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My Mastectomy Surgery

2020 March 29
by Becky

I’ve been sharing my breast cancer saga in hopes of sharing information with women going through something similar and for friends and family who want the whole story. I shared how I found my breast cancer and why I decided to have a bi-lateral mastectomy, so now I’m talking about the actual surgery.

Posing with the ancient but effective nuclear medicine imaging equipment

After weeks of waiting and planning, the eve of my surgery had finally come. That day, I learned about nuclear medicine. My doctor wanted to remove my sentinel lymph node during my mastectomy to make sure it was cancer free, so the day before I had to have an injection of a radioactive tracer that would show my doctor which lymph node would be affected first. I watched on a screen as the tracer liquid was sucked into a lymph node, after which the location was marked on my skin. I was in and out in about 40 minutes, no big deal.

Made it through surgery!

The next day, on February 18th, I had my surgery. In the weeks before I was really scared. The support and love from family and friends helped tremendously, and Stu was always so patient when I completely broke down with fear. Somehow though, after the lymph node injection, I was calm and ready. We arrived at the hospital early on that Tuesday morning and were totally impressed by the efficiency and professionalism of all the staff checking us in and getting me ready for surgery. My surgeons came in to say hello and mark me up—we could tell they were a well-oiled machine, having done this together countless times. I teared up when it was time to give Stu one last hug and the anesthesiologist suggested I get some “I don’t care” meds. I remember getting onto the operating table and then I woke up 7+ hours later in recovery.

Stu told me the doctors said the surgery went amazingly well. I was sore and scared to move but wasn’t completely debilitated. I had decent arm movement and was in a pretty good mood. The nurses took incredible care to make sure I was always ok. I took one pain pill while in the hospital, but after that started alternating ibuprofen and acetaminophen for pain relief…that hard stuff is just too scary. I even slept a little that night in the hospital but the next morning I was determined to walk around as much as possible (which wasn’t much!) so they’d send me home—and they did! Less than 24 hours after surgery I was on my way to my own bed.

Or, should I say, my recovery nest…

If I did anything right in this whole scenario, it was getting supplies to make me as comfortable as possible for recovery. I scoured the internet for suggestions and thought this pregnancy pillow and this foam wedge sounded like the comfiest ways to sleep upright. With the addition of some soft cover sheets and pillow cases, this was my happy place for a solid two weeks.

Something I’d been really concerned about was drains. I had four drains, two on each side, and they scared me. Watching the nurses “strip” them when emptying their contents made me cringe—I just knew they were going to pull out. But my doctor did a great job of pinning them to my sides with super sticky, clear tape and they honestly didn’t bother me that much. Two came at out at my two week appointment, the other two at day 21. Therefore, I spent my third week post-surgery driving my kids to and from school wearing baggy shirts and coats to hide my drains. Oh and did I mention I couldn’t shower? FOR 3 WEEKS. I did everything I could to stay fresh but oh how I missed showering. The day those last drains came out I probably took three showers.

But, in the grand scheme of things, the drains weren’t that bad. Especially since, on day 5, my surgeon called to tell me I was CANCER FREE.

It was maybe the best phone call of my life. My very serious doctor was jubilant as she told me the surgery was a smashing success—they got all the cancer, and my lymph node was clear. She said there was a very large area of DCIS and a tiny, 2mm spot of invasive cancer but they got it all out. She said she didn’t expect I’d need any other treatment, not even tamoxifen. She actually said, “Break out the champagne!” which I didn’t think was a thing doctors said! It was amazing news. And we DID drink champagne.

Road to Recovery

I can say now that, overall, my recovery wasn’t the worst. I gained strength and lost pain gradually over the first four weeks. Here’s kind of a break down of each week:

First Days After: My main goal was NO INFECTIONS. Which is why my doctor said no showering. So I stayed in bed, washed my hands a lot, sanitized any surfaces—like the counter before I did anything with my drains—and had my sheets changed every couple days. I slept a lot. I stayed in bed. I wasn’t in excruciating pain, just uncomfortable a lot of the time, so I alternated the advil/tylenol every three hours religiously—even through the night—until about day 10, before rapidly reducing and stopping all pain medication.

One Week After: I started turning a corner, wanting to get out of bed a bit more, eat dinner at the table, watch a show with the fam in the living room. My biggest pain complaint was a dull ache in the center of my chest, but ice usually helped. I was still moving very slow to prevent the super scary spasms that would happen if I overextended my arms. They didn’t actually hurt that bad, just were super weird and freaked me out. I even went for a drive (I didn’t do the driving) on Day 10 and we stopped for lunch and it felt great. My parents left on day 11, then we were on our own.

