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My Breast Cancer Journey Part 34: My One Year Survivorship Appointment & My Twin Sister’s 11th T-DM1 Infusion!

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My Breast Cancer Journey Part 34: My One Year Survivorship Appointment & My Twin Sister's 11th T-DM1 Infusion!
Here my twin sister and I are with our husbands, halfway through our appointments for the day at Mayo Clinic in Rochester last Friday! We had side-by-side appointments with our plastic surgeon and then I went to my one-year survivorship meeting at the breast clinic while my twin sister went to her 11th chemotherapy infusion of TDM1!

This blog post is the 34th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.

My twin sister and I traveled down to Mayo Clinic in Rochester with our husbands last Friday and it was a blast! I mean, as much of a blast as breast cancer treatment and follow-up can be 🙂 I had my one-year Survivorship Consult at Mayo Clinic’s Breast Clinic in Rochester, Minnesotaand my twin sister had her 11th infusion of T-DM1/Kadcyla.

In addition to my one-year Survivorship Consult at Mayo’s Breast Clinic and my twin sister’s chemo infusion, we had side-by-side appointments with our plastic surgeon: My one-year survivorship consult after my double mastectomy with direct-to-implant reconstruction in December 2019, and my twin sister’s 6-month follow-up after her double mastectomy with direct-to-implant reconstruction in March 2020. We are both “looking good!”

Here are a few highlights (including buying some of the best gluten free donuts in the world from Drift Dough in Rochester, MN), praises, and new prayer requests for us at this moment in time (full details follow in the blog post below)–thank you so much again for your prayers for us as we travel this journey together!:

  • Praise!: My one-year survivorship consult with my primary physician at Mayo Clinic’s Breast Clinic in Rochester, Minnesota was excellent! I’m one year cancer free with no signs of recurrence!!! 🙂
  • Praise and prayer request!: My twin sister is 78.6% of the way done with her post-operative chemotherapy regimen of T-DM1/KadcylaHer side effects have been minimal, especially compared to what she experienced after her neoadjuvant chemotherapy in 2019 and early 2020. She has headaches and a bit of nausea for about a week after each of her infusions of TDM1, along with corneal cysts that have mysteriously developed and get a bit worse for the week after each infusion. But we’re hoping her microcystic edema will go away after her TDM1 treatment is complete. She can still see, which is a huge praise, and she only has 3 infusions of chemotherapy left! We hope and pray this is the last time she ever has to do chemotherapy EVER!!! 😀 Prayer requests for her would be that her side effects continually improve and are manageable after each of her 3 remaining chemo infusions and that her corneal cysts would miraculously disappear even now!
  • Praise and prayer request!: My twin sister and I are both “looking good” following appointments with our plastic surgeon, but I have to go back in 3 months instead of 6 months to make sure I’m not developing a “capsular contracture!” Since October 10th, I’ve been experiencing some pain on both sides of my chest, and discovered that could be the result of two things: 1) Nerve regeneration, which is normal for double mastectomy / breast reconstruction patients or 2) The beginning of a “capsular contracture,” which is defined by Mayo asScar tissue that distorts the shape of the breast implant.” So, praises are that both my sister and I “look good” and the pain I’ve been experiencing is not a cancer recurrence; and the prayer request is that I’m not developing a capsular contracture!! I’ll have another update on that after my next follow-up appointment on Friday, March 12th.
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Every time we visit Rochester, MN, we try to pick up a batch or two of the best gluten free donuts I’ve ever had. This time we pre-ordered two dozen and delivered a bunch to our care teams and chemotherapy nurses!

Spreading Christmas cheer with Drift Dough and homemade toffee

Before we left for our day full of appointments at Mayo Clinic together, we made sure that we brought some holiday cheer with us. We put together “care packages” for our doctors and care teams including homemade toffee (made by our mom and baby sister, who plan to go into business with it soon–stay tuned!!) for all of our doctors. We also gave each of our doctors Christmas cards from our entire family and stopped into Drift Dough, the donut shop with the best gluten free donuts in the world!, to make sure we had donuts for the Mayo Clinic Breast Clinic team and the chemotherapy floor nurses on Gonda 10.

