This blog post is the nineteenth in a series about my (and 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; the twelfth post is about my twin sister’s first chemotherapy infusion at Mayo Clinic; the thirteenth post is about foobs, photo shoots and nipple tattoos (my plastic / reconstructive surgery plan); the fourteenth post is a recap of my successful double mastectomy and immediate direct-to-implant reconstruction operation; the fifteenth post is about my surgical recovery and day full of follow-up appointments at Mayo Clinic in Rochester; the sixteenth post is about my one-month-post-surgical-follow-up appointment and preventative baseline ovarian cancer screenings at Mayo Clinic; the seventeenth post is about a suspicious rash I developed a month after my surgery called “pigmented purpura,” my consultation with a gynecological oncologist about ovarian cancer prevention, and my sister’s fifth chemotherapy infusion; and the eighteenth post is about the end of my twin sister’s six neoadjuvant chemotherapy infusions (TCHP). To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.

“The Lord will fight for you; you need only to be still.” Exodus 14:14

I’ve officially hit the three-month mark of surgical recovery and breast cancer survivorship, and my plastic surgeon said things appear to be going well and that I look “awesome.” I am grateful for the prayers of so many who have been holding me up and I do not take this healing for granted! My next appointment will be my 6-month post-op appointment at Mayo Clinic’s Breast Clinic Survivorship Clinic on June 5, 2020, followed by my 12-month-post-op appointment with my plastic surgeon in December 2020. 

Looking to the immediate future, my twin sister heads into her double mastectomy with reconstruction at Mayo Clinic’s Rochester Methodist Hospital this coming Friday, March 20th! We had a day full of appointments with her doctors and surgeons at Mayo Clinic this past week, and it was an amazing reminder of the blessing it is for us to be in the hands of some of the best doctors and surgeons in the world.

Also, her coworkers have been amazing: Last week, they hosted a “bandana/scarf Friday” (pictured above and below). My sister has lost some of her hair due to chemo treatments and she wears head scarfs and hats most days of the week so the lawyers and staffers at her law firm wore head scarfs to support her!! They took a group photo together which is the featured photo at the top of this post and I also wanted to put the photo in here again below because it’s one of the coolest things I’ve ever seen. I went to my sister’s office with two of our best friends and my baby sister to surprise her that morning with bagels because we wanted to be part of the “Bandana Friday,” too 🙂

COVID-19 and breast cancer risks

It’s overwhelming to think about all that’s happened between when our journey began in July 2019 and where we are now, but things like supportive coworkers and amazing doctors at Mayo Clinic remind us that God is good and we can trust Him to carry us through this next chapter–as we look forward to my sister conquering cancer through chemo and surgery in the midst of the most intense viral outbreak modern history has ever seen.

The day before our visit to Mayo Clinic in Rochester, the first case of COVID-19 was diagnosed at Mayo Clinic’s Rochester Emergency Room, which was a bit too close for comfort to us given we were heading to Mayo Clinic 24 hours later. It was a clear reminder that God is in charge and we are not. We are doing everything in our power to keep my sister safe from infection, and in addition to that, we are storming heaven with prayers for her health, the health of the people around her, and for her doctors and surgeons to maintain their health as well so they can carry out a completely successful operation this coming Friday!

Obviously, nobody wants to contract COVID-19, but especially not an immunocompromised chemotherapy patient heading into a double mastectomy like my sister. All that to say, my sister’s mastectomy surgeon, plastic surgeon, and oncologist were all in agreement that it is “very important” for her to work from home this week to minimize any exposure she has to the outside world until her surgery is all over because having to push back her surgery date for any reason–common cold, flu, COVID-19–would be less than ideal given she just wrapped up 6 rounds of chemo that her cancer has been VERY responsive to. Her medical team wants to make sure they get any and all remaining cancer out of her system ASAP! 

In the meantime, instead of being scared, I am trying to remember that we can trust that the God who carried us through all of our cancer diagnoses, treatments, and especially my sister’s less-than-1-percent-of-the-population’s case of ovarian hyperstimulation syndrome will not only carry us through my sister’s surgery, but He will carry us through the outbreak of coronavirus/COVID-19 as well.

Trusting God through stressful times like these is easier said than done, I know, but is definitely worth saying out loud! 

My twin sister’s double mastectomy with reconstruction plan

In light of her awesome response to her chemotherapy treatments, my sister’s surgeons green-lit the plan for her to do direct-to-implant/immediate reconstruction with silicone implants at time of surgery, just like I did! So that is “Plan A” for her surgery coming up this Friday–to have a double mastectomy followed by immediate/direct-to-implant reconstruction and to wake up with reconstruction complete!

