I didn’t have cancer, but I still carry the scars: A BRCA previvor’s story

I knew I wasn’t in the headspace to deal with any of the overwhelming decisions that came with the mutation. I had already been living my life in survival mode for many years, and the divorce felt like I was running for my life. I was using all of my mental energy on taking care of my kids and keeping my job. I did not have the emotional capacity left to make life-changing medical decisions.

By the time my divorce was over, I was in perimenopause, facing a new set of choices. If I tested positive for the mutation, I’d need to make decisions — big ones. And I did.

My family has been decimated by a particularly aggressive BRCA2 mutation – my grandmother and her sister, their mother, three of my father’s four cousins (the fourth was negative) all died from cancers caused by this mutation. My father is an only child because his mother married later in life since she was her mother’s caregiver. He has been living with metastatic melanoma for two decades now. My sister was the youngest to be diagnosed at 49 – the same age I am now. Several of my father’s cousin’s children tested positive for the mutation and have undergone preventative surgeries. My sister’s diagnosis may have saved my life, because once the mutation was identified, I had a choice: take action or wait.

Surveillance vs. surgery

I met with a breast surgeon at the high risk clinic, who presented my options: monitor and intervene at the first sign of trouble or be proactive with a mastectomy. My sister’s cancer was caught quickly and treated aggressively. She was doing great. That made my choice easy — surveillance seemed like the logical decision.

Until it wasn’t.

When my sister’s cancer metastasized, I was devastated. I went with her to get the results of that PET Scan. Her oncologist looked horrified as he read the report. We didn’t know what it said, but I knew it was very bad news. I knew what this mutation was capable of. I had seen what happened to others in my family, and now, I was watching it happen to her. Her oncologist immediately consulted with the rest of her care team and they took immediate action. She began treatment that day. The waiting game no longer felt like a strategy — it felt like borrowed time. I needed to act immediately as well.

The oophorectomy decision was an easy one for me. I had already removed both fallopian tubes via a bilateral salpingectomy, and my doctor and I had agreed then that if I tested positive for the mutation, I would have my ovaries removed as soon as possible. We scheduled the surgery as soon as I found out I had the mutation.

The mastectomy and reconstruction decision, however, was much harder. I knew that removing my breasts could save my life, but I also knew it could take a toll on my mental health. I have struggled with body dysmorphia, a disconnect between my mind and body, and I worried about how the physical changes from surgeries might make me feel like my body was not my own anymore. I wanted to look and feel as much like myself as possible, so I opted for an immediate DIEP flap reconstruction.

That was two years ago. Now I am beginning to understand how traumatic everything I went through really was.

Two years, countless scars

In those two years, I spent 12 weeks recovering from the double mastectomy and DIEP flap reconstruction. What followed was a long and difficult recovery. For 11 months, I struggled with a seroma — a buildup of fluid under my skin — that continued to drain through a surgical drain and my belly button incision. To treat it, I had to undergo six weeks of sclerotherapy, a procedure that is supposed to help the body close the pocket where the fluid was collecting. At about six months post op, my belly button became necrotic, meaning the cells within had died. I developed a staph infection and cellulitis, a painful skin infection, which required emergency surgery to remove damaged tissue and hospitalization for IV antibiotics. In spite of all of those procedures, the seroma returned and continued to cause swelling in my abdomen and legs. Finally, I had my first revision surgery to fine tune the shape of the reconstructed breasts, smooth the appearance of my abdominal scars, and create a new belly button to replace the one I had lost. It was during this procedure that the surgeon was finally able to remove the seroma completely.

I am writing this as I am recovering from a second revision surgery. This one was planned from the beginning because the revisions included 3D nipple reconstruction which could not be done at the same time as the scar revision. I am still healing, so it is too soon to know if I will need more surgical revisions to feel comfortable in this new body.

Scars on scars. Scars across my abdomen, scars on my chest where my nipples used to be. Scars from the removal of my belly button during emergency surgery, and scars from the reconstructed one.

For two years, I focused entirely on what was next — what needed fixing, what needed healing, what needed scheduling. I never stopped to consider what all of this was doing to my mind.

Even while recovering from my own procedures, I was the one driving my sister to treatment, sitting with her through infusions, reminding her to make appointments, following up on how she was doing. After all, she was the one with cancer. She was the one who had it rough.

What right did I have to complain?

Survivor’s guilt and emotional toll

I dismissed my own pain over and over again. My medical team reminded me that there were resources available to me in the cancer center. Every time, I brushed it off. "But I don’t have cancer," I told them. I didn’t want to take resources from someone, like my sister, who really needed them.

But ignoring my mental health didn’t make it go away.

About a year ago, I started to notice that I was struggling — more than usual. I was zoning out, scrolling on my phone for hours, losing time. At work, I could function. At home, I would just stare into the void. I started medication for attention deficit disorder and finally began therapy.

After several conversations with my therapist, I realized I was dissociating.

I had spent the past two years surviving, moving forward, never stopping to process any of it. I had been so focused on my medical issues, on finding pants that fit my new body, and making sure my sister was okay. But my mind had been running on autopilot, pushing aside the trauma because I believed someone else had it worse.

I’m still working on accepting that this isn’t a competition.

None of us have it easy. What this mutation does is horrific. My sister is doing everything she can to save her life, living with the realities of metastatic breast cancer. I had to remove so many parts of my body to save mine. Previvor or survivor — we are both facing different kinds of grief, loss, and challenges.

The road ahead

Hopefully, the physical part of my journey will be over soon. But the emotional part is just beginning.

I am finally working through the feelings I failed to process over the last two years. I am getting to know — and learning to love — this new version of my body. And I am working through the survivor’s guilt that tells me I will heal, and my sister won’t. For now, her treatment is slowing the advance of the disease and giving her a good quality of life and lots more time with her son. I still help her when she lets me, and we are trying to make these good days the best possible.

As a previvor, I experience cancer differently than those who are diagnosed, but it is still very much a part of my journey. I have had six surgeries; one of which increased other health risks. I will be working through the medical trauma for quite some time, and right now, the people closest to me, my entire support system, are all surviving cancer. It shapes the way I move through the world, the way I make decisions, the way I grieve and heal.

And as my physical scars fade, I hope the emotional ones will too.