My Breast Cancer Journey Part 20: My Twin Sister's Double Mastectomy with Reconstruction Operation at Mayo Clinic Was Awesome!

My Breast Cancer Journey Part 20: My Twin Sister's Double Mastectomy with Reconstruction Operation at Mayo Clinic Was Awesome!
Here we are at Mayo Clinic's Rochester Methodist Hospital on the morning of my twin sister's double mastectomy with reconstruction operation! My mom, baby sister, me, my twin sister, dad, and my twin sister's husband all lined up in our matching shirts for the same type of photo we took before my operation in December!

This blog post is the 20th 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 1st post is about my first mammogram ever; the 2nd post is about my consultation at Mayo Clinic's Breast Clinic; the 3rd post is about my stereotactic core biopsy at Mayo Clinic's Breast Clinic; the 4th post is about my diagnosis with "Stage 0" DCIS breast cancer; the 5th 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 6th post is about my twin sister's invasive ductal carcinoma clinical stage 2A breast cancer diagnosis; the 7th post is about my breast MRI and two ultrasounds to investigate "suspicious" spots on my right breast and liver; the 8th post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic; the 9th post is about preparing for my twin sister's chemotherapy appointments, including details about her egg banking procedure in the city; the 10th post is a summary of my sister's ovarian hyperstimulation syndrome and visit to the emergency room; the 11th 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 Rochesterthe 12th post is about my twin sister's first chemotherapy infusion at Mayo Clinic; the 13th post is about foobs, photo shoots and nipple tattoos (my plastic / reconstructive surgery plan); the 14th post is a recap of my successful double mastectomy and immediate direct-to-implant reconstruction operation; the 15th post is about my surgical recovery and day full of follow-up appointments at Mayo Clinic in Rochester; the 16th post is about my one-month-post-surgical-follow-up appointment and preventative baseline ovarian cancer screenings at Mayo Clinic; the 17th 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; the 18th post is about the end of my twin sister's six neoadjuvant chemotherapy infusions (TCHP); and the 19th post was about my twin sister's double mastectomy and reconstructive surgery plan (amid the global outbreak of COVID-19). To keep tabs on new posts, sign up for the "A Daily Miracle" email list at this link.

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Here is my sister with her husband, all ready for surgery at Mayo Clinic's Rochester Methodist Hospital!

My twin sister was diagnosed with invasive HER2+ breast cancer in September 2019. She went through 6 rounds of neoadjuvant chemotherapy--a regimen called TCHP--at Mayo Clinic in Rochester, Minnesota, to destroy her Stage 2A invasive ductal carcinoma breast cancer, from November 2019 to February 2020.

Last Friday, March 20th, she went into the operating room with the same surgeons that did my double mastectomy with reconstruction operation in December 2019. Given my sister had to go through chemotherapy before her operation and her cancer was invasive leading into the operation, we knew her operation wasn't going to be exactly the same as mine--but our surgical plans going in looked pretty much the same: We hoped and prayed that, like mine, 1) Her operation would remove all of her cancer and 2) That she'd be able to go through with direct-to-implant reconstruction.

The short story is that God answered our prayers!!! (The long story follows in this 4,000+ word blog post.) And the five key takeaways from my sister's operation and pathology report are:

1) Her double mastectomy removed all of her cancer, including the only cancer that remained following her neoadjuvant / pre-operative chemotherapy, which was two very small spots that were connected to her original tumor!!!

2) There were clear margins and there was no lymph node involvement, so she won't need radiation!!!

3) Her plastic surgeon was able to do direct-to-implant reconstruction!

4) Because there was some cancer remaining in her left breast at the time of surgery--a 1.1cm spot and a 9mm spot that were initially attached to the original tumor--she will need 14 more infusions of chemotherapy starting every three weeks in May: a new, targeted regimen called T-DM1. Clinical research trials prove T-DM1 after surgery reduces the risk of recurrence of invasive breast cancer by 50% as compared to trastuzumab (Herceptin) alone, so my sister's oncologist prescribed her with this! My sister's oncologist calls this "chemotherapy light" because the side effects are minimal compared to what she's already been through with TCHP.

5) In addition to 10 1/2 months of T-DM1 (14 infusions 3 weeks apart starting in May), my sister will also take a daily dose of Tamoxifen for 3 to 5 years to minimize her risk of recurrence (Tamoxifen manages the amount of estrogen in her system).

