This blog post is the ninth 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; the sixth post is about my twin sister's invasive ductal carcinoma clinical stage 2A breast cancer diagnosis; the seventh post is about my breast MRI and two ultrasounds to investigate "suspicious" spots on my right breast and liver; and the eighth post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic. To keep tabs on new posts, sign up for the "A Daily Miracle" email list at this link.
My life turned upside down two months ago when two radiologists came in to talk to me after an abnormal mammogram and told me they needed to do a biopsy, preferably right then. I knew at that point that my life--at least for the foreseeable future--would never be the same. Once I had my DCIS diagnosis, I had a plan: Meet with a great doctor, schedule meetings with great surgeons, make sure I made all of my appointments at Mayo Clinic, and I was all set. Walking through cancer for myself was something I had a handle on. But then, for some reason, watching my twin sister go through a diagnosis that's "worse" than mine was much harder than I'd anticipated. Knowing my cancer is Stage 0 while my twin sister's is Stage 2A causes me to feel a bit of "survivor guilt." Yes, one of the main reasons my twin sister got her cancer checked out was because I got diagnosed in the first place, but why is she the one that has to go through chemotherapy AND a major surgery and "all I have to do" is a double mastectomy? The worst thing has been my talking to two people in one week who lost their sisters to breast cancer this year. Not to mention how stressful it's been watching my baby sister's anxiety rise as she realizes, at age 25, her future might look a lot like ours and she needs to start breast cancer screening ASAP. As my twin sister's boss said to her about her diagnosis: "THERE IS NO JUSTICE IN THIS!!!"
I know I'm only 8 minutes older than my twin sister, but I was always the taller twin (by 3/8 of an inch), the stronger twin (I've weighed ~10% more than her our whole lives and as a result have been able to weightlift more than her on a consistent basis :)), and the more outgoing twin. Not that being taller, stronger, and more outgoing means I am better served to get through chemo--I've heard it's a mental battle as much as a physical one--but I still feel mostly helpless. Not to mention there's still a tiny chance when they open me up at my double mastectomy that they find invasive cancer and I'll need chemotherapy too. I don't know. But God knows!
I've tagged along to a lot of her doctors' visits to make sure I understand exactly what she's going to be going through and how I can best support her, and I'm going to as many of my baby sister's screening visits as I can as well. But attending doctors' visits doesn't change the fact that my twin sister is the one who's going to have to go through 6 rounds of chemotherapy before her double mastectomy to be followed by some more chemo/hormone therapy after the surgery. She's likely going to have to endure fatigue, exhaustion, potential nausea, and "chemo brain"--while I get to "skate by" on bed rest for a few weeks after my double mastectomy.
One major thing my sister and her husband have had to go through is talks about fertility. The most surprising thing we've learned on this journey is that chemotherapy might eliminate your chances of having kids naturally. That's because the chemo might impact the viability of the eggs in her ovaries. Also, during chemo, her doctors are going to suppress her ovarian function to hope to protect them, but there is a chance she will never regain regular ovarian function after chemo is over. That chance is small, but she and her husband decided to move forward with egg banking "just in case." Thankfully, she and her husband were able to book appointments at a fertility clinic in the city two days after her cancer diagnosis and the clinic rushed her case due to the fact she's a cancer patient. They just completed two weeks of hormone shots to stimulate egg production to lead to an egg retrieval procedure that they had last week to freeze some eggs that will be waiting when chemotherapy is over and they're ready to start a family. Because she was so responsive to the meds / hormone shots, they were able to retrieve more than 25 eggs during the egg retrieval procedure, which is over double what they are normally able to retrieve in these procedures! As a result of her high responsiveness she is also experiencing cramping after the procedure and is in a fair amount of pain. They told her up front she was a candidate for "Ovarian Hyperstimulation" due to the fact she has polycystic ovarian syndrome/PCOS (like I do, too), but the retrieval procedure was extremely effective, so she is optimistic that in two weeks she should feel much better and she's just dealing with a very mild case of OHSS that will subside soon. Just in time for chemotherapy to start!
We've learned a lot in the past two weeks. My mind is ready to explode. Between talks with internists, oncologists, and NPs; an "Introduction to Cancer Care" class at Mayo Clinic last week; and "Educational Visits" with chemo nurses, I decided to write all about what I've learned about chemotherapy and invasive breast cancer treatment through observing my twin sister's journey. Here are some major takeaways: Not all chemotherapy is created equally; chemo has scary side effects but there are medicines like Neulasta and mechanisms like "cold caps" to potentially prevent hair loss that happens often in chemo; chemotherapy might take away your chances of having kids naturally; and you have to choose between chemo administration through an IV or a port.
