Beating Cancer to the Punch: My Journey to Prophylactic Mastectomy

As my car exited the I-95 ramp to downtown, I looked towards the tall hospital buildings reaching to the sky. I suddenly realized that I or my daughter have been a patient in each of them except one…until now.

Yesterday, I officially became a patient at the MD Anderson Cancer Center. It doesn’t seem real yet. Frankly, I don’t want it to be real.

This spring a family member was diagnosed with breast cancer and discovered the CHEK2 mutation. The discovery led to a domino effect for the rest of our family to be tested. I drew the not-so-lucky straw of carrying the same genetic mutation.

For the last month, I have read countless articles and joined CHEK2 Facebook groups, silently reading as people posted their journeys of cancer, preventative options and every side effect in between. My CHEK2 has left me with two options: 

  1. Aggressive Screening. Every six months undergoing a 3D mammogram and contrast breast MRI, as well as years of tamoxifen to block hormones.
  2. Prophylactic Bilateral Mastectomy. Bye Bye Boobies. Toodle-loo TaTas. Got to Go Girls.

If I choose the aggressive screening route, not only would I have breast MRIs (with iv’s, contrast and laying in tubes for an hour) and five plus years of tamoxifen, I would be living once again with scanxiety. A dejavu nightmare from Marjorie’s cancer journey. We lived with massive anxiety – anxiety build up to the scan, anxiety waiting for the results… Did the cancer grow? Is it gone? Has it spread? We would get the results, exhale and then countdown to the next scan. I’ve been there, done that and not ready to do that again. Ever. Therefore, I have made the difficult decision to undergo a prophylactic double mastectomy, reducing my risk of breast cancer upwards of 95-percent. The surgical oncologist wholeheartedly agreed and supported my decision and the wheels are in motion on the bye-bye boobies train. The road to surgery is filled with appointment after appointment. Mine begin next week with a 3D mammogram, thyroid screening (CHEK2 puts me at a higher risk for thyroid cancer) and plastic surgery consult. The plastic surgery piece is head spinning in of itself – mastectomy to implant, mastectomy to skin graft reconstruction, drains, hospital stays…the list goes on. This is not an outpatient procedure. It is a major surgery that frankly scares me to death, but cancer scares me more.One month before surgery, I will have a contrast breast MRI to make sure I don’t have cancer. If something is found, it will be biopsied and the plan may change. If not, we move forward with pre-op, surgery and post-op hospital stay, drains, surgical bras and other fun accessories. What shakes me most is feeling that my body is being sacrificed and sawed on once again. Marjorie’s birth was sudden and terrifying. Having her pulled from my body at 27-weeks and feeling my insides being torn apart. The trauma of it all still resides within my bones. Now, six years later, I am faced with a not-so-elective surgery where my breast will be carved out of my body and tossed in a biohazard bucket. AND (because life can be both) This surgery is giving me life. If you have ever heard me speak, then you know I always say my former therapists did not save my life, they gave me something so much better – the ability to save my OWN life. I can’t help but feel the same way about this genetic testing. I did not choose my genetic makeup, I did not choose my eating disorder. But this genetic testing is giving me the chance (once again) to save my OWN life. 

No one said life was easy, but damn I could use a vacation on a remote island right about now. Then again, I have never backed down from one of life’s shitty cards and I don’t plan to right now. I march forward with determination, positivity and a hell of a lot of prayers – thankful for my kick ass support system and resiliency that I’ve cultivated over the years. (Shout out to my better half for always knowing gerber daisies are the way to my heart.)

You might have guessed by now, but I plan to share this journey. I don’t share for thoughts and prayers, but in hopes my experience might help someone else. I have seen it happen time and time again as folks go through eating disorders, premature births and pediatric cancer and every other topic I’ve written on. I also share because this is my own therapeutic outlet.

I urge you to get genetic testing and/or share this and encourage others to do the same. No one can save your life except for you. I have never been great at regular doctor check ups. My CHEK2 mutation has taught me a huge lesson in being active in my physical well being just as much as my mental.  Here is to the last two months with my girls. We had fun while it lasted. Maybe I should take them on an island vacay before we part?

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  • Margaret Culbertson
    August 13, 2020 at 8:46 pm

    I have been praying for you in reaching your decision and I know it was very difficult for you and your family. This is a decision I think I would have chosen even at your age and certainly with the experience of 74 years. I hope the peace of mind you get from this will give you a sense of freedom over your body. Prayers for healing from the surgery and for blessings for all the wonderful years ahead with your beautiful family.

  • Tereasa Olinde
    August 14, 2020 at 2:11 pm

    I will be praying for you, and I think you are very brave and I absolutely would do the same thing! What an amazing woman you are!

  • Lynne Stokes
    August 18, 2020 at 11:34 pm

    Facing the same decision or rather after seeing surgeon Thursday, I will know what options. I would choose a double mastectomy as well. I am much older than you, 75 yes old with lots of other medical issues. My older daughter is 4 yrs cancer free from non Hodgkin Lymphoma. She is a trooper but I’m not. My prayers are with you! I hope we can joke or laugh as we both recover well
    Lynne Stokes

  • Laura
    March 26, 2021 at 4:43 pm

    I can’t tell you how thankful I am to have seen your blog. This morning I left the high risk breast clinic with an appointment to see their surgeon, way more information than I thought possible, and feeling like I wanted to cry. I’ve been just told that I have two mutations on the CHEK2 gene. So driving home I started to pray that my heart and mind would be open to the right answer…. then I saw this! Thank you for allowing us to follow your journey and I pray you heal quickly and live a very long, happy and HEALTHY life!!!