Why I opted out of reconstruction

I quickly learned that breast reconstruction after a mastectomy, while often beautiful, is not a “boob job” and involves so much more than I realized.

I was presented with three options for reconstruction after I was told by my surgical oncologist that I had to get a mastectomy of my cancerous breast: implants, DIEP flap, or aesthetic flat closure. And at that time, the thought of “going flat” was very foreign to me, and I immediately thought no way… I’m young, I have many summers in swimsuits ahead of me, breasts are womanly…

Then mid-way through chemo, I just buzzed my hair, and I’m looking at my mangled-looking chest with expanders and I thought I don’t give a sh*t anymore.

I share my thought process and the emotions I experienced not because I think my decision is the right one, but because this decision was so incredibly difficult for me and it is such a personal choice for anyone going through this journey. I felt betrayed by my body, alone, anxious, and scared while making these decisions… it was helpful to connect with other women who had mastectomies, to hear their stories and their similar emotions.

The first difficult decision for me was deciding whether to have a double mastectomy or not. At the time of my diagnosis, I was still breastfeeding my 1 year old four to five times a day (my “you have cancer” call was actually on my son’s 1st birthday, ironically my goal was to breastfeed him for a year). I had to stop breastfeeding from both sides prior to my surgery, regardless of my decision. I still felt odd removing my “good side” even though I knew I was not going to have any more children. I was made aware that I had dense breast tissue, which can make finding abnormalities in mammogram images challenging. The recommendation, had I kept my “good side”, was to have imaging every six months, swapping between a mammogram and MRI… for the rest of my life. The hyperventilating-this can’t be happening-my world is crashing down around me-feeling I felt when the radiologist read my mammogram is one I would like to never experience again. One and done… that day I had my first and only mammogram.

(Side bar, mammograms are really not that bad or painful, cancer treatment is worse. Early detection may prevent the need for a mastectomy, chemotherapy, and other treatments. I am begging you to get your mammograms when it is recommended for you. And push for imaging if you feel something odd, confirm the “oh it’s nothing concerning” with an image…)

A double mastectomy does not remove all risks of having breast cancer again, but it greatly reduces my risk of a new breast cancer developing on my “good side” in the future. At the time of my mastectomy, I chose to have a skin and nipple sparing double mastectomy with delayed reconstruction. To me, it felt less traumatic, like I was just replacing the “stuffing”. Due to the possibility of needing radiation, my surgeons only allowed delayed reconstruction - placing temporary expanders to create breast mounds until I am able to have my first reconstructive surgery, six months after radiation is complete. The expanders start flat and they have a metal port in them. A few weeks after my surgery I went to my plastic surgeon’s office and they slowly filled my expanders over multiple appointments by placing a needling into the port.

A mastectomy often causes nerve injury in the area, so I can’t feel much of anything across my chest. Thankful for that when they did my fills, but otherwise it’s an odd feeling that I’m still getting used to.

My expanders felt like tupperware in my chest and were incredibly uncomfortable for me. They also looked terrible, with rippling and concave areas. I knew this wasn’t the final product and I do think this phase is important for reconstruction as it keeps the integrity of the skin and breast area.

The option I initially chose was to have DIEP flap reconstruction, using my abdominal tissue to create breast mounds (link to 1 min video explaining DIEP flap reconstruction). The type of reconstruction is such a personal choice, and there are pros and cons to every option - there is a wealth of knowledge out there and it helped me to talk with others and hear their stories. My plastic surgeon trained with one of the pioneers for DIEP flap reconstruction and she does beautiful work, reconstruction has truly come such a long way and I’m grateful we do have options.

But honestly… I hated every option… I hated that I was in this situation and had to choose. I don’t want implants that carry risks and don’t last a lifetime, I don’t want the recovery and possible complications from flap reconstruction, and I don’t want to be flat. I want MY breasts, MY working, nursing, not-numb breasts. But this is my victim mentality creeping its way in and it does no good here.

So after buzzing my hair during chemo, I’m looking at my expander-built breasts and I realized, I’m going to have to work through body acceptance with any of these reconstruction options because, although my surgeon is very skilled, they will never look like they did before and will never function like they did. Breastfeeding had its challenges, but overall was a beautiful experience for me and my babies. It was important to me and I was devoted to the process. I’m still healing from the emotions that arise when I think about how I will never have that ability again. So I don’t need breasts for nursing, and I can’t feel ‘em when you squeeze ‘em, so I asked myself - what do I really want? I want to get back to my life, I don’t want to give cancer any more of my time, I want to start truly healing, I want to be active. I want to spend next summer swimming with my kids in the pool and running races with my husband, not in intense recovery from DIEP flap reconstruction. I want to pick up my 1 year old… every surgery has 4+ weeks of lifting restrictions…and DIEP recovery is even longer. What if the flap fails and I’m stuck with a scar from hip to hip and no breast mounds? What if they can’t use enough tissue? Am I changing my mind out of fear? Maybe. Would I make a different choice if my children were older? Maybe. Would I make a different decision if I only needed a mastectomy and not also chemo, radiation, and immunotherapy? Maybe. I want these expanders out and I’m going flat.

It was important for me to talk with my husband about this decision, and he was incredibly supportive, reminding me of the reasons why he married me, and none of which were for my boobs.

I wanted this surgery between chemo and radiation so I didn’t have to wait six months after radiation was complete, so I coordinated with my medical team and scheduled my surgery for the beginning of August. I had doubts, and even after my surgery asked my husband multiple times “did I make the right choice?” Like I said, this process and these decisions were not easy for me.

But when I woke up from surgery, I felt this overwhelming feeling of peace rush over me. My first thoughts were that I was grateful to be alive from surgery (surgeries are not my cup-of-tea), and I can finally start my healing journey. I’m done with big surgeries, and in a few weeks after these incisions heal, I can finally begin doing those things I want to do.

I feel free.

It still doesn’t make it easy though… it took me several days to look at my chest and it will take a lot of emotional healing and body image acceptance, a rework of most of my wardrobe, the rebuild of my confidence, and connection with my feminine energy. But I know this was the right choice for me, in this season of my life, and I’m proud to have made that decision. My wonderful surgeon informed me that her and her team are there for me, and DIEP flap reconstruction can still be an option in the future should I want it in a different season.

I’m healing well and I feel like my body is rejoicing in my decision also. I have two to three more weeks of lifting restrictions, which brings so many challenges and heartaches as a mother of young children (picture an 18 month old reaching up, crying “mommy, up” several times a day) , but I got this.

I’ve been working with my therapist Katya Lovejoy and just recently had a session with her. We talked about how a cancer experience can feel like a death of one’s past self, it may not be a physical death, but a death, and then there is this incredible rebirth. Birth can be painful, scary, messy - it takes a lot of work. But on the other side of that is something beautiful and joyful. I truly believe I am on the journey of rebirth of bettering and healing parts of me I wouldn't have done at this point in my life if not for my cancer diagnosis.