My Breast Cancer Journey Part 17: 'Pigmented Purpura,' 'Breast Implant Illness,' Ovarian Cancer Screening & My Sister's Fifth Chemotherapy Infusion

My Breast Cancer Journey Part 17: 'Pigmented Purpura,' 'Breast Implant Illness,' Ovarian Cancer Screening & My Sister's Fifth Chemotherapy Infusion

This blog post is the seventeenth 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 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; the eighth post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic; the ninth post is about preparing for my twin sister's chemotherapy appointments, including details about her egg banking procedure in the city; the tenth post is a summary of my sister's ovarian hyperstimulation syndrome and visit to the emergency room; the eleventh 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 Rochesterthe twelfth post is about my twin sister's first chemotherapy infusion at Mayo Clinic; the thirteenth post is about foobs, photo shoots and nipple tattoos (my plastic / reconstructive surgery plan); the fourteenth post is a recap of my successful double mastectomy and immediate direct-to-implant reconstruction operation; the fifteenth post is about my surgical recovery and day full of follow-up appointments at Mayo Clinic in Rochester; and the sixteenth post is about my one-month-post-surgical-follow-up appointment and preventative baseline ovarian cancer screenings at Mayo Clinic. To keep tabs on new posts, sign up for the "A Daily Miracle" email list at this link.

"It's like your adrenaline ran out and now you're running on fumes." "Congratulations on beating cancer!" "Is this rash related to my implants?" "Should I get my ovaries out now?" "What if I have breast implant illness?"

This past week, we went back to Mayo Clinic in Rochester, Minnesota for two reasons: First, for an appointment I had scheduled with a gynecologic oncologist to discuss the results of my baseline preventative ovarian cancer screenings that I got started with last month--a CA-125 blood test and an ultrasound--and, second, to be there for my twin sister, who had her fifth of six chemotherapy infusions at Mayo Clinic on Friday! She has one chemotherapy infusion left on February 21st, and surgery scheduled for March 20th. The doctors say her tumor is shrinking and we are praying for a "complete pathological response" at the time of surgery, which means the chemo was totally effective and her tumor would be completely gone!

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Here we are heading into a prayer meeting at my twin sister's home church! The pastoral team offered to pray over her for strength and healing. Prayer is such a blessing :)

Prayer is a blessing

We had an amazing opportunity to go to my sister's home church last week, before my sister's final chemo infusion, where the pastoral staff had offered to pray over her. She and her husband help lead a marriage ministry there, and the pastor cited James 5 as an opportunity to "call the elders of the church to pray over them...in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise them up."

My mom and baby sister went along because my sister's husband had to work and we figured she might like a chauffeur. It ended up being a therapeutic meeting for all of us--as soon as my twin sister started telling our story to the 20+ pastors and staff in the room, my mom started crying. So did my baby sister. The pastor asked her to share a bit of her story of involvement with the church (my sister and her husband are both members and help lead the marriage ministry) and he asked her to tell a bit of her story of what brought her there for prayer. After she told the story of how the two of us were diagnosed with breast cancer within three weeks of each other last fall, the pastor asked how they could be praying specifically for her at this time.

My sister paused.

“For strength, because the treatments have been very hard and they’re getting harder...” then her voice trailed off and she started to cry.

Hearing my sister admit out loud how hard chemo has been for her was super hard for me to hear because I've seen how hard it has been especially this past time around. She's lost some hair, she's been nauseous and super tired, and she started getting nosebleeds almost every day. She went back to work four days after her fourth chemotherapy infusion but had to go home a half hour after she arrived because she was too sick to work. "I wasn't ready to go back to work so my body was like, 'nope!,'" she said. Her coworkers sent her a bouquet of flowers. Her boss called and said, "Sorry you feel like s**t."

“Sorry...” she said as she looked around in her purse for Kleenex. As she reached down three people got up from their chairs simultaneously and ran to opposite corners of the room to look for boxes of Kleenex. At that time I noticed there were several people crying in the room, including my mom and baby sister right next to me who had been crying for several minutes already, at least since my sister had started talking. We were going to need lots of Kleenex.

