A Journey Continued: My Bilateral Prophylactic Mastectomy

Hello, lovely. I wrote this over three years ago and since then, I’ve been contacted by many women either considering a mastectomy or wanting to return to training after the surgery. A common thread among women I talk to is that they feel uninformed and confused. I do not believe most surgeons communicate enough about the risks and long-term effects of mastectomies, which is, as one woman said to me, “sad and really an injustice.”

For some, having a mastectomy is life-saving; for others, it is a choice to finally have peace of mind. It is a highly personal decision, and obviously I cannot tell you what to do. But I can share about my own experiences, which have of course evolved since writing this post. If you have questions, feel free to contact me and I’ll do what I can to answer your non-medical questions.

Today is the first day of spring. It’s been nine days since my bilateral prophylactic mastectomy.

So it’s fitting that I feel immense gratitude to be past this surgery and the first brutal week of recovery. The last month or so has tested every fiber of strength, courage, and faith in my being. My perspective on life has changed forever.

It was my choice to undergo this massively invasive surgery. Once the decision was made, I experienced weeks of worry, fear, anxiety, and resulting heart palpitations. This would be a five-hour procedure performed by two surgeons, with a long recovery and reconstruction process. There were risks and sacrifices for both myself and my family. My mom would fly in from Chicago to help and I would need at least 10 days off from my home-based job (though many women take four to six weeks off). I wouldn’t be able to lift weights again for 6-8 weeks.

When my breast specialist of eight years mentioned that I was a good candidate for a bilateral prophylactic mastectomy (preventative) (and that it would be covered by insurance because of my risk), I moved forward with it.

Why I Chose a Prophylactic Bilateral Mastectomy

Many people don’t know it, but I’ve endured 15 years of worry, fear, and anxiety. I’ve gone through three lumpectomies, countless stressful biopsies, and a future certain to include more of all this. My lifetime risk of breast cancer was 30-40% due to a condition called atypical lobular hyperplasia (ALH), a disease not related to family history but due to atypical cells that continued to form in both my breasts. These cells have the potential to turn into cancer but by no means mean that they will.

I could continue with intensive breast cancer screening and medications to reduce my risk, or I could have the breast tissue removed, sparing my nipples and reconstructing the breasts with tissue expanders. In a few months’ time the expanders would be replaced with breast implants in a second, outpatient surgery.

The biopsy from my mastectomy showed more atypical cells were found on both sides. If this was going to end, I felt I needed to end it myself.

Suz_Daughter-888x1024Gratitude and Being in the Present

The mastectomy process is just part of a long journey that’s been incredibly emotional for both my family and myself. Even yesterday I found myself crying as I finished my post-op appointment. They had removed two of my four drains – tubes threaded through my chest and coming out my armpits to collect extra fluid. In a week the last two drains will (hopefully) be removed and I can sleep and dress normally again. I’ll get weekly injections of fluid into the tissue expanders, which are stiff placeholders in my chest that will stretch my skin and muscle so that pliable implants can be inserted in a few months.

Right now I feel gratitude: I’ve made it through so far without infection and my surgeon couldn’t be happier with the way I’m healing. My body is returning to normal after a trip to the ER for excruciating abdominal pain last week, likely caused by constipation. The fog of pain, nausea, an dizziness is receding and I’ve returned to old routines with my family, though still moving slowly and spending lots of time resting.

I’m deeply grateful to my loving husband and daughter and my incredibly generous mother for staying by my side and believing in me every step of the way. They’ll never truly know how much I appreciated them during this time.

What of lifting weights? That’s on hold, of course… I’ll get physical therapy to regain full range of motion and will ease back into strength training. I really can’t foresee what it will feel like to lift weights with my pectorals stretched over stiff tissue expanders, but the surgeons have said I shouldn’t lose function or much strength. I just have faith it’ll be ok.

Each Case is Extremely Unique

Having this surgery as a treatment for ALH is a highly personal decision. Even women who have been diagnosed with breast cancer might never consider a bilateral mastectomy. It’s not common for women with ALH to have a mastectomy and some insurance companies are hesitant to cover it. In fact, a mastectomy is not even recommended as a treatment option for ALH, since the lifetime risk is “only” 30-40%.

But all of this doesn’t take into account the individual’s personal situation – how long they’ve struggled with the risks, how much the disease is escalating, and the mental aspect of the “what if,” notifying your family over and over that you’re once again waiting for test results. And of course, the prospect of a lifetime of continuing along that path.

Everyone’s tolerance for risk, stress, and medical procedures is different, and in the end, that’s what this is about, even when it comes to the BRCA1 and BRCA2 genes (such as in Angelina Jolie’s case).

For now, I’m moving forward and healing. I will share more about preparing for and recovering from this surgery, with the hopes of helping any woman who undergoes a mastectomy.

In strength,

Suzanne

This article originally appeared on www.workoutnirvana.com.

28 thoughts on “A Journey Continued: My Bilateral Prophylactic Mastectomy

  1. Suzanne, I’m sorry to hear that you’ve been dealing with this, but I’m glad that a lot of your worry about future complications will be alleviated!

    I hope that you have a speedy recovery, and that your story helps to save someone’s mom, sister, friend or partner!

    Like

  2. Thank you for sharing Suzanne. such a massive surgery. I am thinking about you and hoping your recovery is quick and smooth. sending you gentle virtual hugs. xx

    Like

  3. Thank you for sharing your story. It sounds incredibly scary and painful. I hope the healing goes well for you and you’re back in the gym in no time! BIG HUG

    Like

  4. OMG, I had no idea & of course none of us did!!! I am holding healing & hugging thoughts for you my friend!!! We always have to choose what is right for us! After losing my hubby’s brother’s wife just recently to breast cancer, I can see that you are doing what is right for you!!!

    HUGE HUGE HUGS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    Like

    • Thanks sweetie. This community is so supportive and I’m happy you and I are friends Jody. My deepest sympathies for your family’s loss, I remember you talking about it. Love you doll!!

      Like

  5. Wow, what incredible strength you have, such an inspiration for the rest of of mortals. You are such a badass I never would have guessed you were dealing with such an intense situation. Sending my strongest healing wishes and gratitufe for your candor.

    Like

  6. Suzanne. You have long inspired us to be stronger in the weight room and by sharing this personal journey, in life overall. What a brave decision and we look forward to hearing about your continued journey. Sending you lots of love and support!

    Like

  7. Well wishes! Please check out the blog at Cancer Exercise Training Institute, Mary Wilson
    RN videos on Youtube, Memorial Sloan Kettering Cancer Center, Sunflower Wellness.
    Once released for exercise many hospitals offer Cancer Survivor Exercise classes, Yoga,
    Tai Chi…

    Like

Leave a Reply to Gordon Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s