This blog post is the seventh in a series about my (and now, my twin sister's) preventative breast cancer screening journey that began 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; and the sixth post is about my twin sister's invasive ductal carcinoma clinical stage 2A breast cancer diagnosis. To keep tabs on new posts, sign up for the "A Daily Miracle" email list at this link.
So, I have Stage 0 DCIS in my left breast. My twin sister's diagnosis is Stage 2A Clinical "invasive breast cancer," or DCIS that became invasive into the breast tissue on her left side. Her diagnosis is worse than mine because, as far as my doctors and I know, my DCIS hasn't left the milk duct on my left side yet and can be taken care of with a double mastectomy while my sister's DCIS has expanded outside the milk duct and created three lumps in her left breast which will require 12 months of chemotherapy + a major surgery. She had amazing meetings with oncologists, surgeons, doctors and nurses at Mayo Clinic's Breast Clinic yesterday, and has a plan to start chemo in 3 weeks (she and her husband are still making the final decision of where they're going to do the chemo regimen: closer to their home in the city or in Rochester, Minnesota).
This week, I'm on a similar journey as my twin sister was last week: Her doctors thought her cancer might have left her chest and gone into her lymph nodes, but a biopsy showed her cancer HAD NOT SPREAD TO HER LYMPH NODES (or to her left wrist that had been hurting her). AMEN HALLELUJAH! (Her full journey at this link.) And now it’s my turn to have some fun. I thought I was all set with my Stage 0 diagnosis, but it turns out that, given my sister's invasive stage 2A diagnosis, my doctor wanted to order me a breast MRI ("We want to make sure you don't have anything invasive going on."). So after meeting with my doctor at 8am Monday morning, I went in for an MRI at 5:30pm that same day. My dad hung around with me for that appointment. We took a selfie with Charles and William Mayo before we headed back home (below).
What a breast MRI is like
I had a breast MRI at 5:30pm Monday. It was interesting. First of all, I didn't know what to expect, really--my sister told me about hers, and I had one for some severe sciatic nerve pain I was experiencing in 2015, but this was a different situation. I got checked in, had an IV inserted to my arm, and talked to my nurse about how I’m getting a Ph.D. in journalism, focused on the topic of human trafficking. “It’s crazy how much trafficking happens! People are just getting snatched up all the time!,” he said. Which made me laugh out loud in spite of myself: trafficking is a bit more complicated than people getting "snatched up," but I wasn’t about to get into an involved discussion about Immanuel Wallerstein’s world systems theory while he was injecting a needle into my arm. He escorted me to a changing room where I changed into a gown and comfy, warm socks (free Mayo swag!).
I sat in a waiting room, read some materials and signage about how dangerous it is to bring metal into the MRI machine room, used the restroom because a sign on the wall told me it would be a good idea, and got called back after about 10 minutes. I told my MRI tech I’d had an MRI before but that I had a little sister who was terrified of them and wanted to know how she dealt with patients who had claustrophobia in MRI situations.
“Oh, we’ve walked people in here blindfolded, no problem! Then you lie facedown and you never know what you’re going into. We sedate patients sometimes too,” she said.
She walked me over to the table, where she instructed me to lie facedown, with my feet toward the machine, arms extended above my head. It was a lot like a chiropractic table, I said.
“Right! Imagine you are tanning yourself at the beach. And I’ll give you a warm towel--see! It’s just like being at the beach!,” she said.
I thought that was hilarious. It kind of felt like I was at the beach.
The tech put the contrast IV into my arm and I was good to go.
“I’ll give you some earplugs, too, so it will drown out some of the noise,” she said as she pushed some earplugs into my ears.
The table started moving upward as the tech moved me into place, and backed me into the machine.
“Okay, we’re all set now! This should only last 20 minutes or so. I’ll keep you updated on the timing of each test!”
I heard a door shut, I laid there staring at the bottom of the table with earplugs in my ears, and the MRI machine whirred to life. For those who haven’t ever been in an MRI, it’s kind of like listening to an army of gnomes building a village or going to war around you with tiny hammers. There were a series of 4-5 tests that lasted 3-4 minutes each. I kept wanting to doze off and take a nap--I was basically tanning at the beach, after all--but I didn’t want to miss a cue that the next test was starting or fall off the table so I made sure to keep my eyes open.
“This is the last test, and I’m going to start the contrast. You’ll feel it go into your arm!”
