This blog post is the eleventh 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; 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 at Mayo Clinic, including details about her egg banking procedure; and the tenth post is a summary of my sister’s ovarian hyperstimulation syndrome and visit to the emergency room. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
I met with my double mastectomy surgeon yesterday to discuss my double mastectomy scheduled to occur on December 3rd. That’s the day before my 31st birthday (!). Besides that sad fact, I had an amazing appointment that reaffirmed the excellence of Mayo Clinic’s Breast Clinic in its entirety. Not only is it an amazing hospital dedicated to clinical practice AND to research, but my surgeon is the real deal. The bomb.com. Too legit to quit. The OG.
She spent over a half hour talking to me, my husband, my mom, and my baby sister about all of the questions we had, in addition to describing the double mastectomy procedure in detail. To prepare for the appointment, I have to give a shoutout to Paige More & “The Breasties” — I read their entire website to figure out what questions I should be asking about breast cancer, mastectomy, and reconstruction.
For those who don’t want to read to the bottom of this 3,500+ word blog post, here are the key takeaways from my conversation with my surgeon, primary doctor, and our most recent day trip to Rochester, Minnesota:
- I’m going in for my double mastectomy on December 3rd, which is a day before my 31st birthday. It will likely be a 3 to 5 hour procedure. Happy Birthday to Me!
- Even though I’m having a double mastectomy for DCIS on both sides of my chest, there is a 10 – 15% chance that they will open me up an find some invasive cancer. If that happens, I would need to go through chemotherapy or hormone therapy after I recover from surgery.
- I might lose some of my lymph nodes as part of this surgery which is fairly standard if they find some invasive cancer but I’d like to keep as much of my physical self as is possible if at all possible so I struck a deal with my surgeon that she would only take the lymph nodes that show potential signs of invasive cancer during a pathology test that will occur while I’m under.
- I plan to have immediate reconstruction while I’m under, but there’s always a chance something could go wrong and we’d have to do delayed reconstruction. More details TK on that.
- Forager Brewery is a must-see in Rochester–one of our Mayo Clinic nurses recommended we stop for lunch there after our appointments and they have amazing food and brews and a coffee shop inside that has GLUTEN FREE DONUTS called Drift Doughnuts!!! HELLO!!! And the gift shop is excellent as well.
In my clinical notes from my meeting with my surgeon:
In summary, this is a very pleasant 30-year-old female with bilateral, biopsy-proven DCIS of the breasts. She is determined to pursue bilateral mastectomy. We discussed several different mastectomy approaches including total mastectomy, skin-sparing mastectomy, and nipple-sparing mastectomy. At this time, she would prefer bilateral skin-sparing mastectomies. We discussed our plan regarding axillary surgery. Our plan will be to perform pre-operative sentinel node mapping. If either breast shows invasive disease on frozen pathology then we will plan to pursue sentinel node biopsy on the diseased side proceed axillary dissection as indicated.. In the event that frozen pathology is negative for malignancy, we have decided that we will not pursue sentinel lymph node biopsy. She is also interested in reconstruction and has already met with the Plastic Surgery team. She will undergo sentinel node injection on 12/02/2019. We have set a surgical date for 12/03/2019.
I am glad my doctors have identified me as a “very pleasant 30-year-old female.” Here are all the details about my double mastectomy coming up on December 3rd.
Double mastectomy vs. single mastectomy vs. lumpectomy
My surgeon made sure to let me know all of the surgical options set before me: Given my diagnosis is DCIS, now on both sides, I could have a couple of lumpectomies, or a complete double mastectomy. Lumpectomy on one side or a single mastectomy were initially options–when I was first diagnosed and only had DCIS on my left side, I was considering this–but now that I’ve been diagnosed with DCIS on my right side, too, two lumpectomies or a double mastectomy are my only real options.
“Every time I see you, something changes!,” she said. (I had seen her during my twin sister’s surgical consult a few weeks ago, back when I only had DCIS on one side of my chest.) “Now your cancer is on both sides of your chest. Are you still thinking bilateral mastectomy?”
“Yes,” I said.
“What are chances of you finding something invasive when you open me up?,” I asked.