Our prayers were mostly answered--while it turns out there was some cancer remaining in her breast tissue at time of surgery, the bottom line is her cancer has all been removed now thanks to surgery and her reconstruction is complete. :) We were hoping and praying for a "complete pathological response" at time of surgery, which means her pre-operative / neoadjuvant chemo would have destroyed all of her cancer, but it's okay because we know God's plans are perfect and His timing is never late. So we trust His plans and purposes for "Phase 3," which is what my sister affectionately calls T-DM1 and Tamoxifen. Those infusions will begin as soon as my sister is recovered from her surgery!

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Here is my twin sister with her husband at Mayo Clinic all ready for her pre-operative appointments last week!

Preparing for surgery

My twin sister went down to Rochester with her husband last Thursday for some pre-operative appointments including her sentinel node injections which consisted of six injections in both breasts. The injections were successful! My mom, dad, baby sister, and myself arrived that evening and we got Chick-fil-A to eat for dinner. We called the hospital the night before surgery and found out her checkin time was 10am, which means she was the second case of the day--this allowed her to wake up slowly and have her coffee before heading into the OR!

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Here is my sister all ready to go into her sentinel node injection the day before her surgery!

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Before heading over to the hospital to drop my sister off for surgery we prayed as a family in the hotel!

Double mastectomy surgery check-in at Mayo Clinic in Rochester

Before my sister headed into surgery last Friday, we prayed as a family in the hotel. (A few of us cried.) Then we headed over to surgery checkin at Mayo Clinic's Rochester Methodist Hospital across the street! As you can see in the photo below and in the featured photo at the top of this post, I purchased my sisters matching cheetah-print sweatpants from Express. So we wore those to the hospital together with our matching tshirts celebrating our Mayo doctor team :) You gotta have some at least some fun with all of this cancer business, right?!!?

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I got my sisters matching animal print pants from Express for us to wear to surgery checkin!!!

Because of COVID19, things were a bit different for my sister's surgery than they were with my surgery: For example, they only allowed two visitors with my sister in the surgery prep floor of the hospital and in her hospital room afterward (Mayo Rochester changed their visitor policy to zero visitors two days after her surgery). So, instead of the whole family going upstairs, my sister's husband and I headed up with her to surgery prep.

She answered all of her nurse's questions and got her IV started with no hiccups or problems. We found out she was the second case of the day as her surgeons were in another operation that morning, so around 11am she was taken away on a stretcher to meet her anesthesiologist in pre-op.

We took her bags of clothes with us and dropped off some papers for a research study my sister is a part of at the Breast Clinic and headed back to the hotel to wait.

My sister told me that she had the same anesthesiologist I had for my operation, and that he remembered me! :) Everyone in the OR told her she was in "very good hands," and she was happy to hear that.

Surgical updates

An hour after we left the hospital, my sister's husband got the following text update from the OR:

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So we knew her operation was underway!

I tried to work for the rest of the afternoon on my laptop but found myself praying most of the time in an attempt to ward off anxiety. At least I didn't throw up like my sister did when she found out I was in the operating room in December!

Four hours into my sister's operation last Friday, her husband got this text message:

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And then, a call from my sister's surgeon:

"The surgery went beautifully. It was a gold star pathology report. No signs of residual cancer in either breast, no signs of cancer in the lymph nodes. Plastic surgery has some work ahead of them now as they're going to attempt direct-to-implant reconstruction."

HALLELUJAH!!! ALL OF OUR (and our prayer warriors'!) PRAYERS HAD BEEN ANSWERED!!! WE COULDN'T BELIEVE IT!!!

We cried, screamed, jumped up and down, danced, called family, rejoiced, cried some more, and pumped our fists in the air. I felt like doing the worm but still wasn't sure if that was a doctor-approved activity for me 3.5 months after my own operation.

We couldn't stop smiling. Then, at the end of 5 hours, my sister's husband got this text message:

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Followed by a call from her plastic surgeon:

"We are finishing up now. We were able to do the direct-to-implant, and she looks awesome. She's in recovery now."

WE COULDN'T STOP SMILING!!! This was all too good to be true!!! All of our prayers--in line with Ephesians 3:20-21, the verse my sister asked us to pray for her--were answered!!! The surgery removed all of her cancer, and her direct-to-implant reconstruction was a success! Here is the text we sent out to family and friends:

PRAISE UPDATE & MIRACLE REPORT!: She is out of surgery and THE CANCER IS ALL GONE!!!!! PRAISE JESUS!!!!! Not only that, but the plastic surgeon was able to do direct-to-implant reconstruction which means her double mastectomy and reconstruction are COMPLETE as of today!!!!!!! No more surgery will be needed!!!!!! Thank you so much for your prayers—in the words of her surgeon: “The surgery went beautifully. It was a gold star pathology report. No signs of residual cancer in either breast, no signs of cancer in the lymph nodes.” GOD IS GOOD!!!!!

