sisters an extra prayer tonight, my friend.

    • says

      Thank you so so much Jennifer! It was a very easy decision to make after researching it all. I felt blessed to be healthy enough to undergo all the surgeries. All the surgeons and nurses kept going on about how big a deal with was to do them all at the same time. I am SO blessed to be strong enough to kick them all out at once!

    • says

      Thanks Rosslyn… I thought about telling you when we visited, but it surely wasn’t the right time! Had you still lived near us three years ago, I know you would have been such a source of strength for me! 🙂

  8. Tammy says

    Chris, as I read this I can’t even begin to imagine how painful this time in your life was, but the overriding thought in my mind is “Yep! That’s the Chris I know and love! That strong, courageous, beautiful, always worried about others even in the midst of her own struggles woman! Your testimony will absolutely spur others on to make this tough decision. You are my hero (in so many ways) and I love you girl. Thank you for always sharing your heart. XOXO

    • says

      Oh you are SOOOOOOOO. GOOD. TO. ME!!!! Would you put this one in a frame too? Well, now you have quite a few frames you need to get (or lamination- remember my bathroom mirror one I need to have?) and I would like to see them all by next group please… 🙂 I wuv the HECK outta you!!! Thank you – you make me sound so awesome!!! LOL

    • says

      I can only hope that anyone with a relative that has breast cancer will check into this test. Most cancer patients will get tested for the BRCA1/2 mutations as far as I know… and those results are critical to every family member they have. Oh, how I pray someone reading this will be saved- just knowing about the test. Thank you so much for stopping by and reading it Emily!

  9. says

    Wow. I am so inspired by this story. I was cheering with Angie yesterday when I heard her news, and I’m so glad you had the chance to do the same for the sake of you and your family. Thanks so much for telling this story. Having been dealing with a lot of breast cysts in the last year, I will be talking about this test with my doctor very soon… xoxo

    • says

      Thanks SO much for stopping by Dani. I am thrilled in so many ways, that Angie (love how you put that, like she’s your bff!! Now I am going to call her that too!!) brought this to light. I never heard of it all before my sister, and I’m sure most people are not aware of this at all. I hope you do talk to your Doctor, especially if you have a history of it in your family.

      • says

        You didn’t know Angie and I are BFFs?!

        I was thinking more about this post today and wanted to come back over to ask you to submit this everywhere. Because it’s such an awesome post and will inspire so many people.

        I will be thinking of your sister.

        And you!

        xo

        • says

          Oh thank you SO much for all your sweet encouragement Dani!! Wow. It truly means the WORLD to me…

          Can I hang with you and Angie some day? I would like to try her beauty products…

          And where do you suggest I submit? It is so important to me to get it out there, in hopes to save lives. Funny thing, I always had a burden for this and then life just distracted me and pulled me away from it. (you know how that goes?)
          And here it is- the opportunity presented itself again, and I feel so compelled to run with it. I feel like I am getting a second chance at raising awareness, and in a bigger way. This was meant to be…

  10. says

    Oh Chris, thank you for sharing your story. What an agonizing time but you came through it and are a stronger woman for it. Bless you and your sisters. Thank you for being brave.

    • says

      Oh thanks so so much Stephanie! It was a bit of a nightmare… I could have shared some pretty gruesome details, but didn’t want to go “there”. I am a stronger woman for it, and it still is a thing of the past through most of my days. The news of Angelina shocked me right back to that year- 3 years ago. I keep reliving bits and pieces of it all over again. The sharp pains in my breasts are always a subtle reminder… But I am not a victim. And I thank God for that every day.

  11. says

    Thank you for sharing your incredible journey and educating women on the power of being proactive with their health. I have two close friends who had the same prophylactic surgery…now I know you — and get to know you more because you were so brave to have the surgery in the first place! Bravo! xoxo A

    • says

      Thanks so much Andrea. The decision to have all the surgeries was almost a no brainer- everywhere I looked for more knowledge and insight led me to a very concrete decision. I knew it wouldn’t be easy, but to me- it was a done deal. No way around this one, unfortunately.

  12. says

    You are so brave. I wish more women had the same kind of courage you do. I am so very thankful that you decided to share your story to benefit so many other women, and families. So timely as well, this weekend I am running in Race for the Cure. I wish you well.

    • says

      I thought about the race too!! My sister does it every year and it makes me so proud! Unfortunately, I am always coordinating my daughter’s dance recitals during the weekend it is always going on. I would LOVE to be a part of it too! I do pray more people become aware of this test, and even the research about these mutations- God forbid, if a family member has breast cancer. Thank you so much for your encouraging words and for running in the Race for the Cure!

