This blog post is the 23rd 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 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; and the 22nd post was about my twin sister’s first infusion of T-DM1 at Mayo Clinic. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
Yesterday was my six-month Survivorship Consultation at Mayo Clinic’s Breast Clinic in Rochester, Minnesota. In some ways, it seems like just yesterday that I had the double mastectomy with direct-to-implant reconstruction operation that cured me from breast cancer and basically saved my life. In other ways, it seems like it’s been years since my operation.
Today, the patient is doing well. She has no breast/chest wall concerns. Shoulder mobility remains intact. She reports no edema in her breasts. She notices no persistent mood changes since cancer diagnosis. She has no body image or sexual function concerns. She is exercising and weight is stable.
As I’ve said before, Mayo Clinic is amazing. Main concerns I brought into my meeting today were questions about recurrence. What should I be looking for or be aware of? Did the cancer come back already? How would I know? I had no idea I had breast cancer in the first place last year because I had no symptoms or lumps. So how was I supposed to know if the cancer comes back?
My advanced practice provider / survivorship clinic notes from our meeting today read:
There is no evidence of malignancy on today’s clinical breast examination and review of systems. We reviewed breast cancer risk reduction strategies. Encouraged monthly self examination. Discussed follow-up recommendations for breast cancer surveillance following cancer diagnosis and treatment. Recommend clinical breast exam every 6 months for 1st 3 years following cancer diagnosis and treatment and annually thereafter. Routine breast/chest wall imaging is not needed.
I was so relieved to know everything checked out okay! It looked like my cancer was (still!) all gone, and shows no signs at this point of coming back. My nurse practitioner let me know that, along with a healthy diet, alleviating stress in my life, avoiding alcohol (which has interaction effects with estrogen) and tobacco, and taking good general care of myself, there is a “very low chance” that my cancer will ever recur. Obviously, no one can predict the future, but the odds are good that I’ll never have to deal with breast cancer again.
But, my twin sister and I are part of the less than 2% of women who get breast cancer under the age of 40. And actually even less than that, because 65% of those 2% are between the ages of 35 and 39. So, given that my twin sister and I are part of the 45% of the 2% of women under the age of 40 who get breast cancer in the first place, I will always be overly suspicious of the tiny bit of breast tissue remaining in my chest and of my “chest wall,” which is close to my former breast tissue and is also a place where recurrence sometimes occurs. (Not to mention we are at risk for ovarian cancer, too, given family history. But I had a consult with a Mayo Clinic oncological surgeon about that risk in January. She said it’s not a high enough risk to remove my ovaries until I have children if my husband and I want them and told me to come back in 10 years after we’ve expanded our family. She also set me up with a primary care physician closer to home to help me make sense of all that. More on that in a future post!)
To mitigate the fear involved with this, I felt much better after my nurse practitioner showed me what a thorough physical self-exam with implants looks like. She said everything looked good, but to let me know to let them know about any lumps, bumps, changes in skin composition or color, or pain that I experience. “We are here for you!,” she said. So I’m very happy that I’ll continue to go to visit Mayo every six months. Because they’re the best.
Battling fatigue
Another main concern I brought up to my nurse practitioner today is the fatigue I’ve been experiencing in recent months. I was totally fine for the several weeks after my surgery, then all of a sudden, six weeks after my surgery, I got this super suspicious rash called “pigmented purpura” and was so fatigued I felt like I’d gotten hit by a train. I was sleeping 10 to 11 hours a night and felt like I was wandering around in a brain fog all of the time. It has gotten better in recent weeks, but only little by little.
“Will I ever be back to what I felt like before surgery?,” I asked. “Normal?”
She said that I would, but that sometimes it takes up to a year–and sometimes a bit longer–to really feel like “myself” again. Regular exercise helps a lot with battling fatigue, she said. So, when I got home from my appointment yesterday evening, instead of taking a nap like I wanted to, I biked 5 miles on a stationary bike and walked my dogs for a mile after that. Hopefully those sort of decisions helps me in the long-term! In the meantime, I’m finding God is trying to teach me patience in real-time by requiring me to be patient with myself and my own physical, emotional, and mental limitations.
Trusting God in uncertain times
“How are you doing, especially with everything going on with the world right now?,” my nurse practitioner asked me.
I paused for a moment, because I didn’t really expect that deep of a question, or know really how to respond. I teared up a little bit in spite of myself. Honestly, I am pretty upset and stressed given that we are in the middle of a global pandemic and a global reckoning with systemic injustices–all while I’m recovering from cancer and my twin sister is still going through chemotherapy. But, as the eternal optimist that I am, I said: “As well as can be expected, I think. I’m trying to be kind to myself, and am taking things one day at a time.”