I’ve heard bad things about Gadolinium-based contrast--and that Iodine-based contrast is better for you--but I asked the techs about that and Iodine-based contrast is only used in CT scans and the only adverse reactions to Gadolinium they’ve heard of in patients has been immediate. So I felt the contrast going into my arm and accepted the fact that, while it might be lowering my IQ a few points in the process of making me radioactive, it was potentially saving my life, so, c'est la vie!
The test ended, they pulled me out of the tube, took away my warm towel, and I somehow got to talking about my MRI tech about how she and her husband own a classic 1966 Chevy Camaro: red, with pop-up headlights.
“We drove it up and down the roads by the river this weekend. It was gorgeous with the changing fall colors,” she said.
Mayo Clinic nurses and techs and doctors are the coolest.
At 10am Tuesday morning, I got a call on my way in to work, going 65mph, merging onto the highway about to enter a tunnel. My phone rang with area code "507"--one I've memorized and learned to pick up no matter what because that's the Rochester, Minnesota area code and usually means it's a doctor with news about my cancer. This time, I picked up the phone on speaker as I was driving and it was a voice I didn't recognize.
"Hi, I'm from the radiology scheduling office at Mayo Clinic, calling because you had some imaging done here yesterday," the voice said.
"Yes, I did."
"Can you confirm your date of birth?"
Sirens started blaring behind me as two cop cars flew past me. I drove onto the shoulder to get out of their way, merged back into the lane I came from, and told the scheduler my date of birth as I entered the tunnel behind the cops.
"The radiologist who reviewed your images would like some more images to follow up on your MRI. Is there a day you are available to come back in?"
I word vomited all about my twin sister's diagnosis and how I would be at Mayo this Thursday for a day full of her appointments so it would be great if I could get in on Thursday.
"How about Thursday at 1:30pm?,” she asked.
"Sure, that works great. Do you know what was suspicious or why I'm getting called back in?" I asked.
"No, I don't have the notes from the doctor, I just know they've ordered more imaging."
"Can you tell me what kind of test it is?" I asked.
"An ultrasound,” she said.
Okay, so whatever was suspicious was happening on both sides. I thought it was kind of weird that I didn't have a call from the radiologist who interpreted the MRI or my doctor with details about the results, but I wasn't too worried. Waiting was still the worst, but I went on with my day.
Talking with my doctor
I met with my Ph.D. adviser for a lunch meeting that afternoon, and when I checked my phone around 1pm, I had a voicemail from my primary Breast Clinic doctor.
"Hi, I'm calling with the results from your M-R-I. Give me a call when you can. Talk to you soon."
Uh oh. I felt like if it were good news she would have left a longer message. Bad news is better delivered in real time. So I told my adviser I had to call my doctor and that I would be right back. My doctor wasn't in her office, so the nurse desk said she'd call me back in 5 minutes. When she did, she said:
"I took a look at your MRI and didn't get the results I wanted. You have two spots on your right side that look at little bit like DCIS or could be something invasive. We'd like to take a closer look with an ultrasound. The only real way to find out what it is is with a biopsy, so we might need to do a biopsy on the right side--on whichever of the two spots looks most suspicious."
I said, "No way! I might have something on my right side? I'm glad you ordered an MRI yesterday!"
"Me too," she said. "And there's more. We also see some lymph nodes enflamed on your left and right sides. The left side is likely because you had a biopsy a few weeks ago. That would be a natural reaction for the lymph to enflame like that. But we don't know what's going on on the right. So we may need to do a lymph node biopsy as well."
"This just keeps getting more exciting!" I said.
"Right. I have one more thing to tell you..."
"...or we could just be done talking right now," I said. (Haha.)
"But actually, I really need to tell you this," she said. "There is a 98 percent chance this is nothing, but there is a spot on your liver that picked up some contrast in the MRI."
“My LIVER??” I said.
“Yes.” she said. "We need to take a closer look at that."
"So are you telling me that my cancer could be invasive, be in my lymph nodes, and have metastasized to my liver?" I asked.
"Well, we are getting a bit ahead of ourselves--like I said, I think it's a 98 percent chance it's nothing. But the best way to tell is with an ultrasound."
"Geez!" I said.
"Don't panic!" she said. "You don't need to panic about this. I just want to make sure we get all of the information we need before sending you into surgery. I will try to schedule an ultrasound for your liver on Thursday so it's the same day as your breast ultrasound. And we might need an MRI biopsy, but that would be a different day."
