This blog post is the 33rd in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 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.
My twin sister just knocked out her 10th infusion of T-DM1/Kadcyla at Mayo Clinic in Rochester, and her baseline ovarian cancer screening results are in at Mayo Clinic in Rochester: THE OVARIAN CYST IS SHRINKING AND SHE DOESN’T HAVE OVARIAN CANCER, WOOHOO!!! Thank you all for your continued prayers for her deliverance and healing!!!
Here are a few highlights, praises, and new prayer requests for us at this moment in time (details follow in the blog post below)–we are literally praising God so much in recent days that we can hardly believe it!:
- Praise!: My twin sister’s “suspicious” ovarian cyst is “resolving on its own / shrinking” and is no longer suspicious! We are SO grateful that God delivered her from what could have been/turned into ovarian cancer and that all of our prayers have been answered: 1) The cyst is not cancerous! and 2) The cyst is shrinking and should eventually and disappear completely on its own!!! That means my twin sister doesn’t need to have the cyst OR any of her ovaries removed at this time!!! Thank you again for your prayers!!!
- Praise!: My twin sister is 71.4% of the way done with her post-operative chemotherapy regimen of T-DM1/Kadcyla! Her side effects have been minimal (a bit of nausea along with corneal cysts that have mysteriously developed but we’re hoping will go away after treatment is complete!), her hair is growing back in!, and she only has 4 infusions of chemotherapy left! We hope and pray this is the last time she ever has to do chemotherapy EVER!!! 😀
- Praise!: My twin sister’s microcystic edema keeps improving slightly and is stable, plus her eye doctors are both “hopeful” that it will clear up after her treatment is over! Last month, my twin sister woke up one Saturday morning and could see/read the clock in her kitchen and the closed captions on her television for the first time in three months! We are so grateful for her healing! She said it’s still a bit hard to see certain things especially in the days following each infusion of T-DM1, but it’s a huge praise that she’s stable/improving and her doctors are hopeful the cysts will clear up when treatment is over!!
- Praise!: My sister saw her dermatologist this week, who said that the “suspicious spot” on her back that her gynecologist inquired about a few months ago is “mildly atypical” but nothing to worry about! He wants to remove it to make sure it’s not cancerous, but there is “no rush” based on what he’s seeing at this point, so we’re waiting until Monday, March 8th–after her chemotherapy regimen is over–to do that procedure.
Emotional whiplash aka ovarian cancer screening results (she doesn’t need surgery right now and she doesn’t have ovarian cancer, YAY!!!)
My twin sister had a follow-up ultrasound the Friday after Thanksgiving (Black Friday!) to examine the suspicious cyst discovered about 6 weeks ago on her first baseline ovarian cancer screening ultrasound.
We had a nail-biting few weeks waiting for that follow-up ultrasound to happen, and I would be lying if I said they weren’t some of the most stressful weeks of our lives. We’d just received news that my twin sister had a suspicious cyst on her ovary. We were all mentally preparing to send my twin sister into the operating room for the second time this year to test for yet another cancer. That would be two major operations for her in a year’s time: First, to remove first her breasts; and second, potentially both ovaries, all while she’s been on chemotherapy.
My twin sister, who never cries, broke down and started crying during Bible study last month when she asked for prayer for all this. I was grateful she felt comfortable enough to share her request but it broke my heart to see her crying because I knew how difficult it was for her to process the fact that ovarian cancer might be in the cards for her at this point in time.
I asked my sister a few weeks ago: “What are you most afraid of?”
She thought for a minute.
“I don’t want to have to deal with another cancer,” she said. “I don’t want to have to go through chemotherapy again, either.”
She’s one of the strongest people I know and to hear this broke my heart. As her “big sis,” all I want to do is protect her from the scary and painful things in life or take the blows for her, but I’m totally helpless here because chemotherapy is what she needs to cure her cancer and I didn’t want her to have another cancer, either!!
We prayed together, but that didn’t necessarily make it easier to process or sit with the fact that she could have ovarian cancer.
Mercifully, after a few weeks’ wait, Praise the Lord that we received news last week that, due to results of her follow-up ultrasound, in a direct answer to prayer!, my twin sister got a call from the resident/fellow in the gynecological oncologists’ office who told her that, based on the ultrasound results, it looked like the cyst was shrinking, and that surgery would likely not be necessary!
