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Why I Had a Bi-Lateral Mastectomy

2020 March 18

In my last post I shared all the info about how I found my breast cancer and how I was diagnosed with Ductal Carcinoma In Situ (DCIS Stage 0, Grade 3, Estrogen+). I also mentioned how my doctor originally thought we’d be treating it with a lumpectomy and radiation. Well, I think it’s pretty common in these situations for things to change quickly.

Immediately following my diagnosis, Stu and I met with my cancer team. It involved a multi-hour appointment to speak with each doctor—the breast surgeon, oncologist, and radiologist—individually. In a nutshell, the surgeon reviewed my scans with us and said the area of DCIS was large enough that a lumpectomy would end up taking out most of my breast tissue and she recommended a mastectomy on that side. She also recommended I get genetic testing to figure out if there was a reason I had this cancer. I don’t have a family history, I’m healthy, and under 40, so that raised a red flag. We decided to wait on a final surgery decision until testing was completed.

Because we decided to do away with the whole breast, radiation wouldn’t be needed—there would be nothing to radiate! So that meeting was cancelled. My oncologist was up next and she said that since my cancer was estrogen positive, she’d probably prescribe tamoxifen for five years. (That convo was then put on hold until after surgery.)

Genetic Testing

This part took a couple weeks (aka forever in cancer diagnosis time) but in a nutshell, I provided my very limited family history and gave blood which was sent off to a genetic testing facility. It was rushed but results still took about 10 days and showed I have a mutation of the TP53 gene. I’m still learning about this diagnosis, but so far I know it makes me 55-85% more likely to get breast cancer again.

Since my reconstructive surgeon had already said he’d have to surgically modify my unaffected side to match the affected side, I figured I might as well just have them both removed. I didn’t want to have to go through any of this again, ever. So it was a pretty easy decision.

Reconstruction Options

In the midst of all of this cancer education, I had to make a decision on what kind of reconstruction I wanted. There’s of course implants, but there’s also something I’d never heard of, but is super common, called a DIEP Flap which basically takes skin and tissue and blood vessels from your stomach to make breasts. My surgeon is an expert in this procedure and I liked that it was permanent and uses natural tissue instead of silicon. (See this video for a better idea of how this worksdon’t worry, its an animation, not real surgery). I chose the DIEP Flap option and proceeded to research and talk to anyone I could find who’s had the surgery. I found tons of stories and support groups to follow, but in the end I decided it wasn’t the right call for me right now. It would involve at least three surgeries— 1) bi-lateral mastectomy to tissue expanders, 2) a 8-10 hour DIEP Flap surgery, 3) then “revisions” like fat grafting—and tons of recovery time. SO much recovery time. I was also worried my back would be an issue since I’d be unable to use my ab muscles for weeks or months due to the hip-to-hip incision. And after having back surgery six years ago, I was not about to mess it up again.

I couldn’t sleep at night with this surgery decision weighing on my mind, worry consumed me. I had nightmares and stress dreams every night. So I met separately with both surgeons again to ask the dozens of questions I’d complied. They patiently answered them all and agreed implants were the best option for me at this time in my life. I know there are risks with implants—believe me I know—but I also have a TON of friends and acquaintances who have no problem with their cosmetic implants and highly recommend them.

My final surgery decision was to have a skin sparing bi-lateral mastectomy with sentinel lymph node biopsy. Tissue expanders would be placed temporarily, which would be gradually filled and then replaced with implants 2-3 months later.

And what do you know, I could sleep again. It was like a giant weight had been lifted.

So then I just waited. Since I had to wait those weeks for genetic testing, by the time we made final surgery decisions and scheduled my surgery date, I ended up having to wait almost two months to get this poison taken out of my body. I cried when they called with the date. It seemed SO far away. But after some thinking, I was grateful for the planning time. I bought supplies, talked to friends, made schedules and lists for my parents who we flew in to help. I got my hair trimmed and hung wall paper and painted my dining room and had acupuncture. We went snow tubing. I made cookies with the kids, took them to museums and parks. I made a friend’s surprise birthday party cake. I went to Barre3 four times a week because I knew it would be months before I could do it after surgery. I went out with friends—coffee, lunch, dinner, drinks, whatever!—and had date nights with Stu, to places like Taylor Shellfish and Canon. I told teachers what was going on. I explained everything to the kids over and over.

Finn and I exploring Gasworks Park, our new favorite Seattle spot

The waiting time was well spent. I felt ready. But still really scared.

But I’m here and cancer free and recovering nicely so clearly the surgery went swimmingly! So next post I’ll share all the details of by bi-lateral mastectomy, including tools/gear I found incredibly helpful for my recovery.

