This blog post is the eighteenth 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; and 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. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.

“For this reason I kneel before the Father, from whom every family in heaven and on earth derives its name. I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.” -Ephesians 3:14-21

My twin sister just finished her sixth session of neoadjuvant chemotherapy at Mayo Clinic in Rochester, Minnesota, and the doctors say her tumor is shrinking! One of the PAs she saw last Thursday said she couldn’t even find the tumor on physical exam which is GREAT news because my sister is scheduled to undergo a double mastectomy with reconstruction on Friday, March 20th at Mayo Clinic’s Rochester Methodist Hospital and it’s our (and the doctors’!) hope that she has a “complete pathological response” at the time of surgery, which means her cancer was completely responsive to the neoadjuvant chemotherapy treatment and there would be no signs of cancer left in her system when she has her double mastectomy!

Neoadjuvant chemotherapy and prayers for a complete pathological response at time of surgery

“Neoadjuvant chemotherapy” is chemotherapy for cancer that occurs before breast cancer surgery. Sometimes, breast cancer patients have breast cancer surgery like a mastectomy BEFORE going through any kind of chemotherapy or radiation treatment, but there are different types of breast cancer and having chemotherapy before surgery has been proven to be especially effective for HER2+ breast cancer patients in shrinking tumors and preventing the cancer from coming back! Because my twin sister’s cancer is HER2+, her oncologist and surgeons decided neoadjuvant chemo was the best choice for her. For more details about neoadjuvant chemotherapy’s effectiveness, you can watch this amazing presentation by a world-class Mayo Clinic breast cancer surgeon.

The good news is that her doctors haven’t been able to locate her lump on physical exam hardly at all anymore, which means her chemotherapy so far has been effective. We are praising the Lord for her healing and we are humbly asking for God to do “immeasurably more than all we ask or imagine, according to his power that is at work within us” in curing her COMPLETELY at the time of her surgery on Friday, March 20th!!! We trust her doctors and know God is making a way for us by providing us with, literally, some of the best doctors and treatments in the world.

What’s next after my sister’s surgery? 

There are two options for my sister from here, and both involve some more treatment after her surgery on March 20th.

Option #1 is: If she has a “complete pathological response” / “pathological complete response” at time of surgery and the surgeons and pathologists find no cancer at time of surgery (hooray!), she will likely need a little bit of targeted therapy after surgery–called Herceptin (also known as Trastuzumab). These treatments would occur through 11 infusions taking place once every 3 weeks for another ~9 months total.

Option #2 is: If there is some cancer left at time of surgery, she will likely need to go through a new chemotherapy regimen called T-DM1, which would also be 14 infusions 3 weeks apart, also for ~9 more months total. T-DM1 is a new chemotherapy regimen just approved for HER2+ breast cancer patients like my sister–it has excellent outcomes for HER2+ breast cancer patients in destroying the cancer and making sure it never comes back.

Either of these options–#1 or #2–will likely be complemented by the administration of Tamoxifen for 3-5 years, which is a pill that can be taken orally and ensures her cancer won’t ever come back (by blocking some of her body’s production of estrogen to keep the estrogen positive hormone receptors of her cancer from growing again).

These options are subject to change based upon my sister’s pathology report that will come back after her surgery, so stay tuned for final prognosis!

It is my sister’s prayer that she won’t need T-DM1 after her double mastectomy with reconstruction, which is our prayer too. Our prayer is specifically for a “complete pathological response” at the time of surgery, which means her tumor will be completely gone and there would be no sign of cancer in any of her lymph nodes. That would mean she only has to do some more Herceptin, which, because it is a targeted therapy, wouldn’t have nearly as many side effects as the drugs she’s experienced in these 6 rounds of neoadjuvant chemotherapy so far!

A complete pathological response also means that radiation won’t be necessary. We are also praying that radiation won’t be necessary after surgery!

But why does she need more chemotherapy after surgery?? Isn’t surgery the end??

The neoadjuvant chemo has been very effective so far, which is great. But, like my sister’s oncologist said at the beginning of all of this, he hopes for her to be cured at the end of this, and the cure will come from a year of treatments when all is said and done. All along we’ve known my sister would need ~12 months of treatment including surgery, but it’s important to celebrate the victories along the way, including:

1. As of Friday, the Cold Cap (which she’s wearing in the photo above) will be gone forever!!! My sister lost about ~45% of her hair during her neoadjuvant chemo, but the Paxman Cold Cap has helped her keep the ~65% AND wearing the Paxman Cold Cap will help her with faster hair regrowth. Taxotere is a drug that’s probably to blame for the hair loss, which we are saying goodbye to forever starting now (after surgery, it won’t be part of the picture). While the Cold Cap has been awesome in helping preserve some of her hair, it’s been very cold and it’s time to say goodbye! Bye Taxotere, Bye Cold Cap, hello hair regrowth!!!
2. No matter what treatment is coming after surgery, it won’t be as intense as what she had before surgery. As her oncologist said at her intake appointment at Mayo Clinic in October, they pulled out the “big guns” before surgery to take care of things so that, after surgery, treatment would be much simpler and less intense. Like I said, our prayer is for a complete pathological response!