When she called to share her exciting (and miraculous!) news, I wasn’t as excited as I maybe could have been, because I was taking all of this information in very cautiously and critically. Thoughts kept running through my mind about how the doctors missed her breast cancer tumors on her mammogram and first ultrasound in August 2019. I also thought about how initially we thought she’d had a complete pathological response at the time of her double mastectomy in March 2020 but that it turned out there was 1cm of cancer remaining at the time of surgery based on final pathology results that came later, which resulted in her needing to do another 9 months of chemotherapy instead of simple endocrine therapy.
My lack of celebration/excitement was definitely due to a severe case of emotional whiplash. It all started three weeks ago, when I wrote my last blog post about how we might need to send her in for surgery again. And then, today, we found out we didn’t need to send her to the operating room anymore! It’s a lot to take in / process–but God has proven Himself faithful again (and again)!
I wrote down several detailed questions for her gynecological oncologist appointment the Monday after her ultrasound results came in, and I felt much better after my questions were all answered in detail–the investigative journalist in me was satisfied. 🙂
Here is a summary of the conversation we had with the gynecological oncologist if anyone is wondering how that conversation went!
Joining the ovarian cancer “previvors” at Mayo Clinic Rochester
We had lots of questions prepared for our gynecological oncologist at Mayo Clinic in Rochester because, well, ovarian cancer would totally suck and we wanted to be 100% sure we were making the right decision in not sending my twin sister into the operating room at this point in time.
So, here are a few things we asked her via video visit and how she responded! The bottom line is that, just like I found out at my baseline ovarian cancer screening appointment last January, that we are in a bit of a pickle because ovarian cancer is so tricky to spot and screening hasn’t advanced to a place where it’s 100% accurate 100% of the time.
But, because we are moderate to high risk due to family history, our gynecologic oncologist recommended ovarian cancer screenings every 6 months or every year–whichever we’d be most comfortable with. “Surveillance is not harmless,” our doctor said. “It’s anxiety inducing because you’ll always find something. It’s the same thing with surgery.”
Here are our main takeaways:
- “Are you sure we shouldn’t take the cyst and her ovary out right now?” Our doctor reassured us that, if the cyst had grown or looked unusual at all, then “we would have taken it out.” However, the cyst shrunk from 8cm to 3cm, and “it looks to be resolving, and it’s not complex.” She also said: “If you came to me and said to me, ‘I need to have my ovaries out, I need to have my fallopian tubes out, because I can’t deal with this anxiety anymore,” then we’d have a real conversation.” So, right now, her ovaries stay!
- She recommended baseline ovarian cancer screening for us every six months to a year, whatever we’re most comfortable with. That means CA-125 blood tests, physical exams, and pelvic ultrasounds for both of us every six months to every year.
- She recommended removal of both of our ovaries and/or fallopian tubes at age 39. This is 10 years before our grandmother’s diagnosis with ovarian cancer at 49.
- “I do think that watching you carefully makes sense.” 1 in 8 women get a breast cancer, and 1 in 80 get ovarian cancer. But women physiologically produce cysts that can resolve on their own every month, so every time they do ultrasounds they’re going to find something. She said: “Surveillance in non-high risk patients has no role. Surveillance in BRCA mutation patients makes a lot of sense. And then there are people in between, and their surveillance falls somewhere in between.” We are in between, and are figuring out a plan that works for us as we go!
So we both get to join the ovarian cancer “previvor” group at Mayo Clinic, and we both have seven more years before menopause! (Well, I guess for my sister, it’s going to be her second time through menopause, because her first round of chemotherapy forced her into menopause for a bit.) Woohoo!!!
Corneal cysts are stable / getting mildly better!
Both of the eye doctors my sister has been seeing–one here in the Twin Cities, and one at Mayo Clinic in Rochester–agree that her corneal cysts are “about the same” and perhaps even “marginally better” than her first visit(s) to each of them in September 2020! This is fantastic news because it means she can keep going with her chemotherapy and Tamoxifen regimen, which is what she wanted to do all along!
One new thing we figured out is that, based on some scholarly literature that my sister’s Mayo Clinic eye doctor found a couple of weeks ago, there is some academic evidence that her corneal cysts could be a result of T-DM1 instead of Tamoxifen. That’s because T-DM1 and other similar newer chemotherapy drugs have been proven to cause some eye problems, and some newer chemotherapy drugs actually require regular eye exams along with their regular distribution.
The corneal cysts could also be a combination of both T-DM1 and Tamoxifen. In any case, her Mayo doctor in particular is optimistic the cysts will get better starting in February, when her infusions of T-DM1 are over; and he’s even more confident that it will reverse after she stops Tamoxifen. He will keep watching her every 3 months anyway!