As my sister rifled around in her purse for Kleenex,  I jumped in and said, “She’s a lawyer and loves her job, and she’s hardly taken a day off—she’s been at work 3 or 4 days after her chemo infusions and it’s been amazing to see her desire to do that because her prayer has been that she’d be a vessel of the Holy Spirit and an encouragement to everyone around her. Her prayer has been to show God’s strength in her weakness.” 

Everyone around the room smiled and nodded, then the pastors thanked my sister for sharing and asked if she wanted to sit in a chair in the middle of the room so everyone could gather around her. They laid hands on her and prayed for 15 minutes:

“Lord, give her the strength to share her story with people around her who might be far from you, with people who might know you already, with people who don’t know you at all. We pray her story would be an encouragement to them, that it might bring some people to faith in you, and that it would strengthen the faith of those who know you. And may it be a testament of your strength and grace in her life.”

“In Jesus's name we command the cancer to be gone from her body, that at the time of surgery the doctors would find no cancer.”

“Thank you for the courage she showed in wanting to come here today, and we pray for even more courage as she faces her treatments and surgery ahead.”

“Thank you for her community and for her family, especially for her mom and two sisters who are here today, showing the strength of the family of Christ, your family.” 

“Lord Jesus, you said that we would do even greater things than you did, so we pray in your name that she would be cured of her cancer.”

“Please give her husband wisdom that only you can give, even wisdom in the little things like knowing how to best love and support her every day through this trying season. We also pray that you would send people alongside him to help encourage him on this journey, that he wouldn’t feel alone.”

“Please provide protection for their marriage, even in routine everyday things like traffic and weather—please keep the roads clear to and from work and to and from her treatments. Keep them safe.” 

Praise God for the prayers of righteous believers!

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Two thumbs up from my twin sister for a successful fifth chemotherapy infusion! She only has one more to go before surgery!

My sister's fifth chemotherapy infusion was a success! And Drift Dough is amazing.

The featured photo at the top of this post is of our entire family at my sister's fifth chemotherapy infusion. Her husband couldn't come because he came down with the flu and had quarantined himself! We all took turns sitting with her during her infusion, and my baby sister and I picked up doughnuts from Drift Dough in Rochester to share with everyone on the chemotherapy floor. My sister didn't have any reactions to the drugs (YAY!), we shared delicious donuts with everyone on the chemo floor (YAY!), and I had a great appointment with a gynecological oncologist at Mayo. All in all, it was a great day!

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These are the three kinds of gluten free donuts they had at Drift Dough Friday and they were all delicious!

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My husband and I at Mayo Clinic for a second opinion on the skin rash diagnosis I got from my dermatologist in the city: It was confirmed as "pigmented purpura" (what even is that?!)

"I have a rash: Is it melanoma?" "No, it's pigmented purpura." "Do I have breast implant illness?" "Probably not."

It's officially been 9 weeks since my double mastectomy with immediate reconstruction at Mayo Clinic's Rochester Methodist Hospital. Initially after surgery, I felt great--not too tired, not in too much pain. The drugs and pain meds did their job. :) Since my one-month checkup, I've developed a suspicious rash all over my legs and have been hit with a significant amount of fatigue. I started sleeping 12 hours per night and want to take naps every day. I felt like I was wandering around in a brain fog. I started doing some research about "skin rash" and "fatigue" and "breast reconstruction," and came up with some major search results about "breast implant illness." So naturally I started wondering if I had breast implant illness. I ultimately decided I probably don't have breast implant illness because I had surgery a mere 9 weeks ago and am probably still recovering from that, but here's what I found out about breast implant illness anyway!

Breast implant illness is a condition characterized by fatigue, skin rash, brain fog, and other problems that women connect back to their breast implants and reconstructive implants. There is a website dedicated to "Healing Breast Implant Illness," there are tens of thousands of women who claim to have breast implant illness in a private Facebook group called "Breast Implant Illness and Healing by Nicole," and there is a Facebook page dedicated to sharing updates called "Breast Implant Victim Advocacy."

