A Previvor’s Tale: What I Wish I Knew Before Surgery

I think I need to give you some back story on my Previvor’s Tale.  Reflecting on my journey as a BRCA2+ previvor, I realize it’s been a complex blend of empowerment, struggle, and ongoing self-acceptance. It’s now the summer of 2024, and I continue to navigate the emotional and physical aftermath of preventative surgeries and reconstruction. Despite all the challenges, I do not regret undergoing this process. However, I wish I had been better prepared for the emotional toll it would take.  I also did a bulk of the revisions through the nightmare of the Coivd Pandemic.

Taking Control in 2019

In 2019, faced with the high genetic risk of breast cancer, I proactively chose to undergo a complete hysterectomy, double mastectomy, and DIEP reconstruction. This decision was not easy, laden with medical, emotional, and personal considerations. Knowledge empowered me. I educated myself, sought advice from medical professionals, and leaned on my support network of friends and my husband. These steps helped me navigate the daunting unknown. Not everyone I knew supported this journey. For every question I asked, I missed a few along the way, like what should I do today to make this process easier?

The Unexpected Challenges

Post-surgery life proved far more challenging than I anticipated. My reconstructed breasts turned out larger than expected, causing discomfort not from pain, but from weight gain and the inability to control it. Menopause exacerbated these issues, bringing significant changes to my body and complicating my weight management efforts. Despite meticulously counting calories and exercising regularly, I gained weight, leaving me feeling lost and frustrated.

Between June of 2019 and December of 2022, I underwent a total of nine surgical procedures. Okay, one of them involved removing my wisdom teeth.  But that is a hell of a lot of trauma.  Add to that a world wide pandemic.  It is no wonder I struggled to find a normal again.

Struggling with Body Image

When I look in the mirror, I often feel disconnected from the person staring back. My body, altered by surgeries and menopause, feels foreign. Shopping for clothes and dealing with everyday reminders of the loss of who I was became overwhelming. The journey to accept this new version of myself has been soul-crushingly difficult.

In 2021, the emotional toll of my journey became evident when I broke down during a church talk. The trauma I had kept buried surfaced as I spoke about Breast Cancer Awareness Month. While I celebrated my decision to prevent cancer, I realized I hadn’t allowed myself to grieve the loss of my former self. This duality of grief and celebration is an essential part of healing.

Nobody really talks about the grief you will experience.   It is real and it is hard.

Friendships and Isolation

For those just venturing into this journey, I don’t think I was prepared for the emotional toll it would take. Friendships disappeared as I could not do as much. The isolation was profound, and I felt a lack of community among other previvors. However, my husband and a few friends remained my pillars of strength. Their unwavering support and love helped me through the darkest times. This experience taught me that support doesn’t always come from expected places and that it’s okay to rely on those who truly understand and care for you.

Online communities never really felt like home. There was a disconnect, often because many of the previvors were much younger than I. Most women deciding to do this are in their 30s and 40s. I was 52 when I started the journey. Cancer survivors my age had different journeys, and I struggled to feel part of their community.

Previvor’s Tale – What I would Do Differently

As of summer 2024, I continue to struggle with body image and process the trauma of my experiences. The emotional scars are still healing, but I’ve learned to acknowledge my feelings and seek support. The journey is ongoing, and self-love remains a work in progress. If I had to do it all over again, I would have done things differently. Perhaps if you are reading this, some of my words may help you. Here are a few things that I would have done differently:

• • I would have gotten acupuncture and nutritionist involvement at the beginning. I may have avoided a lot of stress had I done so from the start with my weigh gain and lack of losing it post surgery.
  • I would have started yoga to help with the recovery process. At the very least, I would have gotten physical therapy.
  • I had my hysterectomy in June, mastectomy in August, and DIEP Reconstruction in November. If I had to do it over again, I would have put more time between the three procedures. In the attempt to get it all in one calendar year, my body paid a very high price.
  • I would advocate for myself more. Every woman who has had breast reconstruction following mastectomy surgery should like her results and feel comfortable in her body. If it takes one or many revisions, I would make sure I am heard that I am not happy with how I look.
  • I would have done my hysterectomy last, giving my body some estrogen in the hard recovery of DIEP reconstruction.
  • I wouldn’t have taken it so personally as people fell out of my life. They were not supportive; it was meant to be.
  • Investment in two recliners was awesome, but two years after all my surgeries we purchased an adjustable bed, I would have done that sooner than later.   Maybe just one recliner.

A Message of Hope

To my fellow previvors, you are not alone. My Previvor’s tale is different than many.  As a matter of fact, no two people have the same experience.  The path is challenging, but within you lies immense strength. Seek support from those who genuinely understand and care for you. Acknowledge your feelings and embrace your resilience. This journey is not the end but a new beginning, a testament to your courage and determination.