This blog post is the 27th in a series about my (and twin sister's, and now, baby sister's) preventative breast cancer screening journey that began when we were 30 years old in July 2019. My baby sister began her preventative baseline breast cancer screening at age 25 at Mayo Clinic in Rochester in October 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. To order a tshirt raising awareness for breast cancer, fill out this form--shirts are $20 and $8 goes directly to support Mayo Clinic's Breast Clinic in Rochester, Minnesota!
Today, we introduce a new character to our breast cancer screening story: My baby sister, who is 26 years old. When my twin sister and I began our baseline breast cancer screening journey in July 2019 at age 30, she was only 24. One of the hardest parts of being diagnosed with breast cancer has been to watch my baby sister's anxiety rise as she realized that her future might look a lot like ours--and that she would need to start her breast cancer screening ASAP.
Never mind the statistics from the American Cancer Society and other credible organizations about how approximately 1 in 10 women get called back after mammograms, only 1 in 10 women under the age of 50 have microcalcifications on their baseline screenings at all, and even less than that get biopsies. All of these statistics seem to be to us now clear signs of God's protection and provision.
It's a miracle I was called back for more screening in August 2019 and I'm grateful to God that He allowed me to go through my breast cancer diagnosis because it quite possibly saved my twin sister's life, and allowed my baby sister to become aware of her high risk factors, as well. God loves us and is in control!
But that truth doesn't make our reality any easier to swallow. As my twin sister's boss said to her when she was diagnosed: "THERE IS NO JUSTICE IN THIS!!!" Or, as one of my nurses once said to me, "Cancer don't discriminate."
So, here we go again!, this time embarking on my baby sister's preventative breast cancer screening journey at the place we've come to know and love: None other than Mayo Clinic's Breast Clinic in Rochester, Minnesota.
October 2019: My baby sister's preventative baseline breast cancer screening begins
As soon as my twin sister and I were both diagnosed with breast cancer within three weeks of each other in October 2019, my baby sister knew it was time to start her screening, too. Even though she was only 25 years old, she made an appointment to see our primary breast clinic doctor. My baby sister of course wanted to see the same Mayo Clinic Breast Clinic doctor my twin sister and I were seeing because, as I've said before, she's the best doctor in the universe. :)
At my baby sister's intake appointment on October 30th, 2019, she found out that our doctor has seen patients as young as 18 who have been diagnosed with breast cancer, so it's not completely unheard of to see patients still in their teenage years dealing with a breast cancer diagnosis. Not that it makes being screened for breast cancer at the age of 25 any easier, but it's true.
Unfortunately, our doctor found a small nodule during my baby sister's physical exam that day. She ordered an ultrasound for the following week to investigate further. That's the photo above--my baby sister, taking a selfie in her gown in the ultrasound waiting room, waiting to see if she had breast cancer, too!
Unfortunately again, we found out that the ultrasound radiologist thought one area on my baby sister's left side looked "suspicious" and recommended a biopsy of the suspicious area. We were SHOOKETH.
Sharing breast clinic doctors and appointments
One "fun" thing about all of this nonsense is that we all got to start sharing breast clinic appointments at Mayo Clinic together. On November 1st, 2019, I had a meeting set with our primary breast clinic doctor to discuss my surgical plan. But before we discussed my business, our doctor turned to my baby sister first who was sitting in the corner.
"So, you just couldn't cooperate with us at your ultrasound, huh?" our doctor said, jokingly.
My baby sister laughed. "Nope!"
"Yeah, look what you started!" I said and pointed at our doctor.
"Actually, YOU started all of this!" our doctor said and pointed back at me.
We all laughed.
"I mean, really, I was the one who started all of this," our mom said.
I sometimes wonder what our consults sound like from the hallway of Mayo Clinic's Breast Clinic. Before COVID19 hit, we had an average of 5 attendees per appointment, and we probably laugh more than your average breast cancer consult crew does! It's a gift to be able to do that with our doctors. Being able to laugh in the midst of all of this is an amazing encouragement and blessing.