Prayers for healing answered!

My sister is going through a devotional called "ROAR" by Louie Giglio in her YouVersion Bible app, and the morning of her surgery, she wrote this note:

"'Wherever you are today, whatever miracle you need, bring that to Jesus. Lay it before the Way Maker and trust that He is working on your behalf to bring you hope and peace.' Praying today for no cancer left at surgery and successful reconstruction surgery !!!"

I teared up when I read this, because it showed me (again) how strong her faith was. I knew that no matter what happened, she'd praise God anyway, but to know she had the faith to ask Him to heal her of her cancer entirely AND that He would allow her to have immediate reconstruction was an emotional moment for me. To read this having just received the news that surgery removed all of the cancer was overwhelming. She asked for healing in faith and He'd answered!! Not to mention, this was all in the midst of a global outbreak of COVID19.

Hallelujah!!!

My sister's husband ran up to the hospital room my sister was assigned to make sure he was there to meet her as soon as she was released from recovery. One of our friends asked if he could videotape her response when they told her she was cancer-free after her operation, so he did!:


 

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Here is my sister eating chicken stir fry 2 hours after being released from surgery, her dinner of choice!

As you can see in the video above, my sister was pretty chatty after she woke up from surgery. She talked so much that she completely lost her voice the day after surgery! The great news is she also had a huge appetite--she ordered a full plate of chicken stir fry and sherbet that her husband fed her that night! Then she took 3 laps around the floor of the hospital. It was awesome! She felt a little nauseous after all of her walking but as you can see in the photo below she was doing just fine when we left her alone for the evening :)

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Here is my sister at the hospital after we had to leave her the night after her surgery--she talked more than we've seen her talk in her whole life and she sent us selfies until she fell asleep! Haha!!

Discharged from the hospital! 

My sister spent less than 24 hours in the hospital after her surgery!!! A member of the surgical team came to see her the night of her operation, and the plastic surgeon and two residents came to visit my sister the morning after her operation to check on her. The plastic surgeon and residents said she's looking "great," and said they would be in touch with regard to removing her drains (she has one on each side). Because of COVID19, there was a high likelihood we'd need to remove her drains at home instead of having a nurse do it at Mayo.

So her husband got all of the instructions from the nurse before we left: Snip the stitches from the drain in each armpit, and pull the foot-long drain out. He felt confident: "I watched my dad remove some stitches from my knee when I was a teenager so this should be no problem!" (Nervous laughter.)

Spoiler alert: my sister's husband removed her right drain at home today no problem and plans to remove the left one on Monday! So he's basically a doctor.

My sister was in the hospital for less than 24 hours after her operation before they released her to the wild (to go home!). We were shocked--she didn't even get out of the operating room until 6pm then she was walking into her house at 11am the next day (as shown in video below). Her pain has been manageable with Oxycodon, Tramadol, and Tylenol, and she's on an antibiotic to prevent infection in her drain sites.

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Just like in my hospital room after my surgery, my sister had a photo of Jesus on the wall of her hospital room! There is a photo of Jesus in all hospital rooms at Mayo Clinic!!!

My sister's surgical pathology report: "Cured and cancer free!"

My sister got a call from her surgeon four days after her surgery, letting her know that her pathology report was complete. The mastectomy surgeon told my sister that she was very upset that she couldn't see my sister to give her a hug after surgery. She also said it was a really good thing they got my sister in for surgery last week because they basically got "shut down" at Mayo this week because of COVID19. Before she hung up, she told my sister that she sends us all her love and will never forget us. (This made us all cry happy tears.) She did say to let her know when we're going back to Mayo when this is all over in a few months so we can wear our t-shirts and "get a proper photograph." We got one photo with her a few weeks ago but she wants one with our entire family!

