This blog post is the 31st 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.
It’s mid-October, and we are halfway through Breast Cancer Awareness Month!!! Here are a few highlights for us at this moment in time!:
- Our dad has raised over $4,000 for the American Cancer Society’s “Real Men Wear Pink” Breast Cancer Awareness Campaign!! Our Dad was recently invited to take part in a fundraising campaign called “Real Men Wear Pink,” backed by the American Cancer Society. You can donate to support cancer research, treatments, and support for cancer patients on his fundraising page at this link!!! His goal was to raise $2,500 for ACS during the month of October, and he has already beat that goal, so the American Cancer Society increased his goal to $6,000! My husband, Chris Steinke, hosted a Facebook Live music event featuring breast cancer awareness on October 1st, and you can watch the replay at this link. He will go live again on Friday, October 23rd, at 7pm CST to play some more music and to raise some more awareness for breast cancer! Join us on his Facebook page!!
- My twin sister is over halfway done with her post-operative chemotherapy regimen of T-DM1! Last October, we were just getting started with all of this breast cancer diagnosis and treatment stuff. It’s hard to believe all that can happen in a year’s time! She only has 6 infusions of chemotherapy left–and we hope and pray this is the last time she ever has to do chemotherapy EVER!!! 😀
- My twin sister started her baseline ovarian cancer screening, and is waiting for results/interpretation from her gynecologist: My baseline ovarian cancer screening at Mayo Clinic Rochester in January 2020 confirmed a diagnosis of polycystic ovarian syndrome (PCOS), but my markers for ovarian cancer (a CA-125 blood test and an ultrasound) weren’t suspicious at all, Praise God! My twin sister is currently awaiting interpretation from her gynecologist in the city of her CA-125 levels and pelvic ultrasound imaging. We are praying there is nothing suspicious to report!
- My twin sister’s microcystic edema isn’t getting worse, but it isn’t getting better, either! Prayers are immensely appreciated for the cysts on her corneas–that are likely caused by her daily intake of Tamoxifen and exacerbated by eye dryness caused by her T-DM1 infusions–to heal sooner rather than later!!! They “ebb and flow” in severity after every one of her T-DM1 infusions, which occur every 3 weeks.
My twin sister’s 8th infusion of T-DM1
My twin sister was a champ and knocked out her 8th infusion of T-DM1 in record time! Her husband, Paul, is an operations manager at Amazon, and recently moved over to overnight shifts. He insisted on driving her to her appointment even though he’d just finished an overnight shift with no break in between! They are the cutest couple ever!!! They even wore matching superhero masks, woohoo!!
While they were down in Rochester,
Alternative options to Tamoxifen / T-DM1: an “aromatase inhibitor”
As mentioned previously, my twin sister’s corneal cysts are likely caused by her daily intake of Tamoxifen and exacerbated by eye dryness caused by her T-DM1 infusions. Her eye doctors are hopeful this is a reversible trend that will go away when she’s done with Tamoxifen in 4 years, but there’s a small possibility it isn’t reversible. God is good and will be with us either way! My twin sister brought this up with her oncology team at Mayo Clinic, who brought up one alternative option to Tamoxifen: an “aromatase inhibitor” (AI).
Unfortunately, an aromatase inhibitor, aka the one alternative to Tamoxifen, is reserved for postmenopausal women. My sister is only 31, and is definitely premenopausal and plans to have children this decade!, so, in order for her to switch to the Tamoxifen alternative / “aromatase inhibitor,” they would have to shut her ovaries down with a Lupron shot every 30 days, which would basically send her into menopause every 30 days (making her “postmenopausal”).
When ovaries are shut down, they don’t produce estrogen, and the purpose of the AI would be to stop my sister’s testosterone from converting into estrogen, thus starving any breast cancer cells of their food (estrogen). Tamoxifen, on the other hand, simply blocks estrogen from binding to any breast cancer cell (also starving it of its food!) The main side effects of AI would be related to menopause–the member of her oncology team she talked with has never seen eye issues on an aromatase inhibitor. The member of her oncology team she talked with has seen the AI to be more effective in preventing recurrence than Tamoxifen in some cases, but is going to ask the lead oncologist for his thoughts and recommendations because the whole team doesn’t want my sister’s eye issues to keep affecting her life! My sister has a video appointment set up with her oncologist this Friday 10/23.
Taking all of this into consideration, there would also be a risk (again, like when she started neoadjuvant chemotherapy), that her ovaries wouldn’t wake up from being shut down, but she is optimistic they would wake up because they woke up after chemo, just last month! :)) She and her husband are currently praying about what to do–if she should stay on the Tamoxifen that is likely causing her corneal cysts for another 4 years, or if she should go down the path of monthly Lupron shots and a daily aromatase inhibitor, which also may have its own share of side effects.
Prayers are appreciated for wisdom and discernment for them as they navigate this new decision with the help of her oncologist during a virtual video appointment scheduled for this Friday 10/23!
