This blog post is the sixth 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; and 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. To keep tabs on new posts, sign up for the "A Daily Miracle" email list at this link.
"Boobs are great until they try to kill you. Then it's time to CUT THEM OFF!" "This has been a heck of a month." "Go forth and conquer!" "I need to sit down." "At least you know you're not alone. Jesus is with you all the time!" "Knowledge is power!" "How can I help?" "Ugghhh." "I feel like I'm living in some kind of awful alternate reality." "F CANCER!" "You are making a brave choice."
These quotes have all been spoken by people around me this past week as my breast cancer journey went from bad to worse. It's bad in the first place because cancer sucks. (One of my colleagues the other day said, "When you talk about this, you sound like you just stubbed your toe. It doesn't sound like you have cancer." But seriously. Cancer sucks.) The "worse" part came when my twin sister got rushed into a breast biopsy at her breast clinic last Friday due to two lumps that were found by her gynecologist last month AFTER her initial mammogram and ultrasound screening.
My twin sister's journey kicked off during my diagnosis meeting with my doctor on September 25th, when she heard my doctor say to me: "It's great your cancer is contained in the milk duct. It's a good thing there isn't a lump." That reminded her of her physical exam she had with her gynecologist a month previous: Even though she'd had a preventative mammogram and was called back for an ultrasound to examine her "dense tissue" in August, they sent her away without any concerns. Then two days after her mammogram and ultrasound, her gynecologist discovered a lump in a physical exam. However, her gynecologist sent her away with no concerns: She was convinced if the lump were serious the mammogram and ultrasound would have caught it. So here we were, sitting at Mayo Clinic a month after her gynecologist found her lump, and my sister decided to get it checked out again--just in case. My sister went in to have another ultrasound on Friday, September 27th with the same radiologist that had done the ultrasound a month previous, only this time, the radiologist found not only one lump, but two. Not only did they find two lumps, but they recommended my sister go on to have a breast biopsy immediately, that day. The area was locally numbed and the procedure took 25 minutes. The radiologist did the ultrasound-guided biopsy and a nurse took the photos for the ultrasound. Another nurse came in to hold my sister's hand. They got three takes from the first lump and four takes from the second lump. The samples were then sent to pathology. Waiting over the weekend was terribly stressful but we saw a Luke Combs concert and we got coffee with a 30-year-old friend who also had cancer last year which was incredibly encouraging and inspiring in the waiting. As she told us over coffee: "Cancer is a scary word, but there is power in using it!"
My twin sister's results came back on Monday, September 30th: It was invasive ductal carcinoma, IDC.
Ironically, my twin sister called us with her diagnosis while my husband, mom, youngest sister and I were meeting with my plastic surgeon at Mayo Clinic. We were planning out my breast reconstruction surgery set to occur on December 3rd (there will be a blog post coming about that meeting soon) when my youngest sister's phone rang. My twin sister's diagnosis was a shock to us. My ears started ringing. My sister and mom started crying. The nurse brought them Kleenex. Our appointment quickly diverted to my sister's diagnosis, and I told my plastic surgeon that she'd likely be meeting my twin sister in a few months. She said she was looking forward to that. She also told my youngest sister who was in the room that it would probably be a good idea for her to start breast cancer screening now, at the age of 25. My plastic surgeon also said she'd plan to send my primary doctor a note in the portal to see if she could see my sister as a patient at Mayo ASAP.
Right after my plastic surgery doctor's appointment was over, my mom and sister went down to the Breast Clinic at Mayo Clinic to see if my twin sister could get an appointment there ASAP. They said my sister would have to call the appointment desk and they gave us a card with a number to call. My sister called Mayo Clinic and scheduled an appointment for October 23rd--which seemed like an eternity away given her diagnosis was invasive--but as soon as hundreds of people started praying and I sent a personal message to my Mayo doctor on the Mayo Clinic app, my sister got a call. My doctor would be able to fit her in at Mayo on Monday, October 7th!! HALLELUJAH!
Before we even knew my sister had gotten in to Mayo, my sister made an appointment at our local breast clinic for Friday, October 4th, the same clinic that had done her tests so far. We--my twin sister, her husband, my baby sister, and our mom and dad--met with one of the top surgeons in the Twin Cities at 7:30am. At this point, all we knew was that my twin sister had invasive breast cancer. The surgeon told us it was invasive, clinical stage 2a, Estrogen receptor positive, Progesterone receptor negative, and Her2 positive. With this diagnosis, we were informed that she needed to have 4 months of chemotherapy (Herceptin, which will be administered every three weeks, in conjunction with a few other chemo drugs to be determined at an oncology appointment), followed by a double mastectomy + reconstruction (my sister's choice--she could also potentially do lumpectomy with radiation), followed by 8 more months of Herceptin (chemo). After surgery, my sister would have to take Tamoxifen for 5 years.
As her doctor said, “We’re going with the big guns up front. We are going to cure this!”
We left that appointment overwhelmed with my sister's diagnosis and treatment plan. That's when we got the call that my Mayo Clinic doctor could see my sister that next Monday for a second opinion/diagnosis. Which was an AMAZING ANSWER TO PRAYER--we had been so discouraged she'd have to wait to see someone at Mayo on October 23rd but the same doctor I've been seeing called her that morning and opened up her schedule for my sister to have an intake appointment at Mayo on Monday, October 7th. I went along because, to be honest, the fact my sister's breast cancer was invasive and would involve chemotherapy freaked me out. How were my doctors sure mine wasn't invasive if all I'd had was a mammogram? And why hadn't I had an ultrasound or MRI?