“Plan B” for her will be “delayed reconstruction,” which will only occur if she needs radiation treatment for any reason. Delayed reconstruction means she’d have tissue expanders placed instead of implants at time of surgery that would be filled with saline until her “exchange surgery” when they’d insert the implants 6 months down the road. Delayed reconstruction would take place if she needs radiation for any of the following reasons: 1) If she has cancer in her lymph nodes at time of surgery, 2) If there is a “positive margin” / chest wall involvement at time of surgery, or 3) If they find a tumor larger than 5cm at time of surgery. If any of these things happen and radiation is needed, delayed reconstruction will take place which means silicone tissue expanders will be placed at the time of operation. The tissue expanders would be filled halfway with saline solution while she’s on the operating table, then will be filled with more saline solution twice more over the span of 6 months while radiation takes place. Ultimately, the tissue expanders filled with saline will be exchanged with silicone “gummy bear” implants like I have, 6 months down the road.

This is our prayer: For no cancer to be remaining in my sister’s system at time of surgery due to a “complete pathological response!” This way, not only will she wake up with reconstruction complete, but she won’t need any more chemotherapy after surgery! All that to say, here is a preview of my sister’s upcoming week:

• On Thursday, March 19th, she and her husband will head down to Mayo Clinic in Rochester for her to get injected with radioactive nuclear sentinel nodes that will embed in her system before surgery. This nuclear sentinel nodes will show whether or not the cancer has spread to her lymph nodes. If her cancer has spread to her lymph nodes, there is a chance that she’ll need radiation after her operation, and more chemotherapy–a new, targeted regimen called T-DM1–as well. If it hasn’t spread to her lymph nodes (we are praying she has a complete pathological response with no cancer remaining in her system!!!), she will only need some Herceptin, administered via IV or subcutaneously, every three weeks for several months. She will need 3-5 years of Tamoxifen, administered orally, after the operation no matter what.
• On Friday, March 20th, she will go into Mayo Clinic’s Rochester Methodist Hospital to check in for her double mastectomy and reconstruction surgery, which will take 4-6 hours. Woohoo!
• On Saturday, March 21st, she gets to go home! Assuming all is going well with surgical recovery, my sister will wake up and get discharged from the hospital. Also, just like mine!, her bandages will be waterproof which means she can shower as soon as the day after surgery! What!!!
• For 4-6 weeks, she is required to essentially do nothing except read books and watch movies. Like me, it will be difficult for her to slow down and accept help with everything she does, but she’ll learn. 🙂

Q&A with my sister’s doctors and surgeons

On December 3rd, 2019, I had a double mastectomy with direct-to-implant/immediate reconstruction to remove my Stage 0 DCIS breast cancer (you can read the details about my operation here). Because my twin sister had Stage 2A invasive cancer instead of Stage 0 and has already gone through 6 rounds of chemotherapy, her surgical plan is to essentially do the same thing that I did on December 3rd with a few differences. Here are some of the major questions we asked her doctors and surgeons about that:

“Can you remove her port?” 

Because my sister had to go through chemotherapy, she had a port put into her chest at the beginning of her chemotherapy journey. She would like to have it removed during her double mastectomy so she can continue on with any treatment needed after her surgery with an IV instead of a port. So yes–her mastectomy surgeon said she would “love” to remove my sister’s port during the operation so that she can have whatever remaining treatment is to come after surgery through an IV instead of a port!

“What kind of treatment will she need after surgery?”

My sister’s oncologist is going to make a lot of decisions about post-operative treatments as soon as the pathology report comes back from the tissue tested at the time of her operation, but the whole team is “optimistic” that she won’t need radiation after her operation. Rather, she will need either “chemotherapy light”–a regimen called “T-DM1“–or Herceptin, which can potentially be administered subcutaneously instead of with an IV. Either option will be administered every three weeks for several months. The good news is that neither one will suppress her immune system and neither one should cause hair loss, either!

Based on a research study her oncologist cited, T-DM1 is especially effective for HER2+ breast cancer patients, especially if any cancer is remaining at time of surgery that is less than 5mm, and potentially between 2mm and 2cm. Patients in the clinical trial in this category gained benefit from T-DM1 rather than Herceptin by itself.

In addition to T-DM1 or Herceptin, my sister will take Tamoxifen, an oral medication, for 3-5 years after her operation for long-term maintenance. Side effects are minimal with this as well and it shouldn’t cause hair loss, either. Also, because my sister is in menopause due to her chemotherapy treatments, her oncologist said her ovaries should recover or “wake up” at any point in the 1-2 years following the end of her chemotherapy treatments!

“Do patients ever poop on the operating table? And if they do, what happens??”

We asked our plastic surgeon this. She smiled and said: “Yes, this happens, and it’s actually called a ‘Code Brown.'”

NO WAY!!! We laughed.

“Really??” we asked.

“Yes. When it happens, we call a ‘Code Brown,’ clean it up, then we keep going.”

We couldn’t believe it. My sister’s husband asked: “So wait, do you tell a patient that happened after the operation?”

Our surgeon said, “If they ask.”

So I asked, “Did I do that during my operation??”

Our surgeon laughed and said, “No, you did not.”

I was relieved!

“Do you absolutely have to take out some of my sister’s lymph nodes as part of this operation and if so, on one or both sides?”