Back when I had my MRI biopsy, I found out that there were 3 “areas of concern” in my right breast. One of my main questions that day was why they only biopsied 1 of the 3 areas of concern. Why did they only biopsy the 1.2cm spot and not the 2.7cm spot 2mm from my chest wall? I had already talked through this at length with my primary doctor who reassured me it is more than likely DCIS like the other spots but I wanted to bring it up with my surgeon, too. Mainly because I felt a minor lump by my sternum in the posterior area the MRI had identified as problematic.
“I kind of feel a lump in one of the three spots on my right side. But maybe I’m crazy?”
My doctor thought about that for a moment.
“I wouldn’t be surprised if your little toe hurt right now. But let me take a look.”
She felt around and felt the lump I was talking about. But she wasn’t concerned enough to move my surgery up to a sooner date.
“Even if this is something–which I really don’t think it is–it would be very small, and would likely be something we could treat with Tamoxifen instead of another way.”
“Another way being chemotherapy?” I asked.
“Well, yes, but I was trying to avoid using that word, given what your twin sister is going through next week,” my surgeon said, looking compassionately at my mother. “Do you know who I feel the worst for in all of this? Your mother. I can’t imagine having to watch your three daughters go through something like this.”
My mom smiled. This was very true.
“But we are so thankful for her!,” I said. “She paved the way for us in going through breast cancer 20 years ago.”
My surgeon smiled.
“Let’s take a look at this tool one of my colleagues developed,” she said while turning the computer monitor toward me.
It was a “DCIS to Invasive at Time of Surgery” calculator. My doctor was able to put the size of my cancer on my left side (3.5cm) and right side (3cm) into a calculator along with my intermediate to high nuclear grade ratings and the estrogen (ER+) and progesterone (PR+) receptors and found:
“You have a 10-15% chance of invasive cancer at time of surgery based on a DCIS risk calculator for the left and right sides.”
So, there is a 10 to 15 percent chance that I have invasive breast cancer like my twin sister. Which I’m freaking out about given the fact I feel that lump by my sternum. And also because everything that’s happened to us on this journey so far has been, basically, statistically impossible. And the fact that chemo would potentially take away my husband and my’s chances of having children naturally and I don’t know if I’d want to go through egg banking after my twin sister’s nightmarish experience with OHSS.
My doctor thought I might have invasive cancer in my right breast, lymph nodes and liver last month, so I already went through tests and found out that I didn’t (the full story of my “I might have invasive cancer, too” journey is at this link). But now I’m wondering if it’s invasive again, all because of that third spot I can feel on my own and that my surgeon felt too.
So even though an MRI, ultrasound, biopsies, and my doctors say I *probably* don’t, I still might have invasive cancer. I really don’t know. God knows! All I know is, if I have invasive breast cancer, I’ll need to do chemotherapy or hormone therapy of some kind, like Tamoxifen, after the operation. And I will find out for sure when I wake up from my double mastectomy on December 3rd!
Given this risk, my surgeon started talking about my sentinel lymph nodes.
“Do you absolutely have to take out some of my lymph nodes as part of this operation?” I asked.
“You’ll have radioactive tracers injected in your breasts the day before the operation. This is to identify whether or not any of the cancer has spread into your sentinel lymph nodes. If any of your sentinel lymph nodes–the ones right by your breast tissue–light up, I will take them. If any of them are borderline, I might take them as well. But I am able to
“Do you want to do a nipple-sparing or a skin-sparing mastectomy?,” my doctor asked.
Nipple-sparing mastectomy means taking all of the breast tissue but leaving the nipple. Skin-sparing means the nipple goes and your skin stays.
“I don’t want to save my nipple, because during my conversation with my plastic surgeon last month, technically, there is a risk of the breast cancer coming back in that tissue,” I said.
“Technically, that’s correct,” she said. “With a tumor less than 2cm in size more than 2cm away from the nipple we are comfortable doing nipple preservation. It’s something we have been doing over 10 years. But with your cancer and the way it’s bouncing around to three spots on the right side, I’m not as sure.”
So I’m not preserving my nipples. Which was something my husband and I had talked about at length before going into this appointment so it wasn’t a surprise. It’s just that now it’s in a contract that I signed.
“Are you okay with that?” she asked my husband.
“I’m totally on board with everything!” he said.
“You don’t want to offer to donate your nipples, do you?” she asked my husband. (My twin sister’s husband had asked her if he could donate his nipples to my twin sister at her surgical consult a few weeks ago. My surgeon brought that up again because she thought it was hilarious.)