All of my sister's cancer was removed at time of surgery--so, in the words of her surgeon, my sister is now "Cured and cancer free!!!" Here are the main takeaways from her post-surgical pathology report:

  1. My sister is surgically "cured and cancer free!"
  2. There were two spots of cancer remaining in her breast that didn't show up on the frozen pathology report but appeared on the final pathology report. Those two spots were removed at the time of surgery--a 1.1cm spot and a 9mm spot. Both spots were attached to the original tumor, so no new cancer was found (woohoo!)
  3. Because there was some cancer left at time of surgery, more treatment will be needed to minimize risk of cancer recurrence.
  4. There was no cancer in the lymph nodes!!!!! YAY!!!
  5. Her breast tissue had clear, 5mm margins!

The bottom line of all of this means that the doctors and surgeons are confident her cancer has not spread anywhere else in her body!!! We rejoice in that truth!! So, while my sister is now cancer-free, there was some residual cancer in her left breast. At first, the surgical team and frozen pathology team thought the tumor may have been completely gone at time of surgery, but after the final pathology interpretation, they found out that the chemotherapy didn't destroy all of her cancer before surgery like we'd originally hoped. So the oncologist made a plan to eradicate any and all chances of this cancer ever coming back!

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Here is my sister heading home from the hospital with her husband, with her "chest buddy" mastectomy pillow from our friend!

My sister's call with her oncologist and final pathology report

My sister had a video call with her oncologist on Friday at home because Mayo is discouraging any sort of in-person visits at their clinic in Rochester. According to my sister's oncologist, my sister's neoadjuvant--or, pre-operative--chemotherapy was effective in eliminating most of the original tumor: It was over 5cm at the beginning of treatment, and there was only 2cm total remaining at time of surgery! Also, there was only "20% cellularity" of the tumor that remained in the tissue that was removed which was great news. Also, no new cancer was found--both spots were connected to her original tumor!

According to my sister's oncologist, 75% of HER2+ breast cancer patients who go through TCHP have cancer left at the time of surgery, so this wasn't a surprise to him. "This is a very good report!" he said.

My sister's "Phase 3" chemotherapy plan: T-DM1 and Tamoxifen

My sister's oncologist said "nobody really knows" what's going to happen at Mayo Clinic in coming weeks amid the outbreak of COVID19, but he's going to plan for my sister to start T-DM1 infusions at Mayo Clinic in 8 weeks in addition to taking a daily dose of Tamoxifen in 4-6 weeks.

My sister's oncologist wants her to heal up from surgery for a couple of months, then get started on T-DM1T-DM1 will be 14 treatments: 1 treatment every 3 weeks. T-DM1 infusions only last 2 hours (her TCHP treatments lasted 6 hours each)! Side effects of T-DM1 are that it can cause teensy bit of neuropathy, fatigue, and diarrhea. T-DM1 can also be a bit rough on the heart, so she will have ultrasounds on a regular basis--every three months--throughout her treatments to ensure her heart is pumping normally! 
T-DM1 doesn't cause hair loss!, and my sister's hair has already started coming back on the top of her head, which is amazing! She will have a visit with her doctor before first T-DM1 infusion, then blood labs before every treatment to make sure her platelet levels are high enough to proceed, which can be done the same day. 
In addition to T-DM1, my sister will start Tamoxifen daily. Tamoxifen is meant to reduce the risk of recurrence for the estrogen-receptor-positive part of my sister's breast cancer as it blocks estrogen from binding to estrogen receptors on cells in the body. Side effects can include hot flashes; a 1/100 risk of blood clots, which can be recognized through any signs of trouble breathing or swelling legs; and a 1/1000 risk of uterine cancer. Uterine cancer always presents itself with a symptom of abnormal uterine bleeding, which my sister and her doctors will watch out for.
Here are some questions we asked my sister's oncologist about all of this:
 
Q: "How will you know if the T-DM1 and Tamoxifen treatments are effective?"
A: "When there's some cancer left at time of surgery after administration of TCHP, there is a meaningful benefit in taking T-DM1 in reducing risk of recurrence. For most HER2+ breast cancer, recurrences are mostly within the first 5 years after treatment. For hormone receptor positive cancers, it can be later. When you're hormone positive and HER2+, it depends. That's the driver and why we're treating both--to try to prevent recurrence in 5 years."
Q: "So the surgery removed all the cancer, the lymph nodes were negative, and there were healthy margins--but how can we make sure no cancer traveled outside of her breast?"
A: "The purpose of T-DM1 is assuming there was existing cancer in the body resistant to the neoadjuvant chemotherapy. T-DM1 is used to make sure if there's something flowing around to get rid of all of it. T-DM1 targets HER2+; Tamoxifen targets estrogen."