As one of my nurses said to me: "This all really sucks, but your outlook seems overwhelmingly positive."
And I plan to always have it be that way! Jesus wins in the end, after all.
Our doctor then checked in with my baby sister about next steps--she ordered her an MRI and ultrasound-guided biopsy in December 2019, set to take place the night before and day of my double mastectomy with reconstruction operation. We all prayed that my baby sister's "suspicious" area was absolutely nothing to worry about.
"We can only take so much!" my mom says. I agreed wholeheartedly.
My baby sister's first MRI and biopsy
Fast forward to December 2nd, 2019: My baby sister's MRI was scheduled for 6:30pm on the night before my double mastectomy with reconstruction operation. It worked out well because everyone could head down to Rochester together, get dinner, have my baby sister's MRI, then send me off into surgery.
The night of my baby sister's MRI, she was extremely anxious. My mom and myself were able to accompany her back into the prep area (pictured above), which helped ease her anxiety a bit! Getting the IV started was no problem, and getting "gowned up" was no problem.
It was kind of strange, though--on our way back to get her all checked in, three EMT's came through the MRI prep area with an empty stretcher. "EXCUSE US," they said, and we had to push ourselves up against the wall of the hallway to let the EMT's and stretcher pass. It seemed like an urgent situation and definitely didn't help ease my baby sister's anxiety in the slightest. "Is that stretcher for me?" she asked. We laughed nervously.
In the prep area, we reminded my baby sister she'd get plenty of warm blankets on her back from the technicians, she'd have earplugs to drown out the noise that I told her sounded like gnomes building a fortress (at least that's what it sounded like to me during my first MRI and MRI biopsy), and she could hopefully pretend she was on a beach.
We prayed together and reminded her the test would take 20 minutes or less and then it would be over. She smiled and left with the MRI technician to get her scan.
My mom and I returned to the waiting room where my husband and dad were waiting for us. We prayed and waited for what seemed like an eternity. Then, a nurse came out.
"Jane?" My mom stood up like a bottle rocket. I followed her over to the nurse.
"She wasn't able to complete the scan," the nurse said.
"Where is she??" my mom asked.
"She's in a dressing room, asking for you," the nurse said. "She's pretty upset."
So we knew she hadn't been able to complete her first attempt at a preventative baseline breast cancer screening MRI.
I followed my mom into the dressing room, where my baby sister was recovering from a full-on anxiety attack.
"I'm so sorry!" she said through racking sobs and tears. "I couldn't do it!!"
We reassured her that everything would be fine and that we'd figure it all out later. I asked the nurse what happened.
"She got into the tube but started shaking so much we couldn't get good enough quality images," the nurse said. "We can sometimes provide a sedative for patients with anxiety. We can also sometimes knock patients out cold, but that's less common."
My baby sister cried for a bit longer, and we helped her get dressed so we could head to dinner.
Ultimately, my baby sister wasn't able to complete her first MRI due to an anxiety attack inside of the MRI tube. While I don't personally suffer from anxiety attacks, I can imagine how crippling it must feel. My heart broke for my sister that night, watching her cry and knowing she felt like she let everyone around her--and herself--down.
My mom and I reassured her it wasn't her fault and that everything would be fine, and that we'd figure it all out with the help of our breast clinic doctor. Ultimately, next steps would be to take a sedative before her next MRI, which would ease her anxiety and make the test possible. That would happen in 6 months. In the meantime, my baby sister had to face an ultrasound-guided biopsy the next morning--while I was in my double mastectomy with reconstruction operation.
My baby sister's ultrasound-guided biopsy
My baby sister got an ultrasound-guided biopsy the next day: on December 3rd, 2019. She was able to complete it (she's smiling with me in the photo above right after her biopsy was complete!), and results came back benign--which was an incredible blessing. At her appointment with our breast clinic doctor to discuss results, it was decided she'd have another go at an MRI in 6 months to try again for a full preventative screening because MRIs are the "gold standard" of breast cancer screening, especially for a 25 year old!