We arrived at Mayo Clinic with my sister and headed into the doctor's office. As we filed in, my doctor came down the hall and asked, "You're Allison, right?" After confirming my identity and making some twin jokes (she correctly guessed that we are 8 minutes apart!!), she asked:
"Do you want to get an MRI? Especially given your sister's diagnosis, I think it might be a good idea to make sure you don't have anything invasive going on."
"Well, I don't really want to, but if you think it's a good idea, let's do it."
My doctor scheduled me for an MRI at 5:30pm Monday. The results showed two areas of concern in my right breast, enflamed lymph nodes on the right and left sides, and a spot on my liver. I'm scheduled for an ultrasound to investigate all of that today. I'll publish a blog post about that experience soon. :)
Then, we went into my sister's appointment. She received a second opinion from our Mayo doctor who outlined a chemo regimen strikingly similar to the one the local surgeon had recommended. There is a 50% chance she will lose her hair during chemo, but "cold caps" -- cold hats you wear while chemo is being administered -- helps to maintain hair growth during chemo and Mayo gives them out for free as part of your treatment! She also heard about options for fertility given that chemo will likely kill all of her eggs and she and her husband want to have children. Her options are to: Freeze some eggs and/or stop her ovary function during chemo treatments and start them up again after it's over.
She also met with two nurses, our doctor, and an American Red Cross "Pink Ribbon" mentor who gave her a gift basket and told her she'd check up on her throughout her chemo process. I got a gift basket too, pictured above complete with fuzzy socks, stationary, a pen, and special moisturizing hand cream. ("I only have Stage 0, are you sure I need a gift basket?" "Yes! That is important too!") At the end of two hours, we knew my sister had a series of appointments set up with an oncologist, surgeon, and radiologist at Mayo Clinic on Thursday. We also knew that her records--pathology report, pathology slides, and MRI images and report--from the local breast clinic were on the way to Mayo Clinic--a day turnaround which was very fast but our doctor made sure she "pushed to have them sent in as soon as possible for the 'breast conference' (multidisciplinary team of my sister's doctors) to have plenty of time to look them over before Thursday's appointments."
So, my sister's diagnosis is Stage 2A Clinical "invasive breast cancer," or DCIS that became invasive into the breast tissue. 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 while my sister's DCIS has expanded outside the milk duct and created three lumps in her left breast. At first, they thought there were only two lumps. Then an MRI she got showed three. Then they thought it might have gone into her lymph nodes as well. They biopsied one of her sentinel lymph nodes last Friday to find out whether or not it spread to her lymph nodes, and after praying, recruiting hundreds of people to pray, and our husbands/a few of our friends fasting for 48 hours, we found out on Monday that her cancer HAD NOT SPREAD TO HER LYMPH NODES (or to her left wrist that had been hurting her). AMEN HALLELUJAH! Waiting for that result over that weekend was terribly stressful, like I mentioned. But it's all good. :)
While treatment of my cancer should be a double mastectomy, reconstruction, and done--unless my ultrasounds and potential biopsies today show my cancer is also invasive (surprise!)--my sister's treatment plan will involve 12 months of chemotherapy, a double mastectomy, reconstruction, and 5 years of tamoxifen. In the midst of this horrible news we are still finding ways to praise the Lord--both of our diagnoses were caught earlier than they could have been if we'd waited a year or two. Also, after MUCH prayer and supplication, my sister got an appointment at Mayo Clinic much sooner than we thought she would for a second opinion on the treatment plan our local breast center/clinic recommended. AND her cancer has not spread to her lymph nodes. She and her husband are in the process of deciding where she wants to do chemo and surgery: closer to home in the city or in Rochester, Minnesota.
Isaiah 55 and Psalm 119 have been incredibly encouraging during this season--Christine Caine also has a devotional on YouVersion called "Unexpected," about her own cancer diagnosis and dealing with news that's less than ideal in light of God's promises. Friends and family have sent us notes of encouragement and prayers, including some amazing songs: Won't Stop Now by Elevation Worship, In the Hands of the Potter by Casting Crowns, and Goodness of God by Bethel Music.
And so, in the midst of the chaos, we wait for the Lord!
One interesting question we've had in light of all of this, because every doctor we've seen has asked if we've been tested for BRCA:
"If we would have been tested for BRCA, is there anything we would have done differently, other than getting screened 10 years before mom's first diagnosis?"
Our doctors' responses have varied a bit:
"No. The only reason to be screened now is for your future children. 10 years before your mother's first diagnosis is sufficient." OR "Sometimes, they recommend breast MRIs starting at age 25." So, our 25-year-old little sister is freaking out (naturally) as we pray through who and when one or all of us should be tested for BRCA, if at all. And if she should start her breast cancer screening this year instead of age 30. Lingering questions remain as we hear the words of our doctors: "Someday, testing positive for BRCA may disqualify you from some life insurance coverage if it's classified as a pre-existing condition." We will see!