  13. says

    Hi,
    I am following you from Doing You well Wednesday. Thanking and praising God for giving you the decision making, the strength and the bravery to go forth with this. I have heard of this and a family I know has gone through a similar thing.
    Being a woman is not measured by our looks, our features, – it is measured by the spirit of God within us. Our bodies are flesh and flesh will die but the spirit is life and it will not fade away.
    Praying for a complete recovery and for you to continue your journey learning more about God and growing closer to Him,
    Blessings
    Janis http://www.janiscox.com

    • says

      Thank you so so much for your encouraging words Janis! I had a difficult time letting go of all the parts of me that made me a mother, even more than a woman. But a dear friend enlightened me to realize that now I can be a mother for years to come- and that truth penetrated my heart so deeply. They don’t need my breasts or uterus any more! I am grateful I had no need for them at this stage in the ‘motherhood’ journey.

  14. says

    Oh Chris. Just sobbing reading this post. It is so raw and honest. And you have NO DOUBT helped someone by sharing your story and the story of your sister. Bravo, friend, bravo!!-Ashley

    • says

      Thanks so so much Ashley!! Your encouragement means the WORLD to me!! It was quite a devastating season for our entire family… I do pray this news with Angelina Jolie really raises awareness about these genetic mutations that can predict Breast Cancer. It’s amazing to me still, that one simple blood test can save your life.

  15. says

    Thanks for sharing your story.

    I do worry b/c my mom’s mom died young of breastcancer(when my mom was 15). And I have lumpy breasts.

    I hope that some time soon this test becomes routine.

    • says

      I would ask your OB/GYN about it, and be cautious in your future to follow up on Mammograms etc. If you have a relative with breast cancer, they usually will get tested for this- if they have either mutation- BRCA1 or 2, then insurance will cover your test and the surgeries! It’s a such a critical piece to prevention, I would LOVE for it to be routine! Maybe someday…

    • says

      Thanks so much for reading it Roshni!! I do hope there is more awareness of this because of what Angelina Jolie went through. I had never heard of it until my sister got tested. I wonder how many lives can be saved with it, if all women had this knowledge.

    • says

      Thanks so much for reading it… I only pray that people can become more aware of this test that can save so many lives! I wish it was talked about more, and I am so grateful Angelina Jolie brought it to light. So grateful for that. 🙂

  16. says

    I admire your fortitude and strength; your ability to encourage others despite your difficult experiences. Thank you for sharing your story again…and heeding your sister’s call for action to be tested. You ARE whole! You ARE woman! Continued blessings and prayers for you, your sisters and all your families.

    • says

      It’s amazing what you can endure when called to the test. I prayed through it all, and the only way I could manage it all was to give it- every last bit to Him. I remember telling Derek in the car at 4am driving to my surgeries that I needed to hear this one song over and over again… I wish I could remember the name- it was a powerful Christian song that resonated so deeply with me at that time. I played it so loud in the car and I cried and sang it over and over again- He was truly my source of strength through it all.

  17. says

    Oh wow Chris! I can’t even see the computer screen because of the tears!! I knew there was something absolutely special about you girl!! 🙂 You are truly a courageous fighter and I’m so proud of you lady! After all of that…you didn’t complain, what an example for us all! So grateful that your body has healed! Praying for your sisters healing in Jesus’ name! I’m so honored to be your friend! Thanks for sharing your story/testimony my sweet friend…no doubt it has helped others!:-) Oh, and thanks for linking up! 😉

    • says

      Thank you sweet friend!! It was a difficult season, but one I knew was only temporary compared to my sister. I am so grateful I was able to prevent a lifetime of pain and possible death. Thank you for your prayers for my sister!! She needs them…

  18. says

    Oh, Chris…how did I not know this? I don’t even have words as I am sitting here crying at all you and your sister have endured. You know we share the bond of having many sisters and I can just imagine the turmoil of watching your sister go through this. I admire you for the strength to do what you did and in a heartbeat, I would do the same. The asthma thing gutted me too because you know I have been there. Asthma, CF, whatever (my boys have both)…stops for nothing, not even mommies that are in pain or dealing with their own stuff. You my friend are my hero. So much love and friendship and hugs coming your way.

    • says

      OH how I know you TOTALLY get so much of this story, AnnMarie!!! You would have done the very same thing… and made it through with your amazing strength and conviction as a woman, a mom, a sister, and a wife. I just pray my sister makes it. That’s more important than anything else in this story.

  19. Candice says

    I’ll come stress eat Tim Horton doughnuts for you any time, any day, any hour.., just say the word sister. 🙂

    • says

      I seriously laugh with tears in my eyes (both filed with love and joy) every single time I think of it… and then I remember every other moment you were by my side. You are the most faithful, dedicated woman I know. I am so so grateful I have YOU for a sister.

