Feeling Unbalanced: Double Mastectomy with DIEP Flap, Implants, and Nipple Reconstruction

I love my DIEP flap, but my implant side has been a nightmare. I recommend skipping the nipple reconstruction.

• Procedures: a double mastectomy with a DIEP flap, implants, and a nipple reconstruction
• Reconstruction immediately postmastectomy: no
• Years of procedures: 2014 and 2015
• Age: 47 years old
• Ethnicity: white

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How it all started

Back in 2012, I had a hysterectomy due to breakthrough bleeding. I felt great afterward. My back no longer hurt, the bleeding stopped, and I felt like a new person for a few months.

Just a few months later, I saw another doctor because I felt depressed and was having night sweats. Then, I felt something in my breast and had a flashback to when I had felt a knot in my chest a year previous — but I didn’t get it checked out.

I texted my doctor, and he told me to come in the next day. I called my ex-husband, who’s also my best friend, and asked him to come by and feel my boob. He felt it and immediately started to cry.

After an examination, the doctor sent me for an ultrasound. The tech went from friendly and chatty to having a serious look on his face. He sent the results to the doctor but didn’t tell me anything.

The results came back

I went in for another ultrasound, and the doctor asked me if I had anyone there with me before he told me the results. Luckily, one of my best friends sent her sister because she couldn’t be there.

The doctor said they found a softball-sized lump in my chest that looked as though it had spread across my whole body. It turned out the lump was just 1 centimeter shy of a regulation-size softball.

I couldn’t understand it. I had just run a marathon. I had endurance. I was pretty healthy. It was 4 days after my 37th birthday.

The shock persisted throughout treatment. Every time I walked in to get chemo, I felt like they had the wrong girl.

Starting treatment

All I could think about was that I didn’t have health insurance as a small business owner with my own bakery. I went in for an MRI and wrote a $1,200 check for it. My friend asked how I was going to pay for it, and I told her it would probably bounce.

My ex-husband suggested we move back in together because we’d be common law, and then I’d be covered by his insurance. So, that’s what we did.

I met my surgeon and then started chemo on February 4th. I remember my hair fell out on February 14th, Valentine’s Day, which is a big day for a baker.

Chemo was really hard. I became malnourished, but my ex-husband had to go back to work after his Family and Medical Leave Act time ran out.

He bought me a dog bed so I could sleep in the bathroom while everyone was at school and work. That way, I could be close to the toilet when I needed it, which was often.

Another hurdle to clear

In April, I became very sick.

It’s likely I got a methicillin-resistant Staphylococcus aureus infection in my biopsy site, and I just couldn’t recover. My infectious disease physician was very concerned, so she put me in the hospital. I swelled up in response to the infection and had to skip chemo that month.

At one point, I woke up to a nurse saying they flew my surgeon in to do the double mastectomy right away. My infectious disease doctor was so concerned that she just wanted to get the infection out of my body.

When I woke up after surgery, I immediately felt like a new person — just like after my hysterectomy. I stayed in the hospital until the doctors made sure the infection was gone. I was there overall for a month and a half.

I also had eight drains for 3 weeks after the mastectomy. For me, drains were like pregnancy: It was hell.

Going flat for the first time

My friend, who’s a nurse, cleaned my wounds after my mastectomy. She had to steady me because I was shaking so hard at the thought of what I might look like in the mirror. I probably didn’t look at myself for a month.

I saw a plastic surgeon in July to get tissue expanders placed. He was smart because of how he cut me. He left enough skin for the implants to come, but there was lots of saggy skin in the meantime.

In truth, I wasn’t flat-chested. I was concave. No one told me to expect that.

I was excited to wear a strapless dress because I’d always been big-chested, but the dress would just roll into the concave part. It was hard and definitely an adjustment.

Still, it wasn’t affecting me daily because, health-wise, I felt so much better.

I lived with expanders for a year before my DIEP flap. They’re awfully uncomfortable, and you can’t sleep. You just want them out.

I had flat closure through the summer, and I spent time catching up with my kids. We did a lot of little vacations.

Then, I began transitioning back to work. I didn’t need any more chemo, but I did 60 treatments of radiation just to be on the safe side.

The plastic side of surgery

I didn’t start the reconstruction process until 2014. The plastic surgeon talked me into the DIEP-flap procedure, which is its own kind of special hell.

I didn’t have enough fat for both sides, so I also had a huge implant placed on the right to even things out. That implant has given me hell. I had to go in for another exam recently because we think the scar tissue is stiffening up.

My DIEP-flap side is perfect, but my right side has been nothing but a nightmare. It’s changed its size and shape and is now sagging into my left side.

My oncologist referred me to my surgeon, but he wasn’t a specialist in breast reconstruction — he was an expert in mommy makeovers. I believe he just wanted me to feel pretty again. He was personally invested in it.

I look back now at the unnecessary procedures he did because he didn’t like the way it looked when he sat me up. He did liposuction on my sides to give me curves that I never had before.

He just wanted to give me that “free tummy tuck.” The truth is, it’s not really free. It affects your body for the rest of your life.

I was just along for the ride. I did whatever they told me to do. If they said, “Stand on your head and hum for 50 minutes,” I would’ve done it.

I also had nipple reconstruction, but I wouldn’t recommend it. It turned out to be an extra surgery I didn’t need. I don’t care about my nipples. I can’t feel them anyway.

I didn’t know my implants had a shelf life, either. I thought they went in for life. I’m due for replacements soon.

I don’t really know that I would do reconstruction the same way again, but I’m glad that I’ve had a double mastectomy. I’m glad I don’t live with the fear that cancer could happen in the other breast.

I also had to have back surgery due to chemo breakdown. Cancer has definitely changed my body’s makeup. I’m tired a lot. I sleep a lot. I have to base my day-to-day on that.

Why sharing is important to me

I didn’t make any deals with God, but I did say that if I make it through this, I’m going to help others who need it. I’ll make them food or feel their boobs for them — whatever they need.

People come to me because I’m brutally honest about it all. I don’t regret being very open. I’m glad I did it that way so women feel comfortable coming to me.

If you want to be private, be private. If you want to share it with the world, share it with the world. There’s no textbook way to do this.

What I want to tell others

I encourage other women to find each other for support.

Usually, your oncologist or your surgeon knows someone well enough they can introduce you to. Find a mentor, a friend — someone who will get you through it.

It’s OK to be scared and to cry. I tried to hold it together for everyone, but you don’t have to. I think that was a big mistake for me.

Also, be prepared for financial hardships. My car was repossessed, and we ended up losing my house and my business. Yes, insurance covers it if you have it, but you still have a copay and coinsurance.

I was lucky that people helped me by organizing grassroots efforts like a 5k walk. When they found out my oven had been broken for months, my sorority sisters helped set up a new kitchen for me. My community did so much for me.

Above all, ask questions.

I allowed myself to be blindly led by the medical community and just didn’t ask questions. Ask why they’re doing one procedure or treatment instead of another. You deserve to know.