My Breast Cancer Journey Part 32: My Twin Sister’s 9th Infusion of T-DM1 & Baseline Ovarian Cancer Screening Results (prayers please!)

My Breast Cancer Journey Part 32: My Twin Sister’s 9th Infusion of T-DM1 & Baseline Ovarian Cancer Screening Results (prayers please!)
Here is my twin sister and her husband at Mayo Clinic last week where she had her consultation with a gynecological oncologist in addition to a survivorship consult at the Breast Clinic and her 9th infusion of T-DM1 / Kadcyla!

This blog post is the 32nd 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 9th infusion of T-DM1/Kadcyla at Mayo Clinic in Rochester, her corneal cysts are miraculously improving somewhat (!), and she started baseline ovarian screening at Mayo Clinic in Rochester, which will continue there later this month. Here are a few highlights, praises, and new prayer requests for us at this moment in time!:

  1. Praise!: My twin sister is 64.3% of the way done with her post-operative chemotherapy regimen of T-DM1/Kadcyla! Her side effects have been minimal, her hair is growing back in!, and she only has 5 infusions of chemotherapy left! We hope and pray this is the last time she ever has to do chemotherapy EVER!!! 😀
  2. Praise!: My twin sister’s microcystic edema has improved slightly! Two weeks ago Saturday, my twin sister woke up 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 improving!!! Less than 1% of patients who take Tamoxifen end up with eye problems, and it looks like my sister is one of them! The corneal cysts she has are likely exacerbated by eye dryness caused by her T-DM1 infusions, and it’s a huge praise that she had this recent improvement! Our prayer is that they continue to improve and eventually disappear completely!
  3. Urgent prayer request!: My twin sister has a 4cm cyst on her left ovary that is “suspicious” and may need to be surgically removed in December. Please pray with us: 1) That the cyst is not cancerous; 2) That the cyst shrinks and disappears completely by her follow-up appointment / screening on Friday, November 27th, or Black Friday / the day after Thanksgiving! There is a chance that this cyst will “resolve on its own,” and that is our and the doctor’s hope! But, if it doesn’t, my twin sister will have the cyst, along with potentially her left ovary and fallopian tube as well, removed in a surgical operation and tested for ovarian cancer at Mayo Clinic Rochester in December. Thank you for your prayers!!!
  4. Praise!: Our dad raised over $10,000 for the American Cancer Society’s “Real Men Wear Pink” Breast Cancer Awareness Campaign during the month of October!! Our Dad was invited to take part in a fundraising campaign called “Real Men Wear Pink,” backed by the American Cancer Society. He had tens of people donate to support cancer research, treatments, and support for cancer patients on his fundraising page at this link, and he became the #1 fundraiser in all of Minnesota! His goal was to raise $2,500 for ACS during the month of October, and he quadrupled that goal! My husband, Chris Steinke, hosted two Facebook Live music events featuring breast cancer awareness–you can watch the replay of the first event at this link and the second one at this link
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Here is my twin sister dominating her 9th infusion of T-DM1 / Kadcyla at Mayo Clinic Rochester on the 10th floor of the Gonda Building!

My twin sister dominated her 9th infusion of T-DM1!

My twin sister is now 64.3% of the way done with her adjuvant chemotherapy regimen of T-DM1 / Kadcyla! She only has 5 infusions left and couldn’t be happier about that. We are keenly aware that chemotherapy regimens get more intense as they go along, so we cannot wait for her to be finished!

The chemotherapy floor in the Gonda Building is on floor 10, overlooking Rochester. My twin sister was thankful to have a window room–she’s always grateful to be able to look outside while having her infusions!–and last Friday she got to overlook Rochester Methodist Hospital, where we both had our double mastectomy with reconstruction surgeries last December and last March, respectively.

During my twin sister’s most recent infusion, one of her favorite chemotherapy nurses found her and stopped in to catch up and say hello!

“It’s been a long year for you!,” her favorite nurse said. “I still remember Day 1! Room 28!!”

The fact that this nurse remembered the room my twin sister was in for her first chemotherapy infusion given the fact she sees hundreds of patients per year was amazing. Then again, my twin sister’s first chemotherapy infusion was memorable for a number of reasons, not least of which was because my twin sister had a “reaction” to one of her chemotherapy drugs, Taxotere. This particular nurse was the one by my sister’s bedside the whole time, helping her back to baseline and calling in the acute chemotherapy nursing team to assist with bringing her back to stability.

Given this context, it makes sense this nurse would remember my sister! But it’s still remarkable that she cared enough to stop in and talk with my sister and her husband for a half hour even though she wasn’t the nurse assigned to her bay that day. They got to talk about life, how my sister’s treatment is going, and about my twin sister and her husband’s new puppy, Gizmo (you can follow him on Instagram @gimme_mo_gizmo)! They shared pictures and videos and had a great time chatting. My sister’s spirits were high when she got home after her appointment that day, many thanks to her talks with doctors and nurses who are so thoughtful and caring!