It’s hard for my sister to know she has to face another 9 months of treatment after her operation coming up in a few weeks, and it’s hard for the friends and family who have been praying for her to know that she has to go through another 9 months of treatment, but it won’t be as intense as what she’s endured already no matter what and we are praising the Lord for His strength in sustaining her on the journey so far. Even more than that, God has provided her with effective treatment so far–the fact her tumor is shrinking (and may have completely disappeared!) is an incredible blessing! Not to mention, she was diagnosed with Influenza B last week and was able to heal in time to have her sixth neoadjuvant chemotherapy infusion yesterday. Hallelujah!!!

Influenza B and (another!) trip to the emergency room

I’ve been back and forth to Mayo Clinic in Rochester for several of my own appointments in the past couple of months and have been able to attend several of my twin sister’s appointments at Mayo Clinic, too. I don’t want to miss an appointment because, aside from having FOMO in the first place, as I look back on our journey so far, every time we go to Mayo for appointments and treatments, I feel like I’m in the front seat watching a miracle unfold. That is especially true of the healing my sister experienced this past week leading up to her final chemo infusion at Mayo Clinic: She was diagnosed with Influenza B a week ago Friday and kicked it in time for her chemo appointments at Mayo yesterday.

This is a miracle in and of itself–for a chemo patient to get sick in the first place is terrible. Second, to get sick a week before the last chemo infusion scheduled to happen before a major cancer surgery is bad news. Third, thanks to amazing doctors and prayers from family and friends, she got well enough to go ahead with her final chemo infusion before surgery without changing the timing of anything!

God is good!!!

Where did the flu come from??

So how did she come down with the flu? Typically, my sister has a chemotherapy infusion on a Friday, sleeps and rests a lot of the weekend, works from home for a few days following her infusion, and then gets back to work. She’s had a fairly significant amount of nausea and has spent some quality time in the bathroom since chemotherapy started, but the prescription Imodium and some other nausea meds her doctors prescribed her with have worked wonders for the most part, and has kept her going to work most days of the week following her infusions (at the very least, she works from home).

As a lawyer who loves going to court, she’s even been to court to argue some cases a few times this past couple of months! That’s why, the week after her fifth infusion, when she couldn’t leave the bathroom for almost 2 entire days, we were worried. Then she started having the chills a few days later along with a headache. When she spiked a fever of 102.5, we knew it was time to take her to the Emergency Room. This was stressful, especially because we knew she caught it from someone or somewhere probably from being out and about at work, at the gym, etc.–but all along we’ve encouraged her to stay active and go about life as normal as much as is possible–something her doctors have encouraged her to do, too. It just sucks that it’s during a time of year when everybody seems to be sick. She was almost done with her chemo treatments when she got sick, too, but as my sister said: “I guess my journey wouldn’t be complete without me getting sick during chemo.” It really does make the journey complete, I guess!

Watching my sister get tested for the flu with a flu swab was a horribly uncomfortable experience, but it wasn’t as bad as watching her panic over the strep throat test which was a fairly traumatizing experience for her. Luckily, her husband and I were able to make a joke out of it, which we think she appreciated later. 🙂 An hour later, we were relieved when her diagnosis came back as Influenza B because at least we knew what we were dealing with.

Given it was Valentine’s Day (and a Friday evening at 8pm) when we headed for the hospital, we got on the phone with the Mayo Clinic oncologist on call who agreed Tamiflu was a good treatment plan. When they ran her blood labs, the ER doctor found that she was super low in potassium–my sister’s potassium levels had plummeted to 2.8 and were supposed to be 3.5. So they got those numbers back up to where they needed to be, thankfully!!!, due to 8 pills of potassium along with two bags of liquid potassium administered through IV. She got home around 2am that night after many prayers and much supplication from family and friends. 🙂

Once again, God is good!!!!

Up next (on March 20th!): Double mastectomy with reconstruction!

My twin sister will have the same surgeons I had for my double mastectomy with reconstruction in December 2019, and she’s set to meet with them to sketch out her double mastectomy and reconstruction surgical plan on Friday, March 13th. She had her first appointment with her mastectomy surgeon last October as part of her multidisciplinary intake team meeting at Mayo Clinic, and is set to meet with her again as well as her plastic surgeon to discuss reconstruction options.

My baby sister, mom, and sister’s husband were able to attend meetings with her oncology team and a PA from her mastectomy team to figure out what we have to look forward to on March 13th, and found out that my sister’s surgical plan will look a bit different than mine because her cancer was invasive, as it’s a guarantee she has to have 2-4 sentinel lymph nodes removed and she gets to decide whether or not she’s going to keep her port in for her post-operative treatments or have it removed at the time of her double mastectomy.

For now, we are grateful for her healing and are praying for zero side effects (as much as is possible! :)) this coming week as she rests after her sixth and final neoadjuvant chemotherapy infusion before her double mastectomy on March 20th! We also get to look forward to her meetings with her surgical team on Friday, March 13th–I will be meeting with our plastic surgeon that day, too, as a three-month follow-up!–and we’ll have updates then about what exactly her surgery will look like. In the meantime, we’ll be praying Ephesians 3 together.

This blog post is the eighteenth 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; and 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. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.