You can preorder donuts from Drift Dough. We highly recommend. 🙂

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Here I am all checked in and ready for my plastic surgery follow-up appointment with my husband in the Mayo 12 lobby, donuts in hand!

Plastic surgeon updates!

I was excited to see my plastic surgeon because I have been experiencing some mild pain across my chest since October 10th and wanted to know what that was all about. The way I explained it to my plastic surgeon is that I don’t have any lumps or bumps anywhere, but I do have dull aches and shooting, stinging pains that started on October 10th. These pains alternate between occurring at the surface / skin level to middle-level depth on both right and left sides of my chest from my armpits across to the center of my chest / sternum. The pain is on and off every few days.

So I asked her: Is this something to be concerned about, or just my nerves waking back up?

She said it’s more than likely nerve regeneration–the operation was traumatic to my chest after all as a bunch of my nerves got wrecked and my incisions made me look like Leonardo DiCaprio after he got mauled like the grizzly bear in The Revenant–but that it could be the beginning of a “capsular contracture” and she wanted to see me in three months to check up on that.

Also, she and her resident both said that, to help with the pain if it’s a result of nerve regeneration, you can massage your chest wall by your armpits which is something that helps catalyze nerve regeneration.

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Here are me and my husband waiting to see my plastic surgery doctor at Mayo Clinic right next door to where my sister was meeting with her first!

I also told her that I’ve been experiencing some fatigue that comes and goes along with some brain fog, but that it’s better than it was earlier this year. I asked her if she knew what exactly is going on and she said that she’s not entirely sure but there is some academic literature that says general anesthesia can change your EEG brain waves but that is mostly a short term effect that should be better after a year.

“I’m looking for an excuse for why I’m tired and feel like my brain is moving slowly all the time and you’re not giving me anything!” I joked.

“You don’t seem like a complainer to me!” she said. “Besides those studies, I’m not really sure what to tell you about the fatigue. Usually with patients who just have surgery a year out, they’re fine. Also, there’s a lot that’s gone on this year with you: First, your surgery; then your sister’s surgery, and you’re worried about her treatments…”

“Who says I’m worried?!!” I interrupted.

“Ha, ha. I’m sure you’re worried.” she smiled.

“Yes, I’ve been worried.” I said.

“So there’s that, then there’s COVID,” she said. “This year has been terrible. There’s a lot going on.” 

That was all very true and so I took her advice to heart. My fatigue is very likely due to environmental and emotional factors. So I decided I’m going to be more kind to myself and take plenty of time to rest in the healing process. That’s a reminder and a reality that’s been very hard for me to handle.

Our plastic surgeon also loved her toffee!!:

“You’re so sweet! I will be sure to share with everyone!,” she said.

“You don’t have to share if you don’t want to!,” I said.

She turned to her resident and nurse and said:

“Did you hear that, guys? I’m not sharing!”

She closed the appointment by saying: “I was going to graduate you today, but due to the pain you’re describing and have been experiencing, I want you to come back in 3 months to make sure you aren’t developing the beginning of a capsular contracture. If you are, it will feel tight, and there will be pain, so keep an eye out for any tightness or hardening of the implant and I’ll see you in 3 months!”

steph-paul-mayo-plastic-surgery-exam-room

Here is my twin sister and her husband at her 6-month plastic surgery follow-up!

My twin sister’s plastic surgeon updates

My twin sister had her plastic surgery update next door to me and she had a great appointment, too! There was a small bump protruding from her implant on her left side and she found out that was because sometimes the implant protrudes out following the surgery from underneath the alloderm, also known as the repurposed cadaver skin that holds our implants in place.

It’s not painful for her, so that’s good, and the only times you can see it is when she raises her arms above her head, which isn’t a huge deal! She’ll just plan to go back with me again on Friday March 12th for her one-year post-operative appointment! She will also go back (like me :)) in 5 years for a checkin to see if it’s time to get new implants!

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Here is my twin sister and her husband all checked in for her 6-month plastic surgery follow up appointment on Mayo 12 in Rochester!

My one-year survivorship appointment at Mayo Clinic’s Breast Clinic in Rochester, Minnesota

I was beyond excited to see my primary care doctor at the Breast Clinic, mostly because she was the one I was matched up with when this journey all started in August 2019 and she’s been AMAZING in “quarterbacking” my care team in addition to providing us with excellent care and answers to all of our questions along the way. She took on both of my sisters as patients in the months following my initial visit, too, so it’s become a family affair!