Q: "What signs of recurrence should we look out for?"

My sister's oncologist said that she will be coming in for appointments on a regular basis so shouldn't worry too much about recognizing recurrence on her own, but that warning signs of recurrence include any new lumps, bumps, or skin changes across the chest wall; back or hip pains that don't go away; losing all sorts of weight without trying; or being worried you had a stroke with trouble speaking or swallowing.
Q: "What does family planning look like?"
"You will likely be on Tamoxifen for 5 years, and could take a pause to expand your family around 2 years," my sister's oncologist told them.

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Here's my twin sister at home enjoying some bright flowers and a card from friends!!! :)

Next steps

The best case long-term scenario that we are praying for is: That my sister gets through all of her T-DM1 treatments over the next 10 1/2 months with no side effects!; then she gets through her 5-year-daily dose of Tamoxifen with no side effects; and after that, that she is able to go through the rest of her very long and wonderful life with no more cancer, EVER!!!!! And that she and her husband would be able to expand their family along the way. :)

In the short-term, my twin sister plans to go back to Mayo Clinic in Rochester in 8 weeks to do a heart ultrasound, blood labs, an office visit, and her first infusion of T-DM1.

In the immediate future, my sister is healing from surgery, so she's doing a whole lot of nothing except watching movies and playing SimCity on her cell phone. Because of COVID19, my sister has had to (and will likely continue to!) have all of her surgical follow-up appointments on phone calls or video chats.

That means that today, my sister's husband (with the help of me, my baby sister, and mom) removed her right surgical drain AT HOME. (Her husband did most of the work and was a CHAMP!) She has some extra swelling on her left side because of the removal of two of her sentinel nodes on that side caused extra swelling, so the plastic surgeon said she could likely have her right drain removed Monday as the swelling decreases.

After her drains are removed, she's not going to be able to move very much but will stay put for another several weeks!

God is good!!!

We are praising the Lord for the removal of all of my sister's cancer at surgery and are asking for prayers for complete healing from her surgery with no complications. We are praying especially for protection from COVID19, and that my sister's "Phase 3" chemo regimen of T-DM1 and Tamoxifen would be completely 100% effective in keeping cancer away forever with no side effects!!!

I'll post again after my sister has her one-month post-op appointment heading into her first dose of Tamoxifen. Here's hoping (and praying) there is a treatment for COVID19 by that point and that the virus has started to subside worldwide so that we can get back on to "life as normal"--or as normal as it can be in the midst of beating and treating breast cancer!

In the meantime, we're remembering the Lord's faithfulness to us through this challenging time. Not only has God given us some of the most amazing doctors in the world, but we find incredible comfort in knowing God has already gone before my sister into and through all of her treatments and has come out on the other side. We proclaim and believe we are going to see a victory over cancer and coronavirus!!!

And Jesus is with us every step of the way!!!

This blog post is the 20th 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 1st post is about my first mammogram ever; the 2nd post is about my consultation at Mayo Clinic's Breast Clinic; the 3rd post is about my stereotactic core biopsy at Mayo Clinic's Breast Clinic; the 4th post is about my diagnosis with "Stage 0" DCIS breast cancer; the 5th 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 6th post is about my twin sister's invasive ductal carcinoma clinical stage 2A breast cancer diagnosis; the 7th post is about my breast MRI and two ultrasounds to investigate "suspicious" spots on my right breast and liver; the 8th post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic; the 9th post is about preparing for my twin sister's chemotherapy appointments, including details about her egg banking procedure in the city; the 10th post is a summary of my sister's ovarian hyperstimulation syndrome and visit to the emergency room; the 11th 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 Rochesterthe 12th post is about my twin sister's first chemotherapy infusion at Mayo Clinic; the 13th post is about foobs, photo shoots and nipple tattoos (my plastic / reconstructive surgery plan); the 14th post is a recap of my successful double mastectomy and immediate direct-to-implant reconstruction operation; the 15th post is about my surgical recovery and day full of follow-up appointments at Mayo Clinic in Rochester; the 16th post is about my one-month-post-surgical-follow-up appointment and preventative baseline ovarian cancer screenings at Mayo Clinic; the 17th 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; the 18th post is about the end of my twin sister's six neoadjuvant chemotherapy infusions (TCHP); and the 19th post was about my twin sister's double mastectomy and reconstructive surgery plan (amid the global outbreak of COVID-19). To keep tabs on new posts, sign up for the "A Daily Miracle" email list at this link.

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