If for some reason the corneal cysts don’t clear up at the end of treatment, there are a couple of options, one of which is to do a surgical procedure called “PTK” where the eye doctor would scrape corneal cysts off with a laser if needed. But that procedure would be painful, and the days following surgery are uncomfortable. Also, the eye doctor in the city said that PTK procedure can be difficult because it can have “unpredictable results” and there’s a chance it would cause scar tissue and actually make the condition worse than it was before as a result. But hopefully we won’t even need to consider that because every research article the eye doctors have seen suggests the cysts will clear up because her cysts are on the exterior layer of her cornea–if they were on the interior, her doctors would be more concerned.
To reiterate: My twin sister’s oncology team and the chair of Mayo’s research in the eye clinic have never seen a patient with corneal cysts as a result of Tamoxifen. She is literally “Patient Zero!” We’re just glad she can still see at least marginally!
Dermatologist checkup
At my twin sister’s gynecology appointment / baseline ovarian cancer screening appointment a few months ago, her gynecologist saw a “suspicious spot” on my twin sister’s back. So she made a dermatology appointment to get it checked out (pictured above). He said the spot on her back is “mildly atypical,” and should be removed to be tested to ensure it’s not cancer. He offered to do it in his office that day, but also said there was no rush, and that he’d be happy to wait until her chemotherapy regimen is over in February 2021. That way, her body won’t have to go through a procedure however small it is in addition to the chemo she’s already enduring.
So she made an appointment for Monday, March 8th, to get it removed and tested to see if it’s skin cancer but he’s optimistic it’s nothing to worry about!
“Congratulations on almost being done with chemo!,” he said as he left. “That’s an impressive feat. Keep me posted on how it all goes and I’ll see you when it’s all over!”
My sister smiled. 🙂
Celebrating one year cancer free!
Last week was my one-year-anniversary of waking up from surgery cancer free and being discharged from the hospital on my 31st birthday! In some ways I can’t believe it’s only been a year since my surgery. In other ways it feels like it’s been 10 years. I have my official one-year-follow-up appointment on December 18th, so stay tuned for a report after that from my plastic surgeon and primary breast clinic doctor on how I’m doing one year in to survivorship!
Next steps
Sometimes I wonder what my 18-year-old self would think if I got a glimpse of the future and saw my life now. I think there’s a reason God doesn’t reveal the future to us. It’s because He knows we wouldn’t be able to handle it. But He gives us enough strength for each day and that’s enough for me!!!
At Bible study a few weeks ago, we started going through the Book of James. The first chapter is all about trusting God in the midst of suffering and trials.
I said that sometimes it’s difficult for me to be grateful for things like going through breast cancer. In response, a woman in my study asked me:
“If you hadn’t been diagnosed with breast cancer, would your sister have gotten screened?”
We all turned to my sister, who said, “No.”
“See! So you can be grateful, because if you were never diagnosed with breast cancer, you might not have a sister anymore!,” the woman said.
Which is very true. That moment reminded me how easy it is to forget God’s goodness and mercy, and how important it is for us to always desire to stay in the center of God’s will for our lives. Even if it’s in the middle of a fiery furnace, like Shadrach, Meshach, and Abednego in Daniel 3.
Another lesson learned during that Bible study is that, throughout life, God will very likely give us more than we can handle more than once. But I’m learning to thank God for even that. Because nothing is impossible with or too hard for God.
Here are the appointments coming up in the not-too-distant future!:
- Friday, December 18th: My one-year follow-up appointment with my plastic surgery team and primary breast clinic doctor at Mayo Clinic Rochester!
- Friday, December 18th: My twin sister’s 11th infusion of T-DM1 and follow-up with plastic surgery team at Mayo Clinic Rochester!
- Friday, January 8th: My twin sister’s 12th infusion of T-DM1 at Mayo Clinic Rochester
- Friday, January 29th: My twin sister’s 13th infusion of T-DM1 at Mayo Clinic Rochester
- Friday, February 19th: MY TWIN SISTER’S LAST INFUSION OF T-DM1 at Mayo Clinic Rochester!!!!!!! YAY!!!!!!!!!!
- Monday, March 8th: Dermatology appointment to remove and test a “mildly atypical” spot on her back (the dermatologist doesn’t think it’s cancer but just wants to make sure!)
Thank you so much for your continued prayers for my twin sister’s health and healing!! God is good!!!
This blog post is the 33rd in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 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.