In its most severe form, textured silicone implants have been tied back to "Breast Implant Associated Anaplastic Large Cell Lymphoma (BIA-ALCL)"--which is "a rare and highly treatable type of lymphoma that can develop around breast implants." According to the U.S. Food and Drug Administration, "BIA-ALCL is found in the scar tissue and fluid near the implant and the symptoms" and the main symptoms of BIA-ALCL are "persistent swelling, presence of a mass or pain in the area of the breast implant." (Cue my potentially paranoid and irrational phobia of developing BIA-ALCL in the scar tissue that I have built up below my implant on my right side.) 

Armed with this knowledge, I made an appointment with a dermatologist in the city to check out the rash on my legs. I told him all about my breast cancer and reconstruction, and asked if the rash was connected to my implants.

"Do you think I have breast implant illness?" I asked.

"Probably not," he said.

"Could it be melanoma?" I asked.

"Not likely," he said.

What a relief!, I thought.

He looked at my rash and said it looked a lot like pigmented purpura. He took a biopsy. The results came back as "pigmented purpura," defined as "a chronic condition characterized by reddish-brown skin lesions caused by leaky capillaries." The kicker is, there's no known cause of pigmented purpura, and no known treatment to cure it. In the words of my doctor: "It might go away and never come back. It might come and go for the rest of your life. Or it might get worse and stay like that for the rest of your life." There's a possibility it could be super itchy, but mine is not--which is a great thing: At least it doesn't itch.

To make sure everyone was on the same page, I messaged my plastic surgeon at Mayo Clinic about my rash and concerns, too, and she said she'd be happy to set me up with a dermatologist at Mayo Clinic for a second opinion. I went there for a second opinion, and they agreed it was pigmented purpura, it wasn't melanoma, and was likely unrelated to my reconstructive implants.

They prescribed me with some topical cream that I was told "might work, and it might not." According to my doctors, the cream sometimes gets rid of the itching, but because I don't have itching, that doesn't really matter, but it doesn't always work on getting rid of the rash. One of my doctors said: "Let us know if it works! We're still trying to figure this out."

So, I have a suspicious rash with no known cause or treatment along with a bad case of fatigue, but it will all hopefully go away with time. At least, that's what we're praying for!

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Like I said earlier, one of the highlights of the day in Rochester was Drift Dough's gluten free donuts. They are AMAZING! Here my baby sister and I are, ready to go in and pick some up some donuts before our arrival at Mayo!

My preventative baseline ovarian cancer screening meeting

Even though I tested negative for BRCA in addition to 17 other breast- and ovarian-cancer genes last month--which means technically there is no genetic rationale for my coming down with breast cancer at the young age of 30 and I have no known genetic link to any other cancers including ovarian cancer--my breast clinic doctor recommended I get checked out at the ovarian clinic due to the fact my maternal grandmother passed away at the age of 50 from ovarian cancer. I found out some very interesting things about my ovarian cancer risk, including the following:

I’m "moderate to low risk" for ovarian cancer. Even though my grandmother died of ovarian cancer at age 50, I’m not high risk because 1) I don’t have an immediate family member with ovarian cancer and 2) I don’t have a BRCA gene mutation. My mom could have developed ovarian cancer, but we will never know because she had her ovaries out at 44, after she was done having kids and 3 years after her double mastectomy. The doctor said I’m at higher risk for ovarian cancer than the general population (general population risk is just over 1%), but am at a potentially lower risk than the 20-40% risk that BRCA-positive women have. The earliest BRCA-positive women have ovarian cancer is typically age 40. This wasn’t a huge comfort to me given the fact I got breast cancer way before the “typical” person but was still good to know.

Pregnancy and birth control pills decrease ovarian cancer risk. Frequent ovulation increases ovarian cancer risk; regulation via birth control pills decreases ovarian cancer risk. Pregnancy decreases ovarian cancer risk too, because when you're pregnant, you don't ovulate. 

Getting my ovaries out right now is "not an option." The gynecologic oncologist I met with told me that she wouldn’t even give me the option of having my ovaries out right now. "There’s no reason for that at this point in time," she said. "After you have all of your kids we can talk again, 5 to 10 years down the road. Obviously, you can always feel free to come back and talk to us anytime."

Ovarian cancer might originate in the Fallopian tubes, not the ovaries. One interesting thing we learned is that they are doing research and trials all the time to try to figure out what causes ovarian cancer—for example, researchers learned recently that the Fallopian tubes might be more to blame for ovarian cancer than the ovaries themselves.

