This blog post is the thirteenth in a series about my (and now, my twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. The first post is about my first mammogram ever; the second post is about my consultation at Mayo Clinic’s Breast Clinic; the third post is about my stereotactic core biopsy at Mayo Clinic’s Breast Clinic; the fourth post is about my diagnosis with “Stage 0” DCIS breast cancer; the fifth post is about my in-person DCIS diagnosis at Mayo Clinic, beginning thoughts on my surgery timeline, and discovering that my twin sister might have breast cancer, too; the sixth post is about my twin sister’s invasive ductal carcinoma clinical stage 2A breast cancer diagnosis; the seventh post is about my breast MRI and two ultrasounds to investigate “suspicious” spots on my right breast and liver; the eighth post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic; the ninth post is about preparing for my twin sister’s chemotherapy appointments, including details about her egg banking procedure in the city; the tenth post is a summary of my sister’s ovarian hyperstimulation syndrome and visit to the emergency room; the eleventh post is a summary of my double mastectomy surgery plan scheduled to occur on December 3rd, 2019 at Mayo Clinic’s Methodist Campus Hospital in Rochester; and the twelfth post is about my twin sister’s first chemotherapy infusion at Mayo Clinic. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
“Breast cancer will change your life.” “Free boob job!” “You’re a cosmetic patient now.” “Are you going to get nipple tattoos?” “I know your faith is super strong and that’s great!, but seriously, this is CRAZY!”
The quotes above have been said to me at various points since my breast cancer diagnosis on September 6th–the day my 30-year-old life changed forever. Now I’m a breast cancer patient with DCIS on both sides of my chest, my double mastectomy is only 16 days away, and I’m starting to get anxious. It’s going to be weird to wake up without feeling in my entire chest. It would be great to wake up cancer-free, but I’m aware that there’s a 10 to 15% chance I might have invasive cancer that would require chemo or hormone therapy after my operation. I’ve also heard you can have shooting pains in your chest and down your arms for quite some time following double mastectomy surgery. Lymphedema is something that could happen, meaning my arms might swell up to twice their normal size due to the removal of lymph nodes under my arms. Not to mention I’m getting my boobs chopped off. Which is kind of a big deal. In addition to processing these potential negative side effects of my forthcoming double mastectomy surgery and learning how to trust God in the midst of more fear and uncertainty than I’ve experienced in my life to date, I have had to make some big decisions about breast reconstruction in recent weeks. (I meant to get this post up earlier, but we actually got the call that my twin sister had been diagnosed with breast cancer in the middle of my appointment with my plastic surgeon back in September and that’s when life kind of went off the rails.)
Back when I was initially diagnosed with DCIS and when I met with my primary doctor at Mayo, she encouraged me to consider a bilateral mastectomy and wanted to make sure I had the option to meet with two surgeons: First, a surgeon who would carry out my double mastectomy; Second, a plastic surgeon who specializes in breast reconstruction surgery. She booked me appointments with two surgeons who work together in the operating room at Mayo Clinic on a regular basis. After much reading, research (I have to give a shoutout to Paige More & “The Breasties” — I read their entire website to figure out what questions I should be asking about breast cancer, mastectomy, and reconstruction!), and meetings with my primary doctor, plastic surgeon on September 26th (we are pictured heading into that appointment in the featured image above), and mastectomy surgeon on November 1st, I have a plan: I decided with my surgeons and primary doctor that we’re going to attempt to do a skin-sparing double mastectomy followed by “direct-to-implant” breast reconstruction immediately following my double mastectomy.
All that to say, here is my double mastectomy and direct-to-implant reconstruction plan in a nutshell:
- On Monday, December 2nd, I’ll head down to Mayo Clinic in Rochester to get injected with a radioactive nuclear sentinel node that will embed in my system before surgery. This nuclear sentinel node will show whether or not the cancer has spread to my lymph nodes or beyond my milk duct. There is a 10-15% chance that it has, which means I’d need chemotherapy or Tamoxifen after the operation. That Monday night, Forager Brewery has an open mic scheduled and there’s a chance I’ll be able to convince my husband to bring his guitar and play while we’re there!!