Not all chemotherapy is created equal
My sister got two opinions for what chemotherapy regimen to pursue--one from an oncologist at a hospital in the city, and another at Mayo Clinic in Rochester. They were different recommendations, which surprised us, because in a perfect world, every doctor's recommendation would be the exact same. At the end of the day, my sister chose to go with the Mayo Clinic-recommended regimen because she was more comfortable with the chemotherapy recommendation and the team-based approach where an oncologist, radiologist, internist, surgeon, and nurse practitioner met together to discuss her specific case and made decisions together about what they thought would be the best plan for her moving forward. While it would have been just fine for her to be seen at her local breast clinic/hospital, it doesn't hurt that Mayo was recently ranked the #1 Hospital in America by U.S. News and World Report AND we've had amazing personal experiences there.
The chemo options presented to her were extremely detailed and I'll outline them below but before I do the two major things they told her are a) My sister can definitely plan to work through chemo and plan to have some good and bad days--some people even "fly" through chemo with hardly any side effects and b) It's super important to keep a journal during every day of chemo administration and recovery so you know exactly what side effects to expect when in the cycle of treatments.
Here are the chemo options and their side effects:
MAYO CHEMO OPTION 1 (this is the one she chose):
TCHP: This regimen is six 6-hour cycles with 1 cycle occurring every 3 weeks, equalling 18 weeks total. That's 4.5 months of TCHP, in 6-hour doses administered every 3 weeks. Here are the components: T = Taxotere (potentially causes a neuropathy side effect in the hands and feet that can be evaded by wearing elastogel gloves and booties during treatment to make sure any nerve damage that might occur doesn’t become permanent; also, during the second administration of "T" is where a lot of patients have a reaction during administration; you can feel warm, there might be some redness, and a flushing feeling comes over you) + C = Carboplatin (a platinum administered especially to BRCA patients--we don't know if my sister is BRCA but it doesn't totally matter, this should work the best for her regardless) + H = Herceptin (specifically for HER2+ breast cancer patients; can be hard on the heart and has a 2-3% risk of reversible cardiomyopathy. But my sister will be getting echocardiograms, aka an ultrasound of her heart, before she starts and every 3 months during treatment) + P = Perjeta.
Side effects of chemo include lots of things. Some of the most pressing are potential hair loss, nausea, diarrhea, and potential heart failure. Fatigue builds throughout chemo treatments over time. Medications are administered around the chemo infusions that will help with nausea and Imodium is recommended if diarrhea develops. 48 hours after infusion are often a “bad day.” But she will have good days and bad days. With blood labs throughout treatments, her doctors will keep an eye on her blood counts--specifically hemoglobin and white blood cell counts. At Mayo Clinic, they administer medicine along with the chemotherapy to get ahead of side effects as best they can. My sister will do echocardiograms on a regular basis to make sure her heart is functioning as well. She will also be on 5 prescription medications (including Benadryl and Neulasta) along with 4 types of chemotherapy.
One question we had for my sister's doctor as we listened to all of this: "This sounds really intense. Is this the lightest chemo treatment possible for her case given it's only clinical stage 2A and is not in her lymph nodes?"
The doctor said, "Yes. Looking at your case, as your tumors are small, we are leaning toward over-treating right now, but this is what we need to do.”
The oncologist also noted that there is a more intense option--his second option, and the first option the city doctor presented to my sister--that is harder on your heart that he did not recommend for my sister: THP + AC. This was the regimen recommended at the hospital in the city as the "nuclear option." The oncologist at Mayo Clinic said it's not a "wrong" regimen to recommend, but that he prefers to avoid this regimen because both regimens have been proven to be equally effective and because ACT brings along with it a higher risk of heart failure or even a risk of leukemia (1 in 300-400). "I want to avoid this risk," he said.
"When should she start?" we asked.
The doctor said, "We need to get a heart ultrasound and a port installed before the chemo starts. We could start as early as next week, but I also wouldn’t wait longer than 6 weeks."
The doctor encouraged her to pursue genetic testing--both for BRCA and for ATM, and some other genes.
"If I were BRCA positive, would that change my treatment plan?" my sister asked.
"No," the doctor said.
So she isn't doing genetic testing right at this moment, but it is something she's considering. She also had an option to opt-in to a clinical trial for individuals on TCHP where heart medication would be administered to 1/3 of the test group, but she opted out. It's nice to know Mayo has clinical trials available, though! Not to mention therapies developing all the time. Her oncologist said that there are several options for treatment after surgery and he will make a decision at that time depending on how she responds to this first round of chemo before surgery. For example, after surgery, if there is cancer left over, they can potentially go with a drug called T-DM1, which is a "new" drug since mid-2010s, around 2014-2015, for treatment of HER2+ breast cancer. It came from a new study completed last December. Tamoxifen is likely an option but he will make those decisions after the surgery is complete.
She will be receiving chemo on the 10th floor of Mayo Clinic's Gonda Building, starting in week 4 after our meeting with the oncologist. There are only two chairs for chemo visitors, but we can rotate out and in from the waiting room. There are 48 chemo chairs, and between 150 and 180 people are rotating through receiving chemo here at one time.