  20. says

    {Melinda} I’m so sorry that you had to go through all that, both personally and with your sister. I lost my mother to ovarian cancer at age 69. I have thought about having my ovaries removed, but haven’t made that choice yet. I definitely understand though, the need for peace of mind.

    Blessings and hugs, friend. 🙂

    • says

      Oh Melinda, my heart just aches for you!!! I can’t even imagine that kind of loss. I’m not sure I was aware of that! I keep thinking of Meredith (The Mom of the Year) and Ashley (Dose girl)… both suffered the same loss. I am so so sorry. Has your Doctor talked about the BRCA 1/2 with you at all? Did your mom get tested? Perhaps it wasn’t around during that time. Oh dear friend, keep a close eye… that ovarian cancer is a sneaky monster.

  21. says

    Chris, you are a miracle. And you continue to amaze me. You’re not only talented and supportive and generous, you are incredibly brave and humble. Your story is heartbreaking, terrifying and hopeful – simultaneously. Thank you for sharing your journey with us. You inspire me in so many ways. xo

    • says

      Thank you SO much for reading my post and my story, Ashley! I am so glad you are aware of this, especially with your grandma having Breast Cancer. Every time I hear of anyone having breast cancer, I immediately think the question, “I wonder if they have the mutation.” And then I pray that if they do, all their relatives would get tested asap.

  22. says

    As Grace recovered from her recent concussion, one soccer mom commented that it couldn’t have happened to a tougher kid, and that if anyone could handle it on the team, it was her.

    When this happened to you, I can’t help but wonder if it was because you could travel the road with such faith and bravery, and then share the story with those who love you and those who hardly know you.

    Because we all need to know it. And those of us who love you know that it couldn’t have happened to a more faithful woman.

  23. says

    I love you. You wow me and inspire me. My heart is just too full after reading this story, but Chris, please know how in awe of you I am…I have no words to say this properly. You are amazing.

    • says

      I love you. I am in awe of you and all you have endured as well, sweet friend. My heart is full after reading your precious words. YOU bless ME

  24. says

    Oh sweet friend. Your post rings with such truth and strength in a God who never leaves us. I have not experienced cancer but I’ve experienced the depths of pain through my sister’s death, my parents’ deaths and our adoption children’s torturous journey towards healing. God bless you for sharing your story. I know God will use it in a mighty way.

    • says

      Oh Marty, what an incredibly challenging and inspiring journey YOU have had my friend!!! Your faith shines through enduring and rising through such a difficult path… God is mighty in YOU. What a testimony you have.

  25. says

    I pray that God’s healing power will fully manifest itself in your body and in your sister’s body.

    By His stripes, you are healed! (Isaiah 53:5)

  26. says

    What an amazing journey you have had. I pray for your sister. So glad that you were able to take preventative action. My cancer was found on a routine mammogram. I had no risk factors for breast cancer. No relatives with it. I completely understand why you would take the steps you took not to get cancer. It’s important that you share your story. It will save lives. Thank you.

    • says

      Oh Donna, I am so grateful for your comment! I do pray you are completely recovered and I thank God for your routine mammogram. Cancer is a scary thing… it can sneak up on you and get you when you’re not looking. I feel blessed to have been given the ability to see. I will pray for your continued health. And I am so thankful you understand and support my decisions. Thank you so so much.

  27. says

    Wow Chris. I have chills and I just want to cry for you and your sister. For what you’ve all been through. I will pray for her too. What a scary ordeal, and I just want to say that you are so very brave. And I have three sisters too! Blessings on your family Chris.

    • says

      Thanks so much for your sweet support Alexa!! You have three sisters too? How cool is that?! It was a rough year for sure, but I knew it would be just that- a temporary struggle. I continue to hope and pray my sister remains cancer free…

  28. says

    My dear friend, you just upped the ante to a whole ‘nother level of amazing. Thank you so much for sending me back to this – I had no idea this was part of your life too, and am so glad that you’ve been able to take measures to ensure that this is as far as it goes. Thank God for that!

    So sorry to read about all the stress and difficulty and trauma of this painful season, and am just blown away by the positivity of your spirit and the way you manage to keep everything in perspective and be THANKFUL for all this! You are absolutely incredible, and I feel so very honoured to have such a friend as you.

  29. says

    Chris, I cannot believe you had all three surgeries at the same time! And with young children at home! Thank you for sharing this link with me. I’m so grateful to have met you through MOAM!

    • says

      It was definitely a rough season in my life! But wow- it surely puts things in perspective! I am SURE you can attest to that Ginny! I am so honored and deeply blessed to get to know you, my friend. You are a beautiful and courageous woman!!! XOXO

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