- On Tuesday, December 3rd, I go into Mayo Clinic’s Methodist Campus Hospital in Rochester to check in for my double mastectomy and immediate reconstruction surgery, which will take 4-6 hours. Woohoo!
- On Wednesday, December 4th, it’s my 31st birthday! On this day–the day after my double mastectomy with reconstruction–I will wake up and get discharged from the hospital. I asked my surgeon to sing me “Happy Birthday,” and she’s considering it even though she looked terrified when I asked. 🙂 I can’t believe they’re sending me home the day after this major of a surgery!!! Not only that, but my bandages will be waterproof which means I can shower the day after surgery! What!!!
- For 4-6 weeks, I’m required to essentially do nothing except read books and lift nothing heavier than a milk carton. It will be difficult for me to slow down and accept help with everything I do but I’ll learn. 🙂
Here are some questions I have asked and have had answered about breast reconstruction surgery over the past couple of months during meetings with my doctors and surgeons that I hope are interesting or helpful or encouraging to anyone else on a similar journey:
Do you have to do breast reconstruction after a double mastectomy?
No–I’ve learned breast reconstruction surgery is totally optional. But, given that a double/bilateral mastectomy means having all of the breast tissue removed on both sides of the chest from the collarbone down to the bottom of the rib cage (cancer sucks!!), most women choose to do reconstruction of some kind or to “go flat,” which means to undergo a complete double mastectomy without implants of any kind. For women that choose to pass on reconstruction, there are companies that sell fake boobs in bras that you can wear on a daily basis. I know several women who do this and love them!! (I affectionately call these fake books “foobs.” I know people also call silicone and tissue implants “foobs.” So I just call all of the fake boobs “foobs.”)
I considered “going flat” as well–and will continue to consider it actively if for some reason something goes wrong with my direct-to-implant reconstruction while I’m out cold. I’ve also considered it because I’ve heard from several different people that breast reconstruction surgery can be a nightmare: One of my friend’s moms said tissue reconstruction recovery was immensely painful; and one of my cousins has silicone breast reconstruction implants that were just recalled. Yikes! All that to say, if for some reason reconstruction doesn’t work out for me–side effects and events including if my implants are recalled, if I have an allergic reaction to them, if I develop an auto-immune disease as a result of them, if I get tired of replacing them every 5-10 years, or if I develop large-cell lymphoma as a result of having them (these are all possibilities–very small, but possibilities nonetheless), I’ll be going flat eventually no matter what!
There is a list of people that have reached out to me who I’ve been meaning to call to talk about all of the pros and cons of breast reconstruction but I haven’t gotten around to it–mostly because I’m terrified of hearing more horror stories and at this point I’m not sure if learning more information will help me or hurt me. I stopped Googling things a long time ago thanks to the advice of my doctors and nurses which has saved me from much stress.
For women who choose to do breast reconstruction, there are two main types of breast reconstruction: tissue reconstruction and silicone implants. Also, there are two choices for placement of the implants: over or under the pectoral muscle. AND, there are two reconstruction timelines to choose from: immediate and delayed.
Here are the questions I worked through while trying to decide what I was going to do for my breast reconstruction, along with answers I’ve gathered along the way in hopes they’re helpful and/or encouraging!
What is the difference between tissue reconstruction and silicone implants?
Tissue reconstruction is when your surgeon takes tissue from your abdomen or other parts of your body and builds it into new breasts for you. But that is not an option for me: My doctors looked at me, grabbed at my stomach tissue, legs, and butt, and told me that tissue reconstruction was, simply, “not an option.”
“We don’t have much to work with here,” my plastic surgeon said.
“So you’re telling me that I’m being penalized for being fit??,” I asked.
“No!,” she said. “That is a very good thing. Just not for this!”
“So what if I start eating tons of donuts before my surgery??” I asked.
She smiled. “Let’s not go down that road!”
Right!