How I Found My Breast Cancer

2020 March 9

I’m usually a very open person. As anyone regularly reading this blog knows I will tell anyone about anything in my life. But aside from telling close family members, I kept my cancer diagnosis to myself for months.

I guess I needed time to process everything. I went from knowing very little about cancer to being assigned a cancer team and given a huge binder of information all about my situation. I was afraid people would treat me differently, leave me out, pity me, or tell me cancer horror stories.

But, after that processing time, it felt really good to tell people. I started with a few phone calls. Then, once my surgery date was scheduled, I let it rip. I told everyone and the support I received helped keep me positive and courageous, even though I was really really scared. AND, I’ve loved how many people have reached out to tell me they scheduled their first mammogram or one they’ve been putting off for a while. If I can help remind women to take care of themselves, sharing my personal journey will be worth it.

It all started…

It all started back in Virginia. As we were getting ready to move (aka super distracted), I noticed…an irregularity on my breast. Basically it was #8 on the graphic below…

I love this excellent illustration courtesy of Elizabeth Strafford

You look for lumps, right? I’d never heard anything about breast cancer showing up as dry skin, so I just ignored it. After breastfeeding two kids, I’ve seen worse down there. But when it wasn’t gone after a month of ignoring, I decided to get it checked out. My friend Amy says it was my gut telling me something was wrong.

We’d just arrived in Seattle and I didn’t a doctor, so I googled the local hospitals and made an appointment at Virginia Mason Women’s Center. I wasn’t due for an annual, so this appointment took five minutes. The doctor said she didn’t feel anything but I should make an appointment at the Breast Center to get it checked out. I wasn’t thrilled but thought it would probably be nothing…until I was set up with a hours long appointment that would include an overview exam, a mammogram, and an ultrasound. On the call I asked the very nice scheduler what I could research to be prepared for this visit and she kindly gave me some links on cancer.org.

I started to worry.

At my appointment, a breast doctor did an exam and said my symptoms didn’t necessarily mean I had cancer and if all came back clear on the scans, I should use Aquaphor and see her again in a month.

Then I experienced my first ever mammogram! Ladies, common. It’s not that bad. Sure it feels like your boob might explode but it’s only for a second! The technicians were incredibly nice and it was over quick. I waited for a few minutes for my ultrasound before being escorted into…another mammogram room. For another scan. Which I knew was bad.

We See Calcifications

Usually, mammogram results are mailed to patients. But in this case, the doctor told me I’d have answers immediately…thank goodness because I’m no good at waiting. After the ultrasound the doctor came in to speak with me. “We see significant calcifications in your left breast and want you to have a biopsy.” I didn’t cry until I asked her if I should tell people about this. Just the thought of telling people made me so incredibly sad. She told me 80% of the time biopsies come back clear, and that there were many reasons for calcifications to show up on a scan.

But I knew. I knew it would be cancer. And anyone who knows me knows I’m a positive person, I try to see the best in a situation. But in this case I was positive I had cancer.

Biopsy

I didn’t tell anyone but Stu. I didn’t want to tell people I was having a biopsy and worry them and then call and say “False alarm!!” That’s annoying. So I went in the next week for the biopsy. Not to scare anyone going through this, but damn biopsies are terrible. Mine was “stereotactic” or “mammography-guided” meaning I was laying on a very uncomfortable table with a hole in it for my breast to hang through. The radiologist sat under the table and squeezed said breast in the mother of all mammograms while what can only be described as drilling into my breast to suck out tissue.

It was horrible.

I went home and waited for the results. Turns out we left for Thanksgiving a few days later—a week in Sanibel, Florida with my parents and extended family—and managed to forget about possibly having cancer for a bit.

It was positive.

My doctor called on Tuesday of Thanksgiving week. I was in a swimsuit happily sautéing corn for salsa while Stu had the kids at the pool when I answered the phone. “Your biopsy came back positive for Ductal Carcinoma In Situ,” was what she said and my shocked answer was, “Really?? Holy shit!” I know, not very profesh, and I know said I was sure I’d have it, but it was still an absolute shock.

The doctor told me I was considered “Stage 0” and that I’d be meeting with my cancer team when I got back to town, but that I should expect a lumpectomy and radiation to treat this “very treatable, very curable cancer”. Curable. Stage 0. Treatable. Those words carried me through that week. They helped when I told my parents and closest friends.

But, as with so many medical situation, things change.

Things change, like here I am almost three weeks out from my bi-lateral mastectomy (that means both boobs = gone) and still can’t really believe this has all taken place. But I feel lucky every day because my diagnosis could have been worse.

More on why I chose to go this route in the next post!

* I only know about my own personal situation, I know nothing about other types of cancer. If you have a similar diagnosis and want to chat, please get in touch! Happy to share my experience any help in any way. I’ve shared lots of pictures and information on instagram too. *