It had been a year since I’d last seen her, so we caught up about what all has unfolded in 2020 so far and she made sure to do a thorough physical examination. We talked about the pains I’ve been experiencing across my chest, and she agreed that it’s probably nerve regeneration. She also agreed it was a good idea to come back and see my plastic surgeon again in three months to address / evaluate any risk of “capsular contracture” that I’d also discussed with my plastic surgeon.

In the meantime, she said she was not able to find any signs of capsular contracture on my physical exam, which is great!

The best line of my entire post-visit note file was definitely this: “Certainly no indication of local or distant recurrence of her disease.”

Woo!!! I’ve made it to one year cancer free!! This is SUCH a relief especially considering recurrence of breast cancer especially in young women tends to happen within the first five years. Take that, breast cancer!!!

Because it had been a year since I’d seen her, I had a list of questions. Here they are: 

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Here my twin sister and I are all checked in for my one-year survivorship meeting with my primary breast clinic doctor and my twin sister for her chemotherapy appointments upstairs!

Q: My first question is about recurrence: Given I was only 30 when I was diagnosed with DCIS, what are the chances it will come back eventually? What are my risk factors and how can I minimize my chances of it never coming back in my entire life?

A: We have your recurrence rate the lowest we can get it with a bilateral mastectomy. Also, stay active. And sleep is important. 

Q: Do prenatal vitamins and Cenitol / inositol–which is a supplement that helps with ovulation–impact my estrogen levels, and if so, do these increase my chance of breast cancer at all? 

A: I do not have concerns over prenatal vitamins or supplements for you. Pregnancy itself does cause a higher estrogen state, so your risk of recurrence is slightly higher that time. But we’ll keep a close eye on you. 

Q: The gynecological oncologist we met with last month suggested my twin sister and I both get our ovaries out at age 39 and Fallopian tubes maybe even before that. What do you think?

A: So, there are three different stages of early onset menopause: Before age 40, ages 40-44, and 45+. If you can make it to age 40, and then keep a close eye on things through ultrasounds and CA-125 levels until your mid-40s, that’s best case scenario. Otherwise you start to see, with your ovaries removed before age 40, an increased risk of early onset dementia, osteoporosis, and cardiovascular problems. BRCA1 patients are often recommended to get their ovaries removed between the ages of 30 and 35, which is super early, but is doable because usually we can give you hormones / estrogen to offset the effects of that early ovary removal. But because of your early breast cancer being estrogen positive, I would hesitate to give you estrogen of any kind. So those are things to consider.

More genetic testing???

One other thing my doctor suggested is that, genetically, me, my mom, and twin sister could get our entire genome sequenced to see where there are tweaks anywhere to signify why we got breast cancer so early.

“Who knows, maybe they’ll even find a new high risk breast cancer gene!,” my doctor said.

“Then we can name it after ourselves! Or, after you! Because you’ve been quarterbacking this whole thing!” I said.

“I’m not sure about that,” she laughed.

It was so awesome to see her, because I’m still convinced she’s the best doctor in the universe. 🙂 I’ll go back to see her in June 2021 for my 18 month Survivorship Consult!

steph-tdm1-infusion-11-mayo-chemo

While I was at my one-year survivorship appointment / clinical exam with my primary breast clinic doctor, my twin sister was up on Gonda 10 getting her 11th infusion of T-DM1 / Kadcyla!

My twin sister’s 11th infusion of T-DM1 / Kadcyla!

My twin sister knocked out her 11th infusion of T-DM1/Kadcyla like the champion that she is!!! She brought Drift Dough for all of her chemotherapy nurses and they were SO excited because it turns out most of the chemo nurses and techs are gluten free!!

Her favorite chemo nurse was working and said to my sister and her husband, “Hey, it’s two of my favorite people!!!” They had a great conversation about how everyone is attempting to keep their heads above water during COVID-19 and how everyone is looking for silver linings.

It makes me smile to know everyone there makes her smile. I’m SO thankful she and her husband have been able to continue her chemotherapy regimens at Mayo Clinic in Rochester, Minnesota!!!