Tissue reconstruction requires enough body tissue to reconstruct breasts–and because I’ve lost 15 pounds since my breast cancer diagnosis (due to stress no doubt) and I was slim to begin with, I don’t have any extra tissue to use for this purpose. Tissue reconstruction is the newest method of breast reconstruction, and it is said that it feels the most natural, but because it’s not an option for me right now and I’ve heard that it limits what you’re able to do with your core muscle after the fact–especially after TRAM flap reconstruction–I’m not thinking about it too much. My plastic surgeon said technology might evolve to a place where tissue reconstruction would be a more viable option for me in a few years, but for now, I’m sticking with silicone implants that can hopefully be implanted at the time of my double mastectomy.
What kind of silicone implants should I get?
There are three kinds of silicone implants my plastic surgeon showed me ranging in density from more liquid-y to more firm. There is one kind they called “gummy bears,” and my plastic surgeon said those are her favorite kind. So I’m going to use those!
What does pre-pectoral/”over the muscle” mean?
Pre-pectoral or “over-the-muscle” means the implant will go over my pectoral muscle. Historically, when reconstructive implants were first a thing, the implants went below the pectoral muscle so the pectoral muscle would hold the implant in place. As time passed, over the muscle implants have become more of a prevalent option thanks to the innovation of Alloderm–or, repurposed cadaver skin–holding the implants in place. This way, the pectoral muscle doesn’t have to be involved–which, for some women who work out a lot had mentioned was irritating–because when the pectoral muscle is over the implant, it can twitch and move the implant around on occasion. Implants placed over the pectoral muscle and held in place with Alloderm is a little creepy–I mean, someone else’s skin is going to be inside my body and I could have an allergic reaction to it. But hey. It’s just another miracle of modern medicine, amirite? #YOLO!
Breast reconstruction can be immediate, or it can be delayed/staged. What are the pros/cons of each?
The most popular reconstruction option is delayed reconstruction. This means you get tissue expanders placed at the time of your mastectomy which are filled with saline over the course of several months until they are expanded to the size you’d like your implants to be. Then you have a second “exchange surgery” where your tissue expanders are switched out for the implants. My plastic surgeon let me know that a majority of women do the delayed reconstruction with tissue expander option because cosmetically it usually works out better than the direct-to-implant option does.
“Cosmetically, a lot of women have to come back in to have their direct-to-implant surgeries modified,” my plastic surgeon told me. “Women aren’t always completely satisfied with the shape of the implant, so we have to go in and do some liposuction to round out the implant. Other times, scar tissue can build up and we have to go in and take care of that.”
To be completely honest, I’m not convinced that I’ll have to go back in at all. Until my implant has to be replaced. And I’m willing to take the cosmetic risk to save myself multiple trips back and forth to the surgeon to have my tissue expanders filled with saline–I would love to wake up with my silicone implants ready to go even if they aren’t perfectly symmetrical! I know immediate reconstruction can prolong recovery by a couple of weeks and there are fairly strict requirements for immediate reconstruction to occur successfully at the time of the mastectomy (including physical fitness and the surgeons’ skill level), but my primary doctor told me if I start doing some more push ups at the gym I’ll be just fine! 🙂 And my surgeons are literally the best. So I’m doing lots of push ups!
Obviously, I’m aware that there’s a possibility I’ll wake up with tissue expanders and have to opt for the delayed reconstruction route if anything goes wrong while I’m under and direct-to-implant won’t work. I’m also aware that if direct-to-implant works I might still need to go back in for a cosmetic tweak or two.
Breast reconstruction doesn’t last forever.
People told me it’s important to like your plastic surgeon because it will likely become a lifelong relationship. I was confused at first but now I know that’s because silicone implants need to be replaced at least once every 10 years, and sometimes more often than that. “What do you think about breast reconstruction–should I definitely do it?” I asked my primary doctor, back when this journey began. “Oh, definitely do reconstruction,” she said. “They have lots of options for you and a doctor here actually just had reconstruction with the doctor you’re going to be working with and had a great experience.” Awesome! Except it wasn’t going to be just a one-time experience like I originally thought: Reconstruction is a repeat and continual experience! Given the fact that my doctor recommended I do reconstruction and I had a referral from another Mayo doctor that worked with my Mayo plastic surgeon, there I went down the road of reconstruction. So it’s a good thing that I love my doctor(s). They are the best. 🙂
“How often will I need to come back in to see you?” I asked my plastic surgeon.