And she scheduled accordingly. I headed into a breast ultrasound at 1:15pm Thursday. My abdomen ultrasound, to investigate my liver, was scheduled for 4:15pm.
A(nother) full day of appointments at Mayo
My twin sister, her husband, my mom and baby sister, and me headed to Mayo Clinic on Thursday for a morning of meetings with my sister’s doctors--oncologist, surgeon, nurses, and our “shared” primary doctor--before my ultrasounds. Our primary doctor dropped in to check in on my sister and to touch base in person about the ultrasounds and breast MRI biopsy appointments that were on my schedule for this coming week. I had sent her a message in my patient portal Wednesday because I wanted to make sure I absolutely 100% needed all of the tests she'd ordered before I went through with all of them. She assured us they were all necessary (“I know it’s not fun to feel like a pin cushion, but we need to do this!”). She gave us some insights about why I had both ultrasounds and MRI biopsies on the schedule: basically, to make sure we have all of the information we need about what type of cancer I have before I meet with my mastectomy surgeon.
She explained all of this while she limped off to an MRI of her own--she explained that she tweaked her knee the night previous while walking her Goldendoodle when her legs got wrapped in the leash and her sons and dog took off running. She heard two pops in her knee and had to use her eight-year-old as a crutch to get back to her house. She said she might need help coming up with a better story than that to explain why she was limping around everywhere but was having trouble coming up with something other than saving someone from the third floor of a burning building while jumping out of a window into a tuck and roll which she said didn’t seem very believable. I said I would work on coming up with something but I think her original story works well: a potentially-torn-ACL-by-Goldendoodle is a pretty memorable sequence of events.
What a breast ultrasound is like
My breast and axial lymph node ultrasounds were largely uneventful (thankfully). I laid on a table under a warm blanket while they searched around my chest for the suspicious areas that were found on the MRI. I told the tech all about how I thought I only had Stage 0 DCIS until my twin sister was diagnosed with stage 2A invasive ductal carcinoma last week. Because my twin sister is working with the same doctor as me at Mayo Clinic’s Breast Clinic (which is an amazing story I wrote about at this link) and has to go through chemotherapy while I thought I only had Stage 0, my doctor ordered me an MRI to make sure “nothing invasive was going on” and they found these potentially invasive spots which was what brought me there today.
The tech listened and nodded and smiled and asked me what I did for a living while looking for the suspicious spots and marking my chest up with sharpie marks and telling me to roll over or shake my hand out so my arm didn’t fall asleep above my head. She talked to me about what it was like to grow up with twin sisters because she was the older sister to identical twin sisters (“I’d always try to break up their fights then they’d both turn on me!”) and after an hour of ultrasound-ing she went to get the radiologist.
The radiologist came in and said she got some good images. She said she had just called the MRI department as well as my doctor and decided that one of the two suspicious spots on my right side was likely benign and didn’t need to be biopsied, especially since I was planning to do a bilateral mastectomy anyway, “to keep the poking and prodding to a minimum" (which I appreciated immensely). But the second spot they flagged on the MRI was still there and would need to be biopsied with an MRI biopsy. And I had two enflamed axillary lymph nodes—one on the left and one on the right—that they wanted to biopsy “just to be safe” because if they came back positive that would “change the course of treatment” (meaning, like my twin sister, I would need to get chemotherapy too). They sent me to see a scheduler and I set up some appointments: I’m getting an MRI breast biopsy next Tuesday morning at 9am for a "2.6 x 2.2 x 3 cm at posterior depth" “BI-RADS: 4: Suspicious” area in my right breast, and at 1:30pm, they are going to biopsy two enflamed axillary lymph nodes: one on my right side and one on the left. So those two procedures will tell me 1) whether or not the cancer is invasive in my right breast and 2) whether or not the cancer has spread to my lymph nodes. If the answer to either of those questions is “yes,” chemotherapy is in my immediate future (HELLO! WHIPLASH!).
What an abdominal ultrasound is like
After my breast ultrasound was complete, I went one floor up—to Gonda 3—where I checked in with the abdominal ultrasound folks. I went back with a technician who asked what I did for a living (“I’m getting a Ph.D. in journalism,” I said, “because someone has to solve the fake news problem!”). He asked if I had any kids. ("We don't, but do our two collies count?" :)) He told me he had three daughters, was expecting his first grandchild next month, and asked what I do for fun. I told him golf, basketball, working out, and my husband was a worship pastor so I play a lot of music with him. “What do you play?” He asked. “You name it: piano, guitar, bass, saxophone!” I said. “What kind of sax?” He asked. “Alto!” I said. “I play tenor!,” he said, “But none of my daughters would play sax. They all played clarinet like their mom.”