Two Weeks After: I’d started doing the recommended exercises every day without pushing my limits. They actually felt really good. I started driving after two weeks, just taking the kids to and from school. I drove very slow and carefully due to my stiff arms, but never felt unsafe. I got my groceries delivered and didn’t do much during the days. I got two drains taken out this week too. I was cleared to lay flatter at night so I removed my wedge from my “nest” in bed. I still propped myself up quite a bit with pillows mostly because getting up from a flat position was a strain. By this point I was very rarely taking any kind of pain killer if at all.

Three Weeks After: School got cancelled! Thanks to the early outbreak of Coronavirus here in Seattle, our schools were all cancelled before anywhere else. I just thank my lucky stars it wasn’t sooner than this or I would have needed Stu home full time right away, as he was still going to work at this point. I had my first expander fill—it was NO big deal and actually made my expanders more comfortable. Doc said I was healing up great and I got those last two drains out at this appointment. I started taking slow walks and I couldn’t believe how exhausted and out of breath I got just wandering around the neighborhood. But it felt good.

Four Weeks After: I had another fill this week—again, no problems—and scheduled my implant exchange surgery for July…due to the coronavirus all non-essential procedures are put off. I was cleared to take longer walks and do anything else that felt good without too much strain. So I did my first Barre3 workout, virtually of course, and it felt great. I did a 30 minute video without weights and could do almost everything! The pregnancy pillow went away this week, the nest was a thing of the past. I’d say I was very much my normal self by this point, still moving with a bit of caution but not noticeably. I put on an over-the-head shirt this week!

Today (6 weeks after): I have most of my arm movement range back. I’m doing Barre3 videos every other day because WOW do they make me sore! After four weeks of doing nothing, my body lost so much strength. I usually walk on the other days unless I’m just too unmotivated because we’re on week two of shelter-in-place due to the lovely Coronavirus. Stu’s working from home full time now and I’m attempting to homeschool the kids which is not my cup of tea.

I think the biggest help in my recovery was having dedicated help—my parents—here for 10 days after. I could completely relax knowing they had everything handled. Stu could go to work, dinners were made, kids were fed and entertained, and I did absolutely nothing. I just healed.

Speaking of Stu, I could not ask for a more supportive and motivating partner. Stu has been my cheerleader and has been fully invested in doctors appointments, research, and help during recovery. I broke down many times throughout this process and he was always there running through the facts and helping me stay focused on getting through the surgery.

Recovery Gear

There were many things that brought me comfort during my recovery. Fuzzy slippers and essential oils and chicken noodle soup. Friends and family from all over the country sent cards and care packages and dinners and gift certificates and it was all overwhelmingly wonderful—I felt so loved and supported!

That said, these are basic things I felt were necessary to keep me comfortable in the first few weeks after surgery.

  • Pregnancy Pillow
  • Foam wedge
  • Extra pillows for elevation and under knees
  • Extra bed sheets so they can be changed often
  • Post surgery seatbelt cover
  • Button up pajamas
  • Alcohol pads for help stripping my drains
  • Disinfectant wipes for any surface I needed to use
  • Electric heat pad for sore muscles
  • Handheld shower – for “half showers” while my drains were still in
  • Shower bench (or a friend said to use a plastic yard chair! genius)
  • Button up shirts, flannels work great
  • Loose, lightweight pants
  • Oversized cardigan sweater/hoodies to hide drains
  • Throat lozenges and hot tea after surgery for dry/sore throat
  • Soft ice packs to tuck into painful spots

Just today, when I realized I’d hit the six week mark, I thought to myself “is that all it’s been?” My surgery feels like yesterday and years ago all at the same time. In the days following surgery, I questioned how in the world I did this to myself. I thought I’d made a huge mistake. But today I feel so normal. Like my old self. Sure there’s some things (two to be exact) I’m still getting used to, but overall, I’m me again. And I know now this is why doctors are so sure of mastectomy as a treatment. They know we will heal up just fine. I know there are more complicated situations, more treatments needed in many cases and I feel so so lucky every single day I only needed this surgery to make me cancer free. But I never thought I’d feel this way so soon and am grateful to my doctors for helping me make this choice and for getting me back to myself again after.

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.