I’m also thankful her side effects after T-DM1 / Kadcyla have been minimal compared to her infusions of TCHP last year and into early 2020. She has some nausea and fatigue and headaches the week following the infusions of T-DM1 but all in all is doing excellently. We continue to praise God as our great Physician and Healer!

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Trusting God in the midst of trials

Last weekend at church our pastor preached a sermon about God’s love for us. Given it’s Christmas this week, it’s fitting that he would do that, but the main point of the sermon was that, while we were helpless, God sent His Son to save us (1 John 4). Our pastor’s emphasis on the word helpless hadn’t stuck with me before, but last weekend, it did. It came on the heels of a devotional from YouVersion I heard this week that focused on Philippians 4. That devotional reminded me that God is with us within trials, not just in spite of them:

“Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Paul wrote the letter of Philippians in chains in jail, and he was able to tell us to rejoice anyway. As I’ve written before, going through breast cancer has rendered me more helpless than I’ve ever been in my life. I’ve never experienced anything like being told I had breast cancer and that surgery would be necessary to save my life. Or hearing that my twin sister had breast cancer, too, and that she’d need chemotherapy AND surgery to save her life. Not to mention how terrifying it is to go into a surgery trusting a room full of doctors, surgeons, and technicians with my life and trusting and believing I’d wake up cancer free.

I’d be lying if I said it wasn’t difficult to trust that I’ll remain cancer free for the rest of my life–and that, if the cancer does come back, that I’ll trust God anyway. That’s a challenge I’m seeking the Lord’s strength to overcome: That the Lord would provide me with His joy and strength that would cast out any doubt and unbelief no matter what circumstances I might face in years to come!!!

Just like the verse from Isaiah 12:2 I put in above–which was the daily YouVersion devotional the day we went to Mayo Clinic last week–we don’t need to be afraid! Anytime I start to doubt God’s faithfulness I simply remember all that He’s delivered me and my twin sister and my baby sister from over the past 18 months :)) That’s been a good place to start :))

mayo-brothers-statue

We went to Mayo one week before Christmas Day so it only makes sense we’d put a Santa hat on the Mayo Brothers for our photograph with them outside the Gonda Building!! We are so grateful for our loving and supporting husbands who drive us to our appointments and stay with us through our appointments with all of our doctors!!!

Next steps

I’m SO grateful for the “great cloud of witnesses” that has surrounded us on our breast cancer journey so far. So many people have come alongside us to encourage us, support us, and are praying for us daily! I’m also grateful for God’s faithfulness throughout this entire journey. His strength has truly become our song, and his joy is our strength within that.

Silver linings of our journey so far include that my twin sister and I both have been able to identify more with Christ’s sufferings more than we’ve ever been able to in our lives. The Bible study we just went through with a group of women at our church in the Book of James was especially encouraging as we were reminded that we are commanded to consider it “pure joy” whenever we face trials of many kinds, including breast cancer–because we know that “the testing of our faith produces perseverance” (James 1:2-4).

Here are some things coming up on the docket that we’d love prayer for and are looking forward to in 2021!:

  • Friday, January 8thMy twin sister’s 12th infusion of T-DM1 at Mayo Clinic Rochester
  • Wednesday, January 13th: My baby sister’s second MRI as part of her baseline preventative breast cancer screening
  • Friday, January 29thMy twin sister’s 13th infusion of T-DM1 at Mayo Clinic Rochester
  • Friday, February 19th: MY TWIN SISTER’S LAST INFUSION OF T-DM1 at Mayo Clinic Rochester!!!!!!! YAY!!!!!!!!!!
  • Monday, March 8th: Dermatology appointment to remove and test a “mildly atypical” spot on her back (the dermatologist doesn’t think it’s cancer but just wants to make sure!)
  • Friday, March 12th: My follow-up with my plastic surgeon to ensure that I’m continuing to heal properly and there are no signs of capsular contracture; my twin sister’s one-year follow-up with her plastic surgeon!

Thank you so much for your continued prayers for our health and healing, and for my baby sister’s preventative breast cancer screening journey!!

God is good!!!

This blog post is the 34th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.

http://www.chicagonow.com/daily-miracle/2020/12/my-breast-cancer-journey-part-34-my-one-year-survivorship-appointment-my-twin-sisters-11th-t-dm1-infusion/

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