“Annually at first,” she said. “We will keep tabs on how you are doing and when we’ll need to replace the implant. It’s often times less than 10 years. Also, there are times when women’s implants will flip over on them and they have to come see me to flip them back over.”
Wait, what???
I laughed in spite of myself. “What do you mean??,” I asked. “Like, they’re on a roller coaster and they go through a loop and their implant flips over?”
She smiled. “I wish that were the only reason we saw women for this kind of situation, but not exactly. Some contact and high-impact sports can cause problems, and even stomach sleepers sometimes have them flip over. So you have to be careful.”
“And you have to fix it for them? Do you have to do surgery again?” I asked.
“Occasionally women can flip them on their own, but we usually recommend you come in and see me,” she said. “Sometimes I can do it here in the office, other times we have to go back to the OR.”
Oh boy, I thought. I’m a stomach sleeper. That will be an interesting habit to change. And so much for my dreams of playing rugby. Not that I ever had them, but I for sure can’t have those dreams now! Two questions I thought of after the fact: Will I ever be able to do the worm at dance parties again? (Yes, I can do it, and yes, I would miss doing it.) And, Will this screw up my golf swing? If so, I need to mentally prepare for that before summer comes around!
Nipple-sparing, skin-sparing, and total mastectomies are all options.
Like I mentioned in my double mastectomy surgery post, I am going with a “skin-sparing” mastectomy, which means I am getting rid of my nipples. This choice was made because if I were to keep my nipples there is a chance the cancer would come back in the nipple tissue. Not to mention, I wouldn’t have feeling in my nipples anymore, anyway.
“What would you do in my situation? Would you keep the nipples?” I asked my plastic surgeon.
She thought for a moment.
“I think it comes down to: What’s more important to you: Keeping your nipples or keeping them knowing there’s a risk cancer could come back in them down the road?”
I looked at my husband, who was thinking the same thing I was. He shook his head. “Why risk it?” he said.
“Nope! Bye nipples!” I said.
“I actually had a patient come back in just a few months ago who had to have her nipples removed because cancer came back in them after her mastectomy years ago,” my plastic surgeon said.
Whomp, there it is, I thought. Decision made!
“Can you do nipple tattoos?,” I asked my plastic surgeon.
She laughed. “Yes, but I couldn’t make them look nearly as beautiful as they are now,” she said.
So we left that on the table for now.
I went on to have a lively debate about nipple tattoos with my twin sister several weeks later who is currently undergoing chemotherapy for her invasive stage 2A breast cancer. My sister is fairly convinced she’s going to get nipple tattoos down the road after her chemotherapy and surgeries are complete, but I’m not as convinced. I already have one tattoo that I LOVE on my foot (need a tattoo artist? Hire Allie Sider at Logan Square Tattoo. You won’t be disappointed :)). However, getting some more tattoos on my foobs just isn’t at the top of my budget or my priority list.
My husband and I often discuss money in the form of Chipotle burritos. Using our current situation as a case study, this is how our conversation went: “We could pay for me to get nipple tattoos, or we could buy a whole bunch of burritos.” Let’s just say that, if the decision ultimately is between nipple tattoos and burritos, I’m going to choose the burritos! (And my husband is in 100% agreement about this. Not that it’s his decision. But some of our doctors have made sure to ask my husband in our meetings, “Now, what do you think about all of this? Are you in agreement about everything we’ve discussed?”)
Does silicone leak into your system over time?
The short answer: “No.” However, my plastic surgeon told us about how in the 1990s and early 2000s there were saline implants that were recalled. And then, this year, there were textured silicone implants that were recalled by the FDA due to a link to Breast Implant-Associated Anaplastic Large Cell Lymphoma (BIA-ALCL). But the smooth implants they’re using now haven’t been recalled and should be totally fine. Knock on wood. (Nervous laughter. Haha.)
“Is it possible to retain feeling in my chest at all or not?,” I asked. (I read about a technology called Resensation that can help restore our sensation during or after a mastectomy.)
She thought for a moment. “We haven’t done that in any operations yet,” she said. “The reason being, if you do a nerve graft to the breast after a mastectomy, the nerves have to come from somewhere. So, if you want sensation in your breast, you’re going to lose it someplace else.”
