Facing a Double Mastectomy

double mastectomy

Photo Credit :: Laura Morsman Photography

There are only a few things I truly fear in life – driving in the rain, scorpions, and dying too young to watch my children grow.

My sister was diagnosed a couple of years ago with stage 1A breast cancer. I remember telling several people that if I were ever put in her shoes I’d have a mastectomy, because at the end of the day, they are JUST boobs, right?

The backstory – thanks to my hero of a sister, I found out in 2015 that I am also a genetic carrier for what’s called Chek2 – similar to the very well-known BRCA gene, but slightly less scary – also considered a newer genetic mutation so not as much research on the genetic marker either. Either way, this gene + my sister having developed breast cancer at such an early age put me at a significantly higher risk rate than the average woman. My prognosis would be to double up on screening compared to the average woman.

Watching my sister endure a lumpectomy, radiation, and ultimately, a double mastectomy made a huge impact on me. I practically lost my sister for a period of time due to this disease. I didn’t, and still don’t, fully understand everything she went through and for the first time in our lives, there was a disconnect. She immersed herself in the cancer community, becoming a counselor to other women, supported Breast Cancer Resource Center and walked in Austin’s Art Bra. As an Art Bra volunteer, I got to see first hand how cancer had affected these women – some had no hair, some had no nipples, most had mastectomies, but all of them were survivors. It was such a beautiful experience, but still it was easy to be 50 shades removed from cancer even with my sister going through all of this, because at the end of the day, it wasn’t me.

Here it is: 1 week ago, I had a double mastectomy. Today I get to sit here from my cozy bed while my husband makes all the decisions in our life so that I can heal from having my perfectly healthy breasts cut off of my body due to a genetic predisposition.

Following my oncologist’s recommendation, I had my first MRI where I learned that there was a lesion on my left breast, which meant I would need a biopsy. It took weeks to schedule, but I was finally able to have it done and thankfully, I was cancer-free and the lesion was nothing more than normal breast tissue.

Since we found out I was a Chek2 carrier, my husband and I started to have really serious conversations about what the probability data was really telling us. We came to the ultimate decision after meeting with one of the most aggressive and educated oncologists in Austin. I nor my husband will never forget her saying that if she was 35, had a sister with breast cancer, was a Chek2 gene carrier, that “she would scoop her breast tissue out with a spoon”. And so here we are.

Going to an oncology center, you definitely witness what cancer does to people. My experience was no different in the lobby of Texas Oncology, there are patients that are receiving chemo, there are patients that are brand new like me, they’re young, they’re old, they’re male, they’re female… cancer leaves nobody out. As fate would have it I had a choice, so many women don’t have that luxury and are faced with breast cancer and potentially metastatic cancer later on in life, which for those who are not up in up with cancer lingo, has no cure. Now who knows what the future holds for me, but one thing I do know is that I’ve taken every step possible to prevent breast cancer. Sure there is still a small chance that I could develop breast cancer, but it’s significantly lower than it would be if I had done nothing.

Recovery has been fairly easy at this point, but no doubt, this is a big surgery. I stayed in the hospital 1 night and have since caught up on 6 years of sleep deprivation at home with the help of pain medication and muscle relaxers. I’m ridiculously lucky to have an amazing support system around me that is constantly encouraging me and validating my decision to move forward with the surgery. While my journey is not over and I still face the reconstruction process, I am at peace with my new body for now.

So if you can take anything away from my story ::

  • Please PLEASE get your mammogram! It is no longer recommended to wait until you are 40-45. If you’re at least 35, start NOW!
  • Consider genetic testing to see if you are at a higher risk. 1 in 8 women will be diagnosed with breast cancer in their lifetime.
  • Mastectomies are no joke, but neither is cancer. You can have drains anywhere from 1-4 weeks. I was lucky as mine were all removed yesterday, exactly 1 week post-surgery.
  • These images from Laura Morsman Photography don’t tell the entire story – Laura is magically talented and can literally make ANYTHING look beautiful… even a mastectomy. 

I no longer have breasts, my sternum sticks out further than my chest, I originally had 2 drains coming out on each side of me with fluid that had to be measured multiple times a day and squeezed out of the tubing {thanks, husband}, my nipples were spared but have the risk of dying so they’re dark and weird looking, I have no feeling in my chest {and may never}, I have incisions around my nipples and across my chest, and I’ve been living in my Recovery Brobe for the past week.

With every story, there’s a silver-lining … my silver-lining is, I don’t have cancer. I’ll get new breasts that my surgeon promises me will look like 18 year old boobs again! And I stuck with my decision regardless of how hard it was to make. I still have a lot of decisions that I plan to face head-on. I used the latest research, very intelligent doctors, prayers and conversations with loved ones to make this prophylactic decision to remove my breasts and reduce the constant fear. I am at peace with my decision.

Double Mastectomy

Photo Credit :: Laura Morsman Photography

Special shout out to Laura Morsman Photography for dropping everything and being at my home in 30 minutes after I decided on a whim to document my experience … you’re an incredible soul, Laura and I so appreciate you for always being there for our family & Austin Moms Blog! 