Here is my twin sister getting all checked in for her annual gynecology exam and baseline ovarian cancer screening appointment!
My twin sister’s baseline ovarian cancer screening and annual gynecology exam
We love our gynecologist in the city! She was trained at Mayo Clinic in Rochester and was referred to us by a specialist at Mayo Clinic Rochester as specializing in high risk cancer patients in addition to pregnancy and childbirth. She takes lots of time with us and all three of us girls (including our baby sister, who is also high risk for breast and ovarian cancer). We are all seeing her now in hopes she’ll deliver all of our babies! 🙂
I accompanied my twin sister to her annual gynecology appointment where we discussed 1) my twin sister’s ovaries waking back up after her six infusions of TCHP chemotherapy; 2) the 28 eggs she has in a freezer after going through an egg retrieval procedure and coming down with ovarian hyperstimulation syndrome (OHSS) last fall; 3) her general well-being; 4) ovarian cancer baseline screening.
Our gynecologist was thrilled that my twin sister’s cycle came back last month, because TCHP forced my twin sister into menopause and put her ovaries to sleep. It’s never a guarantee that chemotherapy patients’ ovaries will wake back up, but my sister’s did!, which is a huge praise! Even though her ovaries are awake, birth control is of the utmost importance, because getting pregnant on chemo is not something anyone should do.
Our gynecologist was very excited also that my twin sister has 28 eggs in a freezer in the city. After everything she’s been through, our prayer has been that she’d be able to carry babies with IVF at the end of all of this. She’ll have to take a “timed break” from Tamoxifen to do so, or perhaps try to get pregnant at the end of this 5-year Tamoxifen window, but either way, we and her gynecologist are optimistic!
“Do you ever work with cancer patients trying to get pregnant on a timed break off of Tamoxifen?,” my sister asked her.
Without hesitation, our gynecologist responded: “Yes! I have one patient right now who is on a timed break. She is currently 30 weeks pregnant!”
My sister beamed. So did our doctor. 🙂
During her examination, our doctor said my twin sister looked healthy as can be inside and out, especially after everything she’s been through.
We then went on to discussion of my twin sister’s baseline ovarian cancer screening, which involves a CA-125 blood test and a pelvic ultrasound.
“Ovarian cancer screening isn’t great,” our gynecologist told us. “We are able to do a CA-125 blood test plus a pelvic ultrasound, but it’s not great at detecting ovarian cancers. Even if you get these annually or even every six months, ovarian cancer is likely to pop up in between exams–right now, 80% of ovarian cancers are found on physical exam or when symptoms are exhibited. But we’re going to screen you this way anyway. If we see an abnormal cyst on either of your ovaries or anything suspicious going on, we are going to look into it and, if necessary, go after your ovaries.”
This was a sobering thought. Only 20% of ovarian cancers are detectable with a CA-125 blood test and ultrasound. Yikes! Not to mention, our gynecologist told us that CA-125 tests paired with pelvic ultrasounds sometimes create false-positives and ultimately don’t ultimately decrease death rates from ovarian cancer (a statement supported by Mayo Clinic research). This is because ovarian cancer is “sneaky”–often times when symptoms show themselves or it appears on physical exam it’s already at an advanced stage which makes it harder to treat.
So basically, the best prevention we can ask for is to remove our ovaries. But even so, our gynecologist agreed with the gynecologic oncologist I saw at Mayo Clinic Rochester earlier this year: “We can discuss removing your ovaries and/or fallopian tubes after you’ve had children. Not right now.”
So we wait, and we pray–for favorable test results, effective screening, and for the ability to have children naturally before ovarian cancer becomes an issue we need to address. God is good!
My twin sister’s baseline ovarian cancer screening results
My twin sister’s CA-125 levels are ready for interpretation in her patient portal, and her twin sister’s pelvic ultrasound was last Wednesday and results are forthcoming. Paired with the CA-125 results we eagerly anticipate some answers about what it all means!
Next steps
My twin sister made a joke recently that all she does is go to doctor’s appointments, which isn’t too far from the truth! We know she’s in good hands which is great, but it is a lot of mental and emotional energy to have to ramp up for all of these visits! Here are all of the ones she has planned for the next couple of months:
- Baseline ovarian screening results are to come back / be interpreted by her gynecologist this week sometime;
- She has a virtual video appointment with her oncologist on Friday about potentially starting an aromatase inhibitor instead of Tamoxifen;
- Her 9th infusion of T-DM1 is scheduled for Friday, November 6th; her 10th infusion of T-DM1 is scheduled for Friday, November 27th, or Black Friday / the day after Thanksgiving!; and her 11th infusion of T-DM1 is scheduled for Friday, December 18th, the same day my annual follow-up appointment with my Mayo Clinic Breast Clinic doctors is scheduled for!;
- She is also scheduled to follow up with her eye doctors in the city and at Mayo Clinic over the next couple of months in hopes her microcystic edema improves thanks to some eye drops she’s on.
Thank you for your continued prayers for her health and healing! God is good!!!!
This blog post is the 31st 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.