That was a good point. I said I would stay tuned! 🙂
“What size do you want to be?” and aftercare
I said I wanted to be the same size I am now, ideally–and smaller if that would make the direct-to-implant process go more smoothly. My doctor was on board with that, and ordered a range of implants–from 200cc’s to 400cc’s–that they’ll choose from at the time of the operation.
After we agreed on that, my surgeon said she looked forward to seeing me in December–December 3rd was the tentative date she’d discussed being available with my mastectomy surgeon. And sure enough, here we are!, committed to that date two months later. She shook my hand and went on her way, as I sat down to sign all of the consent forms with the nurse. We also heard about aftercare–after the mastectomy and reconstruction, you have drains attached to either side of your chest that drain excess fluid for approximately 10 days. My husband gets to help change those. Lucky him!
My topless photo shoot
After our aftercare conversation, the nurse told me that someone would be coming to get me to take a few photos. While I totally understand that breast reconstruction surgery isn’t the same as voluntary augmentation–it’s not like I chose to be here, after all!–I definitely felt like a cosmetic patient when a nurse came in with a camera and asked me to come with her across the hall. We walked into a photo studio of all places! It was complete with lighting rigs, a green screen, and an “X” made of tape on the floor where I was supposed to stand. I was transported back to my days as a magazine editor when we’d have photo shoots with our feature story subjects. But this time, instead of ordering the photos, I was on the other side of the camera. Why? Because I had breast cancer. Never did I ever think I’d be in a situation like this. I laughed out loud.
“Okay, go ahead and stand there on the X,” the nurse with the camera said. “We’re going to take a few photos from the waist up. We like to have photos of the before and after on hand for all of our patients!”
Oh, boy. So I was about to pose for a topless photo. This was hilarious!!!
“Okay!” I said. “I’m ready for my closeup! It’s like I’m a centerfold model!”
The nurse laughed. She thought that was funny. Then she took a series of photos from both sides and from the front.
“We’ll take more of these photos after the operation,” she said. “Great job!”
I smiled and walked back into my room to get dressed. What an adventure!!!
Our drive back from Mayo Clinic in Rochester on September 30th was gorgeous (pictured above). The sunset was amazing and was a great reminder of God’s faithfulness and promise that his mercies are new every morning 🙂
Back to reality
This concludes my pre-surgical blog posts–I plan to write a post as soon as I’m recovered enough from my double mastectomy to remember what my name is. There’s still a lot up in the air–I might have invasive cancer, the direct-to-implant might not work, I might have an allergic reaction to the implants, the surgery might cause me to be so tired I can’t even look at a laptop for weeks–there’s just a lot to worry about and not know about! But it’s not my job to worry, because who by worrying can add even an hour to their life 😉 (Luke 12)? God isn’t surprised by any of this, and Jesus has already gone before me into every situation and is with me every step of the way. That’s a blessing I don’t take for granted. Still: THANK YOU for your continued prayers!
This blog post is the thirteenth in a series about my (and now, my twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. The first post is about my first mammogram ever; the second post is about my consultation at Mayo Clinic’s Breast Clinic; the third post is about my stereotactic core biopsy at Mayo Clinic’s Breast Clinic; the fourth post is about my diagnosis with “Stage 0” DCIS breast cancer; the fifth post is about my in-person DCIS diagnosis at Mayo Clinic, beginning thoughts on my surgery timeline, and discovering that my twin sister might have breast cancer, too; the sixth post is about my twin sister’s invasive ductal carcinoma clinical stage 2A breast cancer diagnosis; the seventh post is about my breast MRI and two ultrasounds to investigate “suspicious” spots on my right breast and liver; the eighth post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic; the ninth post is about preparing for my twin sister’s chemotherapy appointments, including details about her egg banking procedure in the city; the tenth post is a summary of my sister’s ovarian hyperstimulation syndrome and visit to the emergency room; the eleventh post is a summary of my double mastectomy surgery plan scheduled to occur on December 3rd, 2019 at Mayo Clinic’s Methodist Campus Hospital in Rochester; and the twelfth post is about my twin sister’s first chemotherapy infusion at Mayo Clinic. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
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