As one example of how God's timing is perfect, it turns out that my baby sister made an appointment for her second MRI attempt on the same day as my twin sister's third infusion of T-DM1 in July 2020. So, even though there are visitor restrictions due to COVID19 precautions at Mayo Clinic in Rochester, God made it possible for me, my twin sister, her husband, AND my baby sister's husband to all be at Mayo Clinic at the same day, at the same time!! My twin sister and her husband ran over from my twin sister's chemotherapy infusion as soon as it ended and were able to hug and send off my baby sister right before her MRI at 5:30pm. (This is amazing in and of itself: That my twin sister felt well enough after a chemotherapy infusion to run across Mayo's Rochester campus to say hi to and hug my baby sister before sending her off to her MRI :)).
So here we all are, taking a selfie in the MRI waiting room before sending my baby sister back for her scan!:
My baby sister's second MRI attempt: SUCCESS!!!
Anxiety is not all that uncommon for individuals going through MRI exams. I experienced a bit of it during my MRI biopsy that lasted almost four hours, after all! So, luckily, my baby sister was all set to attempt another MRI: This time, with the help of a sedative (Ativan) and a guardian angel in the form of an MRI technician named Stephanie (just like my twin sister!!!) who stayed in the room with her and held her hand during the MRI!
I got to ride along down to Rochester to accompany my baby sister to her MRI along with her husband. She invited her husband as driver, and me for comic relief. :) So off we went, ready to conquer the scan together inside of Mayo's Charlton Building: Six months after my surgery, in the middle of my twin sister's chemotherapy regimen, and all in the middle of a global pandemic!
Here is how my baby sister's second MRI attempt went:
First of all: She got called back for her scan at 5pm. Her husband was able to go with her to the prep area which helped ease her anxiety immensely. They gave her .5mg of Ativan at 520pm, started her IV, and called her back for her MRI at 615pm. That gave her about an hour for the Ativan to kick in, which she was thankful for. They actually offered her 1mg of Ativan which is what the doctor had prescribed her with, but she only took half the dose. She said that, for next time, she'll be taking the full dose offered to her. :)
When she was called back for her scan at 6:15pm, she was feeling somewhat relaxed, but on edge overall.
Her husband came back into the lobby area where we were waiting for updates and he told us that she was nervous but that the people in the back were super sympathetic and understanding and were really nice to her and were helping her out.
While we waited, we played Pokémon Go on our phones and reminisced about our journey so far. We prayed and wondered if our baby sister was going to make it through her exam. This was her second attempt, and we weren’t sure how it was going to go—so we asked for lots of prayers from everyone we knew and then a miracle happened: SHE DID IT!!!
How to overcome anxiety in an MRI exam
It turns out that, as soon as my baby sister went back to her exam room and the technician asked her if she was ready to get on the table to go into the MRI machine, my baby sister started bawling.
"Both of my sisters have had breast cancer, I'm scared to do this and don't know if I can," she babbled to the technician.
"It's okay!" the technician said. "I'm so sorry to hear that. How are your sisters doing now?"
"Well, one of my sisters just had a chemotherapy infusion today," my sister responded. "The other one had surgery in December!"
"I'm so sorry," the technician said. "That's so hard!"
"I really don't think I can do this," my sister said.
The angel of a technician then told her: "Would it be helpful if I stayed in here during the exam and held your hand?"
My baby sister looked at her in disbelief and said, "Is that safe??"
"Yes! We usually don't have enough people to do this but today we do," the angel of a technician responded.
And the technician decided she would stay with my baby sister and hold her hand through the entire scan. They even gave her a "Quease Ease," which is designed to help with nausea.
I had no idea this was legal, or allowed, or okay--it was my understanding if anyone or anything stayed in an MRI room during the test they would explode. Apparently, I was wrong--OR it was actually a guardian angel in there with her! What's amazing and incredible in addition to this technician's generosity is that her name was Stephanie. That's my twin sister's name, too. :) God is so good!