Godsends, truly. Mayo Clinic doctors and nurses are the best. 🙂

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My twin sister and her husband spent some quality time at Mayo Clinic Rochester last week for three appointments: A gynecological oncology consult, a survivorship consult at the Breast Clinic, and her 9th infusion of T-DM1!

My twin sister’s “Survivorship Consult” at the Mayo Clinic Breast Clinic

Right before her 9th infusion of T-DM1 last week, my twin sister was able to have a “Survivorship Consult” at the Breast Clinic. She met with an APRN who went over my twin sister’s entire breast cancer journey to date, which has been incredible. It still is hard to believe all that’s unfolded in a year’s time!

Not only was my twin sister able to have a great meeting with the APRN, have a physical exam, and be told there are zero signs of recurrence (WOOHOO!!! TAKE THAT CANCER!!!!!), but she was also able to see our primary breast clinic doctor, who I’m convinced is the best doctor in the world! When she walked in and saw my twin sister and her husband in their “Team Mayo Clinic” breast cancer tshirts, she said:

“I love your shirts, you guys!, but they don’t look like mine!,” she said. (She was commenting on the neon pink ones that we have now, in addition to the darker pink ones we ordered for our doctors and distributed before my double mastectomy operation last December.)

“We had to order more in a different color because the other ones were so popular we had to order some more!,” my sister replied.

Our doctor laughed.

They talked about my twin sister’s treatment plan, corneal cysts that only happen to less than 1% of Tamoxifen takers (“Of course that would happen to you!,” our doctor said), and our doctor’s recent breast clinic promotion (yay!).

My twin sister won’t be back at the Breast Clinic for a follow-up until 2024 because her oncology team will be in charge of her follow-up appointments until then, but our primary Breast Clinic doctor let my sister know she’d be happy to help her out with anything, anytime. Notably, our Breast Clinic doctor is the one who was able to provide my twin sister with the referral she needed to get in to see the gynecological oncologist at Mayo Clinic for a second opinion on the suspicious cyst on her left ovary.

“That’s why you all become doctors, right?? To care for patients with lots of problems like me??,” my sister joked.

Our doctor laughed.

“I’ve got to keep my eye on you!,” our doctor said.

We are thankful to have watchful eyes looking out for us and guiding us through treatment. Cancer sucks!!!! But God is still good and has been sending us amazingly caring, thoughtful, encouraging and joy-filled doctors and nurses along the way!

My whole family has been having plenty of quality time with Gizmo, my sister and her husband's new Boston Terrier puppy, while they are in Rochester for doctor's appointments! He is very cute!

My whole family has been having plenty of quality time with Gizmo, my sister and her husband’s new Boston Terrier puppy, while they are in Rochester for doctor’s appointments! He is very cute!

Ovarian cancer screening results

As I noted in my previous post, the gynecologist my sister saw in the city a few weeks ago started my twin sister’s baseline ovarian cancer screening. My twin sister’s CA-125 blood levels were normal, but unfortunately, my twin sister’s pelvic ultrasound showed a “suspicious” cyst that is 4cm wide on her left ovary.

Our gynecologist recommended a follow-up ultrasound to see if the cyst is shrinking at all, and also gave my sister and her husband the option to go straight to surgery to remove the cyst if she’d like to go that route given the fact there is a small chance given family history that it could be cancerous.

My twin sister was shocked at this news. First, she couldn’t believe she had a 4cm cyst on her left ovary that could potentially be ovarian cancer. Second, she couldn’t believe she might have to have another surgery in the same year that she had a double mastectomy with reconstruction. PLUS, she’s in the middle of chemotherapy right now!

Her doctor recognized that surgery was a big suggestion at this point in time, but given the fact my twin sister had invasive breast cancer and has a family history of both breast and ovarian cancers, our doctor said she’s treating my sister as “high risk” and the suggestions she was making wouldn’t necessarily apply to every patient who comes through her office. My sister and her husband appreciated this immensely–as I’ve mentioned previously, the fact that we both ended up with breast cancer at age 30 kind of defies all statistics and we are grateful for aggressive treatment plans.

That being said, given the seriousness of the situation, my twin sister and her husband decided to get a second opinion about the ovarian cyst at Mayo Clinic in Rochester. It was a great appointment, and here are some of the key takeaways.

I am reading a book called "Coddling of the American Mind" and I laughed when I came across this page and sent it to my sister because I said it was a good reminder that God must be preparing her for some huge task or responsibility way above and beyond our wildest imagining given all the suffering she's endured in recent months. She laughed and said it was an encouraging thought!