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15 Responses to Facing a Double Mastectomy

  1. Katy Cornett February 21, 2017 at 8:59 pm #

    Wow! Thank you for sharing your story. I feel like I would make the same decision albeit a hard one.
    Laura Morsman Churchill is an amazing soul. I wish you and your family fast healing. ❤

  2. Natalie February 21, 2017 at 9:09 pm #

    Allison you are such a strong woman inside and out! I am thankful to know someone like you, and I pray for a healthy recovery. You are an inspiration to women everywhere, and yes we should all get checked! Thanks for sharing your story!

  3. Anonymous February 21, 2017 at 11:01 pm #

    Allison you have always been one of the most beautiful women I have ever met. Your beauty today is remarkable as it is pared with a bravery that is unbelievable. Your bravery to do undergo the surgery and your bravery to tell your story are amazing. Thankyou for sharing.

  4. Cindy Henry February 21, 2017 at 11:38 pm #

    Allison, I remember from your pageant days with Julia. I admire your courage and insight. You are a beautiful woman. May God continue to heal you, direct you, and give you His peace as you continue on this journey.

    Cindy Henry

  5. Anonymous February 22, 2017 at 12:14 am #

    I have tears on my face as I respond. Julia has kept me informed – know you have love, prayers and admiration as you move forward.What a beautiful woman you are are, inside and out.

  6. Adrienne February 22, 2017 at 5:50 am #

    Oh my goodness Allison!!! What a shock to hear! You are so brave to share your story. I started getting a mammogram when I turned 40 and even though it is not my favorite thing to get done , I agree with you that it is NECESSARY and hopefully no woman ignores to do it. Praying for you to remain cancer free!

  7. Tarah February 22, 2017 at 8:33 am #

    I literally have tears running down my face! I feel like hitting something I’m so upset…

  8. Vicki B February 22, 2017 at 11:07 am #

    I had a mother who died of breast cancer in 1980 at age 55. There was no gene testing then, but I decided then that I was not going to die that way. I did a lot of research, (difficult at the time with no internet) decided on a Dr. in Dallas and he and I spent several years talking about it. In1988 I had a bilateral subcutaneous mastectomy with reconstruction…now almost 30 years ago. There have been issues over the years with the implants, scar tissue, etc and I have had to have a few redo’s. They aren’t perfect but I have always remembered the reason that I made my decision. I still get a mammogram every year and my gynecologist does an ultrasound of my ovaries once a year. I am healthy and happy, still feel sexy and have not spent the last 30 years worrying. I feel like I was a pioneer and it was definitely a radical decision at the time, but one that I am continually thankful that I made.

  9. Abigail February 22, 2017 at 4:07 pm #

    You are an amazing inspiration to women in this world! What courage and strength that you show not just to your family and friends but to your children and their future.

  10. Anonymous February 22, 2017 at 8:01 pm #

    What an amazing story. Thank you. A company recommended to me by my OB/Gym for genetic testing is called Counsyl, if anyone is interested.

  11. Jenn February 22, 2017 at 8:42 pm #

    Thank you for sharing your story Alison! You are not alone, I also cut off my perfectly healthy boobs at 29, prior to having babies, but after finding out I am a BRCA-1 carrier. I lost my mother to breast cancer and I was not going to have my children lose their mother. It’s been six years since my double mastectomy and I can honestly say, it’s the best decision I have ever made. I can look at my husband and two children and KNOW that they will not lose me to breast cancer. It’s liberating!

  12. Leslie February 24, 2017 at 10:54 am #

    Alison,
    I’m in Austin as well and underwent s nippke sparing double mastectomy mid January (5 weeks out now). What a gift it is to be proactive in our health and get to take care of ourselves. (And an estrogen receptive carcinoma was found in my breast tissue when sent to path.
    Thanks for telling your story and hope you are doing well. Being just a few weeks ahead of you I can tell you it gets better and things get easier! My expanders are being filled and I have my reconstruction in several weeks, and I’ve been able to exercise again which is soooo helpful!
    Gentle but big hugs to You!

  13. Stephanie February 27, 2017 at 12:43 pm #

    Thank you for sharing your story Allison. Sending your gentle hugs and blessings.

  14. Allan March 11, 2017 at 8:52 pm #

    Allison,
    Your story touched me as I helped my late wife get through breast cancer. She had a lump and they removed it, had radiation and was told she beat it. Unfortunately 6 years later at 63 she was diagnosed with lung cancer and passed 7 months later.
    You are a beautiful women and your chest doesn’t make the person, your personality does. You made the correct decision for yourself and your family.
    May you enjoy many years of happiness and I appreciate your being so open.
    PS I had a prostatectomy at 55 and I’m still enjoying my kids, grandchildren, great grandchildren and life at age 72.
    Thank you

  15. Stephanie MS March 13, 2017 at 8:34 pm #

    I too have the Chek2 mutation and I am the mother of three young children. This is a decision many of us are faced with because it is a relatively new mutation and we want to LIVE. You made a very brave choice. For now I am screening but this choice is still not off the table for me. Wishing you the best.

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