Yes–because my sister has has invasive cancer on her left side, they will take all of the sentinel lymph nodes on her left side. The average number of sentinel lymph nodes they take on each side is 2.6, but it can range anywhere from 2 to 9. If they find invasive cancer on the right side, they will take the sentinel nodes on that side, as well. “Axial lymph node dissection”–taking more than just the 2 to 9 sentinel lymph nodes–will only occur if cancer is found in one or more of her sentinel lymph nodes. With axial lymph node dissection, there is a 3 to 7 percent risk of developing lymphedema or swelling of the arms. That’s another one of our prayers: That axial lymph node dissection won’t be needed, but if it is, that lymphedema doesn’t happen! 

“Is it possible that cancer can spread through my body other than through the sentinel lymph nodes?”

Our mastectomy surgeon told my sister: “There could be disease elsewhere–for example, in the axillary nodes, but not in the sentinel nodes–but that’s not likely.”

“What is her reconstruction timeline / when can she swing a golf club again??”

Our plastic surgeon said that it’s safe to say this summer my sister can plan to work on her short game! But that, 6 months after delayed reconstruction is a safe bet for the exchange surgery, and 1-2 months after that for swinging a golf club. With immediate reconstruction, it could be as soon as later this summer but may not be a full swing!

“My sister is allergic to nickel, and there is nickel in the implants. Will that be a problem?”

Our plastic surgeon said the casing of the implant should protect my sister from any sort of allergic reaction to nickel that might be in the implants, and that she’s never had a patient have an adverse reaction to nickel in the implants. However, she recognized that there is always a chance a reaction could happen and she’s prepared to cross that bridge when it comes with my sister if needed. 🙂

“What should I know about breast implant illness and breast implant recalls? Do you do explant surgeries?”

According to our plastic surgeon, breast implant illness consists of a “constellation of symptoms” which makes it difficult to formally diagnose. (In January I thought I might have breast implant illness because I developed a mysterious rash and was super fatigued but after going to the dermatologist and getting diagnosed with pigmented purpura I feel better now and the rash is getting much better.)

Our plastic surgeon can count on one hand the number of patients she’s seen with symptoms of breast implant illness, and only one person’s symptoms went away after an explant surgery. All of the other patients’ symptoms persisted. So, she recognizes some women have trouble/problems with implants, and she does do explant surgery if needed. She said she would be happy to discuss that if it’s ever needed–as long as she’s not retired. 🙂

“How long do implants last / when do we need to get new implants?”

Typically, implants last around 10 years. Formally, it’s fairly standard to start getting MRI imaging of the implants at year 3, then every 2 years after that to check and see if the implants are leaking or if they are still viable. There is some contention over whether or not insurance should cover imaging like this, but because we had implants due to cancer in the past, our plastic surgeon said it should be an easier conversation.

“Should we not visit hospital after her surgery?”

There is a possibility visitors will be limited to 1-2 per patient by this Friday 3/20 but at this point our whole family is planning to show up after her operation to check on her and see how she’s doing!

My three-month double mastectomy with reconstruction plastic surgery updates

I got to meet with our plastic surgeon right before my sister did, and we discussed how I’m doing three months after my operation! Highlights of my three-month double mastectomy with reconstruction plastic surgery updates included talking with my plastic surgeon about nipple tattoos. With regard to nipple tattoos, my plastic surgeon said I can do one of three things: 1) Nothing, keeping my scars like they are (lots of women do this!) 2) Get nipple tattoos from licensed plastic surgeons at Mayo Clinic or from a licensed artist anywhere in the country or 3) Buy stick-on nipples to wear. I told her I’m planning on not doing anything because I like my scars the way they are and they’re free! She smiled and said that sounded like a good plan.

We also discussed my gummy bear implants, which are “looking great.” Unfortunately, gummy bear implants can leak, but often you don’t exhibit symptoms for that. So, with regard to monitoring for a leaking implant and/or for breast implant illness, our plastic surgeon said to call for an appointment immediately if any of the following symptoms arise: signs of infection, redness, tenderness, changes in shape, new lumps or bumps, or sudden weight changes. If anything like this happens she wants to see me immediately. Otherwise, we have an appointment for December 2020 for my one-year checkup!

Also, one thing Mayo recommends is antibiotics before any invasive dental work because if an infection takes place the infection could settle on the implants and put my life in danger. 

We also discussed my rash, which she thought was weird. But she was glad dermatology took care of it (for the most part)!

Next steps

We so appreciate prayers for my twin sister who goes in for her double mastectomy with reconstruction at Mayo Clinic in Rochester this Friday! We are praying specifically and boldly for the following, and will post updates as soon as she’s settled back at home!:

• Prayers for no cancer to remain in her system at time of the operation!
• Prayers for protection from COVID-19 for her, her caretakers, and for her doctors, surgeons, and nurses! (and for everyone in the world but specifically for these people :))
• A verse that has been especially encouraging: Ephesians 3:20-21: That God, who is “able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,” would heal her completely!!!