There is no "great" screening for ovarian cancer yet. The tests they have to discover ovarian cancer are less than perfect—the CA-125 blood test isn’t always accurate, and the transvaginal ultrasounds don’t always pick up ovarian cancer or could create false positives or find cysts that need to be examined but aren’t actually cancerous. They are doing clinical trials all the time to figure out more effective screenings for ovarian cancer but for now it’s the annual physical pelvic exam which I’ve already been doing and will continue doing. 

I need annual physical exams. "Make sure you go in for annual pelvic exams—even if your PAP smear is every 3 years, you’re going to need to do physical exams every year. The thing with ovarian cancer is that it can be sneaky. It could be a small, one centimeter tumor that doesn’t show up on an ultrasound then 3 months later has spread all over the abdomen. We have a high risk group we can set you up with here or you can see someone locally." I got a great local recommendation from my Mayo doctor, so I will be having annual physical exams to keep an eye on things until I have "all of my kids" 10 or so years down the road. 

"I'm entering a kind of "grey area," aren't I?" "You will worry, and that is fine to worry, but you don’t need to do anything except have kids if you want to have kids, then we can talk again in 10 years if you want," my doctor said. She also recommended I connect with a local FORCE (Facing Our Risk of Cancer Empowered) group in my area to talk through the stresses of living with a moderate to high risk of cancer. So I'll probably go to one of their meetings soon!

Various questions I had to close the appointment included:

"Will pregnancy increase my ovarian cancer risk given my breast cancer was estrogen positive?" "No," my doctor said. "Pregnancy actually decreases your ovarian cancer risk."

"Should I get pregnant now?" “If you’re financially, emotionally, and mentally ready, then there’s no physical reason not to,” she said as she looked at me, then at my husband. Then she looked back at me. “Have you had that conversation? This isn’t the first time you’ve had that conversation, is it?” 

We laughed. 

"If I have my ovaries out preventatively, can I still carry a baby?" "Yes, but you would need to do IVF to conceive if that were the case," she said.

"My twin sister got Ovarian Hyperstimulation Syndrome during her fertility treatments before chemo. How can I avoid that?" "PCOS is a definite indicator of OHSS, so you would have to be careful of the levels of trigger shots you get. But there are ways to track your hormones and estrogen levels throughout the process. OHSS does not increase your chances for ovarian cancer though. I’m a surgeon not a fertility specialist but I would say definitely check in with REI (reproductive endocrinology and infertility) about all of that."

"When and if I get my ovaries out should I consider a full hysterectomy? Why or why not?" My doctor said, when the time comes: "We could discuss having your Fallopian tubes out instead of your ovaries—we have a trial going in the US and Europe right now of BRCA positive patients who are having their Fallopian tubes removed instead of their ovaries, so we will see where that goes."

Up next: Me, trying not to worry about getting cancer again; my twin sister's last chemotherapy infusion on February 21st; my three-month plastic surgery follow-up on March 13th; and my twin sister's double mastectomy with reconstruction on March 20th! We keep remembering: God is good, all the time.

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Our view from my sister's chemotherapy room was of Rochester Methodist Hospital, where I had my surgery and my twin sister will have hers next month!

This blog post is the seventeenth 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 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; the eighth post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic; the ninth post is about preparing for my twin sister's chemotherapy appointments, including details about her egg banking procedure in the city; the tenth post is a summary of my sister's ovarian hyperstimulation syndrome and visit to the emergency room; the eleventh 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 Rochesterthe twelfth post is about my twin sister's first chemotherapy infusion at Mayo Clinic; the thirteenth post is about foobs, photo shoots and nipple tattoos (my plastic / reconstructive surgery plan); the fourteenth post is a recap of my successful double mastectomy and immediate direct-to-implant reconstruction operation; the fifteenth post is about my surgical recovery and day full of follow-up appointments at Mayo Clinic in Rochester; and the sixteenth post is about my one-month-post-surgical-follow-up appointment and preventative baseline ovarian cancer screenings at Mayo Clinic. To keep tabs on new posts, sign up for the "A Daily Miracle" email list at this link.

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