One question my sister had was if she could do chemo in the city, closer to her home, even potentially in conjunction with Mayo to check in on her occasionally? The answer was Yes, she could. Which was nice to know. But she chose to go to Rochester for her infusions, a decision we back 150%!
IV vs. Port
Through conversations with her friends who are nurse practitioners, my sister decided to go with a port instead of an IV, which is a tiny operation she had to do to have it implanted under the skin in her chest with a tube that connects directly into her aorta to be distributed throughout her body's bloodstream. This way she won't have to be pricked with an IV in her arm every time she goes in for chemo--which would have had to be 6 hours of intravenous distribution. We were also told by doctors and nurses that, typically, HER2+ patients choose to have a port. She has been sore for several days after it was put in but she can always have it taken out down the road if she so chooses!
Cold caps are $500, and you can buy them from a company called Paxman. You pay incremental amounts per treatment for total of $2,200 out of pocket. 50% of people who use these during chemo lose less than 50% of their hair. So we are investing!
Chemotherapy can potentially eliminate your chances of having kids naturally.
Chemo kills a lot of cells in your body. And potentially damages your eggs. This might not be a problem for women who have had kids already or don't want them, but this means that my 30-year-old sister and her husband who would very much like to have children had to hop on the fast track of family planning as soon as she got her diagnosis and treatment plan. For them, that meant going to a fertility clinic in the city and doing egg banking. This means a series of hormone shots to stimulate egg production over the course of two weeks followed by a series of ultrasounds and ultimately an "egg retrieval" procedure where doctors put you under and go in to harvest some eggs that are stored in a freezer for an indefinite amount of time. (One question we had about this: estrogen is often used to stimulate egg production. Given the fact her cancer is "estrogen receptor positive," does this mean Estrogen stimulation of egg production would make her cancer spread?) We asked her oncologist and NP this and they said it's such a short amount of time and small dose of estrogen that it should be totally fine. SO, when my sister is done with her cancer treatments, they can retrieve her eggs and attempt pregnancy through IVF. (Yay!) They are also likely going to suppress my sister's ovarian function during chemotherapy. They will start them back up again after chemo is over.
What happens after surgery?
40 - 50% of people get to surgery and the tumors have gone away or have shrunk quite a bit. If tumors have only shrunk a bit, she would still need to do some targeted HER2+ treatment. The ideal situation is the tumors have completely shrunk and she can only do a bit of hormone therapy or chemo at a low dose after the surgery. We trust her doctors and know God has a perfect plan.
Revisiting the Five Stages of Grief + Eating Healthy + Working Out
When I received my Stage 0 diagnosis, one of the nurses told me that I should expect to grieve my diagnosis emotionally as I would any other grief I might experience in the "Five Stages of Grief:" denial, anger, bargaining, depression, and acceptance. She said I shouldn't be surprised if I start crying while watching Netflix. Or doing another random activity. That the tears could come at any time. I've still only cried once during this whole time (at the very beginning, before my first biopsy, when I realized how inconvenient all of this is), so I'm concerned I'm going to burst into tears at the most inopportune time. For now, I constantly feel like my brain is in hyperdrive, like I'm hype on adrenaline. That has helped me to knock out a lot of the work that I'm going to miss while I'm recovering from surgery. It's like God is giving me extra energy without requiring me to take in a constant stream of Red Bull, even though my doctors told me I could keep up my normal Red Bull regimen if I wanted to. (Yes, I asked!)
I'm encouraged to see that my twin sister's prayer right now is that her chemo before surgery would be 100% effective and they'd get to surgery and find a "complete pathological response"--meaning the tumors are completely gone!! That is acceptance if I've ever seen it :) We are also praying she has strength to "fly through" chemo like some of our doctors have said happens occasionally. God is good and we are grateful for encouraging words and prayers from friends--not to mention cancer care gift packages from places like Phil's Friends, encouraging Bible study groups, and family. Preparation has also included healthy eating--Beating Cancer With Nutrition is a book we've been reading together and shopping according to the list of good foods in the book. Chicken, whole grains, veggies, and fruit are excellent foods to eat. Sugar is bad. We've also been following principles of the Whole30 / KETO diet.
When I was first diagnosed, I felt like I skipped over the first four stages of grief and hopped right to acceptance. But now that I'm watching both of my sisters have to go through screening and diagnosis, I've experienced a bit of what I would call righteous anger, which I've channeled into working out as much as I can to get JACKED TO BEAT CANCER!!! My sister and I took a picture at the gym last month to show how serious we are about this. Maybe Ronda Rousey or Holly Holm will come visit my sister during her chemo regimen for inspiration. If so or if not, my sister is starting chemo on Friday, November 8th. In the meantime, I'm meeting with my surgeon on Friday, November 1st to set an official date for my surgery.
Until next time!