Another example of why Mayo technicians, nurses, doctors, you name it, are so cool. Sax players unite!!!
He also told me all about a patient he had who analyzed facial expressions for a living and another who analyzed handwriting for a living. The facial analyst worked for corporations during interviews and for the government interpreting individuals’ expressions and hidden motives. The handwriting analyst went into correctional facilities to help the inmates improve their handwriting in hopes it would help them have better chances of “making it” after they left prison. “She said the people she worked with had a high percentage of making it,” he said.
He had been moving the ultrasound and warm gel from the left side of my abdomen to the right, and he started pressing around between my ribs below my sternum fairly hard. "Breathe in and hold," he'd say. Then a photo. "Exhale," he'd say. Another photo. He took lots of photos of that area. I thought that was weird. So I asked, “Is that the spot the doctors are concerned about?”
He said, “Well, I know where the spot is but I’m technically not supposed to tell you. They made us sign a waiver.”
“Oh! Right. You don’t have to answer!” I said.
“They didn’t actually make us sign a waiver! See, that’s why there’s all this fake news. Because journalists believe everything they’re told!”
Ha, ha! I laughed.
The scan went on for another 10-15 minutes as he went from my spleen to my liver to my kidneys to my gall bladder. He told me he was going to talk to the radiologist and that I could get dressed because he didn’t think we’d need any other takes. After 5 minutes he came back and said:
“So the doctor told me it was okay for me to tell you that there’s nothing to worry about. It’s just a cyst on your liver, about 2 to 3mm in size, so you are free to go.”
I smiled and gave him a high five and said “THAT IS THE GREATEST NEWS I HAVE HEARD THIS WEEK!!!”
(I DIDN’T HAVE METASTATIC CANCER IN MY LIVER!!!!!)
I had to ask: “And I’m just curious: is there any way the cyst could be caused by drinking too much Red Bull?”
He smiled and said, “No. You can have as much Red Bull as you want!”
He walked me out and said, “You can exit to the lobby that way. The doors only open for princesses!”
I walked toward them and they opened.
“See?” He said.
“It’s magic!” I said.
I basically floated--danced--jumped through the lobby toward my husband (slash prince :)) who was waiting for me, SO EXCITED that I didn’t have metastatic cancer in my liver!! It’s the little victories I cling to right now, that’s for sure :)
Counting our blessings / the road ahead
All that to say, God is so good. I appreciate prayers that the three biopsies I have next Tuesday are absolutely nothing to worry about and that we can proceed with my plan to do a double mastectomy with reconstruction on Dec. 3rd (details to come on that soon)!!! However, worst case scenario would be me going to get biopsies of the "2.6 x 2.2 x 3 cm at posterior depth" “BI-RADS: 4: Suspicious” spot in my right breast and of my two enflamed axillary lymph nodes next Tuesday and my cancer turns out to be invasive and/or has spread to my lymph nodes. If that is the case, I will have to do chemo, but I’ll get to do it with my twin sister at Mayo Clinic. Either way, God is good and JESUS is in control!! Not that He ever needs to, but Jesus has proven himself faithful in so many ways along this journey and we are so thankful to be in his healing and loving arms.
A few of the blessings we’re counting right now: Doctors who encouraged us to take part in early breast cancer screening at age 30, 10 years before our mom’s DCIS diagnosis; our grandparents’ history at Mayo (they went there for years for their annual physicals); national rankings leading us to Mayo Clinic in the first place; for the incredible doctors we are currently working with at Mayo Clinic; the blessing of having my sister’s cancer not spread to her lymph nodes; the prayers, love, support, cards, and gifts from family and friends; and so many more blessings that I can’t wait to share in coming months.
If everything goes well, and my cancer is not invasive, I will meet with my mastectomy surgeon on Friday, November 1st. My operation date will be Tuesday, December 3rd: the plan is double mastectomy with immediate reconstruction. Then 4 to 6 weeks recovery time. If it's invasive, my plans will change dramatically. I really have no idea what my future holds at the moment. But does anyone really know? I just have to trust Jesus: "Many are the plans in a person's heart, but it is the LORD's purpose that prevails." -Proverbs 19:21