I am reading a book called “Coddling of the American Mind” and I laughed when I came across this page and sent it to my sister because I said it was a good reminder that God must be preparing her for some huge task or responsibility way above and beyond her wildest imagining given all the suffering she’s endured in recent months. She laughed and said it was an encouraging thought!

My twin sister’s second opinion with a gynecological oncologist at Mayo Clinic in Rochester

My twin sister contacted our primary Breast Clinic doctor at Mayo Clinic in Rochester and got a referral to see the same gynecological oncologist that saw me for a baseline ovarian cancer screening at Mayo Clinic Rochester in January 2020. Her appointment was last Thursday, and it went exceptionally well–Mayo will be taking over her case and care plan from here.

My sister went through all of the stages of ovarian cancer screening at Mayo, including analysis of her CA-125 blood test and thorough physical exams. During her appointment, my sister’s doctor showed my twin sister and her husband her ultrasound pictures, drew on them, and showed how big the cyst is–it turns out it is bigger than her left ovary (!). The doctor said it is a “simple” cyst as opposed to “complex,” as it appears 95% of cyst is fluid filled. There is “one potentially small area of complexity” because a line goes through the middle of the cyst that might potentially be complex. So, even though the cyst is “simple,” her Mayo doctor is treating it as if it were “complex.”
They do not think the cyst is from the ovarian hyperstimulation syndrome she experienced in fall 2019, but it could have happened as a result of the ovulation she experienced in September when her ovaries woke back up after being in menopause during her TCHP chemotherapy regimen. Or, there is a small possibility it could be ovarian cancer.
Bottom line from her appointment is: The cyst is “simple” rather than “complex,” which means it’s slightly concerning, but not as concerning as it could be. At this point in time, the cyst could simply be a follicle, especially with my sister’s period recently returning in September after being in menopause since the beginning of TCHP, or it could be ovarian cancer. The doctor does not know if it’s ovarian cancer or not at this point in time, and would only be able to tell with a pathology test at time of surgery if surgery becomes a need in the next month. For now, she wants to “watch it.”
From a breast cancer perspective, my twin sister’s breast cancer oncologist said that removing one or both ovaries or leaving them in won’t make any difference in chance of breast cancer recurrence / survival:
“As a person, she would benefit from keeping her ovaries as long as possible,” her breast cancer oncologist said. “From a breast cancer standpoint, I would not recommend removing her ovaries at this point in her life.”
The doctors told my twin sister there are a few reasons that would be good for my sister to keep her ovaries, most importantly being that ovaries support bone and cardiovascular heath. Also, removal of ovaries would likely change the endocrine therapy required like Tamoxifen.
However, if the ultrasound shows the cyst is still there on November 27th, the doctor would recommend having surgery and taking the cyst out. The doctor said she would NOT recommend waiting until February–aka, the end of my twin sister’s chemotherapy regimen–to remove the cyst. So we’d be looking at surgery likely in December, with a “pause” in chemotherapy for surgery. This made my sister a bit nervous, but my doctor assured her they do it “all the time.”

That said, in consultation with my twin sister’s breast cancer oncologist who called in during her appointment (the way Mayo doctors work together is amazing!), the Mayo Clinic gynecological oncologist decided to take a “wait and see” approach before proceeding with surgery.

This “wait and see” approach means that the gynecological oncologist scheduled my twin sister for a follow-up ultrasound for Friday, November 27th. Any normal cyst would have time to resolve or move toward resolving in this amount of time (6 to 8 weeks after her initial ultrasound), and her doctor is comfortable waiting until then for another imaging exam. That is our hope and prayer: that the cyst has disappeared completely and/or shrunk significantly so that surgery won’t be necessary!

Ovarian surgery options on the table

On Monday, November 30th, my twin sister has a follow-up video visit scheduled to go over results of the ultrasound and to make a decision about surgery if needed. If the cyst hasn’t shrunk significantly or disappeared, here are the three options for surgery that will be discussed on the doctor video call on Monday, November 30th:

  1. Remove the cyst by itself: This is doable, but is a challenging procedure that carries with it a small chance of the cyst rupturing and spilling into her abdomen. If there’s any ovarian cancer within the cyst, we do not want that to happen because that would mean cancer would spread through her abdomen. To potentially avoid this possibility, there is another surgical option: To remove the cyst along with her left ovary and fallopian tube.
  2. Remove the cyst along with her left ovary and fallopian tube: This would potentially decrease the chances of the cyst rupturing as it’s removed because it’s a simpler procedure. Her right ovary–which is totally healthy–would be able to compensate for the loss of the left one. So this is what she and her husband are leaning toward at this point in time.
  3. Remove the cyst along with both ovaries and fallopian tubes: At time of surgery, when the cyst and left ovary are removed, they will send both down to frozen pathology to test for ovarian cancer. If the frozen pathology comes back as ovarian cancer, they will have the option to remove the right ovary as well while they’re in there for risk reduction.
Down the road, if the cyst miraculously disappears this month and surgery does not end up happening at this point in time (prayers for that!!), the doctor said she will likely take both of my sister’s ovaries and/or Fallopian tubes out at some point, but not in the near future, and she would not recommend a full hysterectomy. Though, she would take both ovaries at some point because it’s “reasonable.”
With regard to fertility, the gynecological oncologist is encouraged by the 28 eggs that were retrieved at the fertility clinic in the city in fall 2019, which was a “great result.” She does not want my sister to go through another egg retrieval and she’s confident at least one of the 28 eggs will result in pregnancy via in-vitro fertilization (IVF) even if she loses both ovaries. That’s because there are lots of estrogen and progesterone supplements available that you have to have with IVF anyway.