She said that sounded like a good plan, and asked what sort of outlets I had to process everything I’ve been through. I let her know my husband is a pastor so I spent a lot of time at church, that I love to work out and play golf, and that I love to spend time with and process things with family and friends. She said it sounded like I had a good, balanced routine, and to keep that up.
She asked how my workout routine was going. I said that I’ve been doing elliptical work, biking, and lifting dumbbells and walking our dogs. I told her that I tried to run a few weeks ago and had to stop after three blocks because my foobs started tingling and going numb and being super uncomfortable–even strapped into the super amazing and supportive sports bra that I purchased from SheFit last month that I love. She let me know that’s totally normal because my nerves were severed in the operation and are still in the process of healing and figuring out what’s what inside of my incisions / around my implants.
That reminded her that she had a free sports bra from Athleta to give me as a gift from the Breast Clinic!, and said that I hoped I liked it. I could expect that sort of sensation as I heal for a while, she said, and that I should “listen to my body” and stick with elliptical or biking exercises with less impact than running for now. I can do that! I also asked if I’d be able to ever do “the worm” again because I like to do that break dance move at wedding receptions, etc., but wasn’t sure I could after surgery. She laughed and said that, if I do it right, I should be able to do that dance move again in due time 😉 I WAS STOKED TO HEAR THAT!!!
I told her that, emotionally, I was grateful for hearing about the “Five Stages of Grief” from a nurse at the Breast Clinic during my initial breast cancer diagnosis appointment. I told her that I’d gone through most of the stages–denial, anger, bargaining, depression, and acceptance–in no particular order. She smiled and nodded.
I was talking with a friend this week, reflecting on what it was like to get diagnosed with cancer last year. She asked what it was like to be diagnosed with cancer and put the (other) plans I had for my life on hold. The response that popped into my head was from Proverbs 4:25-27. My response was: Sometimes God calls you to something, and you can’t look to the right or the left because it’s so abundantly clear that He wants you on that path. For me, last year, it became clear that, for me, being diagnosed with and treated for breast cancer was the way my life was going to go at that point in time. So I basically put my head down, prayed, and persevered. Now I’m a survivor!!! Now what?
Building resilience
At the end of my meeting with my nurse practitioner, she gave me some literature that discusses the importance of exercise, healthy nutrition, and building resiliency as a cancer survivor. She also gave me some literature with tips about how to manage stress related to COVID19, and encouraged me to focus on cultivating resilience through practicing gratitude, accepting my circumstances, and living a healthy lifestyle.
“You’re doing a lot of that already, so keep it up,” she said.
On my way out of the clinic, I ran into my twin sister’s chemotherapy coordinator who told me it was nothing short of a miracle that my twin sister got in for her breast cancer surgery before Mayo shut down all elective surgeries in March. I also dropped off a thank you card we put together for our double mastectomy surgeon that we were unable to give to her after my sister’s surgery because COVID made everything hit the fan the week after my sister had her surgery (all doctors visits went online).
As my husband and I walked out of the breast clinic, I heard someone yell:
“Hey! You! Pink tshirt!”
I turned around and a woman at the Gonda 2 checkin desk was waving.
“How are you and your sister doing??? I’d recognize those tshirts anywhere!”
My husband and I walked over to the front desk, laughing. We told the front desk staff all about how my sister and I are doing, how my sister is going through TDM1 every three weeks, and how I was celebrating my 6 month survivorship appointment today. They were very excited for both of us, and said they’d see us soon.
“We love your shirts! And we’re here for you guys!!” they said.
I texted everyone to let them know we absolutely have to wear the matching pink tshirts I made for everyone (and our doctors :)) every time we visit because it’s how the Gonda 2 folks will identify us 🙂 My work at Mayo today was complete 🙂
What’s next
In six months, I’ll go back to Mayo Clinic for my one-year survivorship clinic appointment and physical exam with my breast clinic doctor. I’ll also have a one-year follow-up with my plastic surgeon. In the meantime, my twin sister is going through her regimen of TDM1, administered every three weeks at Mayo Clinic in Rochester, for the next 9 months or so–then she’ll join me in the survivorship clinic!!!
Thank you again for your continued prayers–God is good!!!
This blog post is the 23rd 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 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; and the 22nd post was about my twin sister’s first infusion of T-DM1 at Mayo Clinic. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.