Technician Stephanie stayed with my baby sister for the entire scan, encouraged her the whole time, and when it was all over, my baby sister thanked her profusely.
After a half hour had passed, the doors to the MRI area opened and a technician called “Eric?” And off my baby sister’s husband went!
“She just got done and was asking for you,” the technician. Said as she ushered him back to the prep area.
My twin sister, who had just completed her third infusion of TDM1, jumped out of her chair in the waiting room and clicked her heels and started dancing around!!! We weren’t quite sure if our baby sister had actually completed her scan at that point for sure but shortly after my twin sister jumped up and down and clicked her heels our baby sister came out of the MRI area and said this:
So, my baby sister's second attempt at an MRI was successful and we are SO grateful!!! The moral of the story is: 1) God is good 2) Jesus sends help in times of trouble and anxiety, sometimes in the form of sedatives and guardian angel MRI technicians 3) It’s okay to be scared and to ask for help!
My baby sister's MRI showed some areas of concern on both sides of her chest, but "nothing scary," according to our breast clinic physician. She had to go in for some advanced ultrasound screening on the morning before her follow-up with the physician, and thankfully, there was no need for a biopsy. Instead, there were two areas presumed to be "fibroadenomas." Her breast clinic physician will follow up on those two fibroadenomas at her next follow-up appointment in 6 months. According to her breast clinic doctor, these findings are "normal" for a 25-year-old. (It's still kind of crazy she had to start getting screened at age 25 but here we are!)
So, this is what our baby sister's high-risk, BRCA-negative, 25-year-old (and now 26 year old!) breast cancer screening journey looks like:
- MRI screenings and/or clinical exams every 6 months
- Advanced screenings (ultrasounds) and biopsies (fine-needle, stereotactic, or MRI biopsies) as needed
- Lots of prayers and surrendering control of the journey to the Lord!
BRCA negative (?!?!!?)
One surprise for all of us was discovering that both my twin sister and me are BRCA negative--which was a shock to our genetic counselor, doctor, and ourselves!--especially given ovarian and breast cancer run in our family history. Because my twin sister and I are both BRCA negative, our baby sister is, too. That means our doctors can't base our treatment or care on the fact we're BRCA positive: Instead, her risk factors are more or less a question mark without any genetic mutations that they can point to. This means we all just go into a "high risk" category for ovarian and breast cancer all together given our family history. We are thinking about continuing genetic testing for the rest of our lives to see if the doctors and research scientists can find the gene mutation that caused both my twin sister and me (and my mom, at age 40!) to get breast cancer so early. We'll see!
Thank you all so much again now for your prayers for my baby sister. We are so proud of her overcoming her anxiety and accomplishing her first MRI scan and embarking on this journey toward preventative health. We also trust that God has a perfect plan and maybe, just maybe!, she won't EVER have to deal with breast cancer in her entire life--because my mom, twin sister, and I took the bullet for her. :)
Until next time, Mayo Clinic Rochester--thanks for saving our lives!!! We love you!!!
This blog post is the 27th in a series about my (and my twin sister's, and now baby 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 Rochester; the 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); the 19th post was about my twin sister's double mastectomy and reconstructive surgery plan (amid the global outbreak of COVID19); the 20th post was about my twin sister's double mastectomy with immediate reconstruction; the 21st post was about my twin sister's surgical recovery; the 22nd post was about my twin sister's first infusion of T-DM1 at Mayo Clinic; the 23rd post was about my six-month survivorship clinic visit; the 24th post was about my twin sister's second infusion of T-DM1 at Mayo Clinic; the 25th post was about my twin sister's third infusion of T-DM1 and her three-month plastic surgery follow-up appointment at Mayo Rochester; and the 26th post summarizes my twin sister's fourth infusion of T-DM1 and microcystic edema. To keep tabs on new posts, sign up for the "A Daily Miracle" email list at this link.