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Here is my twin sister with her puppy Gizmo! He loves his mama!

Trusting God and miraculous healing from corneal cysts!

As my twin sister recently shared with our small group: “What an exercise in faith and the healing power of prayer in the past year or so! Believing a miracle can happen here! God is good!” 

We are believing with her that a miracle can happen!!! Just like healing of her corneal cysts she experienced recently, we are hoping and praying for this cyst to disappear, too!!!

At an appointment with her breast cancer oncologist last month to discuss her corneal cysts, he recommended halting Tamoxifen while she finishes her TDM1 treatments because, right now, he says that the “side effects are outweighing benefits of treatment.” Her oncologist is comfortable with the TDM1 attacking Her2+ properties of any potential cancer recurrence, because Her2+ is what can cause cancer to recur sooner and more aggressively.

His recommendation was based on the fact that Tamoxifen research is from the 1980’s and 1990’s and typically only for ER+ cancer (Her2+ was not tested for until 2004). We’ve been praying for clarity in the healing process so we are encouraged the cysts don’t appear to be getting worse week by week but rather might be improving, because my twin sister REALLY wants to continue Tamoxifen (even though it is likely causing her corneal cysts) because she wants to complete the endocrine therapy regimen she started to keep her breast cancer at bay—forever!!!!! And now it appears she might be able to do that!

She will be seeing an eye specialist at Mayo Clinic on again on November 19th, and in consultation with her breast oncologist at that appointment, they will make a decision on whether or not she should continue with or pause Tamoxifen.

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Having great friends to support, pray for, and come visit us has been such a blessing this past year, including this good friend who told us about SheFit sports bras which have changed our lives and allowed us to be as active as we were before surgery!! YAY!!!

Attitude of gratitude

As I mentioned earlier cancer sucks and this whole situation is really just unbelievable. Having great friends to support, pray for, and come visit has been such a blessing this past year, including the good friend pictured above who told us about the SheFit sports bras which have changed our lives and allowed us to be as active as we were before surgery!! YAY!!!

Sermons and messages that have been especially encouraging to us include those that address joy in the midst of suffering. A good friend sent one to us by author Max Lucado, about Jesus being with us in the middle of life’s storms (you can listen to that message by Max Lucado at this link). One of my sister’s good friends from her time as a student at the Pepperdine Caruso School of Law sent her a sermon at Elevation Church featuring Dr. Dharius Daniels recently, too, about trusting God in the midst of suffering, drawing back to the Book of Job–a man who lost everything, including his health–in the Bible. These are hard messages to hear, but so important to be reminded of God’s faithfulness in the middle of suffering and situations that we don’t understand–but God does. And He loves us in the middle of it all, too.

My twin sister was also able to attend a Bible study for alumni of the Christian Legal Society at Pepperdine Caruso School of Law a few weeks ago and was so encouraged by the 96 people on it!

Thank you for your continued prayers for my sister’s health and healing! God is good!!!!

Next steps

  • Thursday, November 19th: Appointment with Mayo Clinic eye specialists where they’ll decide to continue or temporarily halt Tamoxifen which is likely the main cause of her corneal cysts
  • Friday, November 27th: Pelvic ultrasound at Mayo Clinic to see if the ovarian cyst has shrunk or disappeared (prayers it disappears!!!)
  • Friday, November 27thHer 10th infusion of T-DM1 at Mayo Clinic Rochester!
  • Monday, November 30th: Follow-up video appointment / checkin with gynecologic oncologist to decide on whether ovarian surgery might be necessary!
  • Tuesday, December 8th: My twin sister has a dermatology appointment to check out a “suspicious” spot on her back, which our gynecologist pointed out to her last month. We are trusting this is nothing, too, but it’s better safe than sorry!!!
  • Friday, December 18th: Her 11th infusion of T-DM1 and follow-up with plastic surgery team at Mayo Clinic Rochester!
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Clinging to promises like these in Scripture about God’s faithful love for us in the midst of challenging circumstances!

 

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