She followed up, “Actually, please don’t offer to do that. I don’t have any idea how to do that procedure so don’t make me figure it out!”
“Am I going to lose feeling from my ribs to my collarbone?,” I asked.
“Your chest will be numb from here (motioning to just below my chest) to here (up to my collarbone). But you should regain sensation over time around here (motioning toward my collarbone),” she said.
“Have you heard of the technology called Resensation that can help restore sensation during or after a mastectomy?,” I asked. (It’s a new technique where nerves from the chest are reconnected with nerve grafts to nerves in the mastectomy skin.)
She answered: “We are keeping an eye on that research area. We just haven’t implemented it yet because we don’t want to put people in surgery for 12 hours at a time.”
So, nerve grafting is a time-intensive procedure at present that is not an option for me which I am totally fine with (more details on my plastic surgery blog post to come).
“But surgery is the day before my 31st birthday!”
I’m going in for my double mastectomy on December 3rd, which is a day before my 31st birthday. I told my surgeon that, if my surgery is set for December 3rd, that she’d need to sing me “Happy Birthday” in the hospital because it’s my birthday on December 4th.
“Oh, no,” she said. “No, no, I’m not doing that. You don’t want me to do that. Do we have any other operating dates?? Just kidding, maybe we can figure something out. You just don’t want me singing to you. My husband plays guitar and sings, two of my kids are in choir, but I don’t sing. Also, none of my kids want to go into medicine. I’ve failed!”
“But I’m serious,” I said.
She laughed. Her nurse laughed. Everybody laughed.
“You know, she is a journalist, so she’d probably video tape it,” my baby sister said.
“I’m making a note of this!” her nurse said.
I sometimes wonder what our consults sound like from the hallway of Mayo Clinic’s Breast Clinic. With an average of 5 attendees per appointment, we laugh more often than your average breast cancer consult crew does, I imagine! It’s a gift to be able to do that with our doctors. Being able to laugh in the midst of all of this is an amazing encouragement and blessing. As one of my nurses said today: “This all really sucks, but your outlook seems overwhelmingly positive.” And I plan to always have it be that way! Jesus wins in the end, after all.
Then my surgeon changed the subject.
“What is your plan for children?,” she asked.
“Well, we would like to have them, but because my cancer is estrogen positive, if I get pregnant and my estrogen levels increase a bunch due to that, will that increase the likelihood of my cancer coming back?”
She paused thoughtfully for a moment, then said: “Live your life. Especially once this breast tissue is gone. I’m a big advocate of eat what you want to eat. Drink what you want to drink. In moderation, of course! And, do what you want to do. Don’t let this hold you back from having a family.”
Duly noted!
“Speaking of family, I still can’t believe this is happening to all of you,” my surgeon said. “There is definitely a story here.”
Health care directive
“Who’s in charge of making decisions while you’re in surgery?” my surgeon asked.
“My husband,” I said.
“Okay,” she said. “So do we have permission to give you a blood transfusion if you need it, to keep you alive?”
“Yes,” I said. My husband nodded.
“We likely won’t need to do that. But it’s nice to have permission,” she said.
Then my surgeon asked my husband: “And how about with all the rest of this? Are you okay with all of these things we’re doing?”
“Yes!,” he said. “I’m in full support of all of this.”
My surgeon gave us all big hugs, said she’d see us on December 3rd before surgery, and went on her way.
Then I signed the consent forms and met with a nurse about surgery prep. She told me I would need to fast from food from 10pm the night before surgery until the operation, but that I could have jello, clear liquids, water, coffee, and juice until 2 hours before checkin.
“You can have coffee until 2 hours before checkin, so, are you a coffee drinker?,” she asked.
“YES!” I said.
“Then I would recommend if your checkin is 6am that you get up at 4am and have that cup of coffee,” she said.
Yasssssssssss!
Followup with my primary care doctor
After I met with my surgeon, my primary doctor (aka, the best doctor in the universe) came in to follow up on the meetings I’d had with my double mastectomy surgeon and plastic surgeon (a blog post about the plastic surgeon appointment will come soon). She asked if I had any questions after meeting with my surgeon. I had some questions. They are in bold below.
“Okay, so looking forward to after surgery, I’ll have checkups every 6 months to a year, then I’m wondering about family planning. What should my timeline be: Recovery from surgery, BRCA screening, ovarian cancer screening, pregnancy? In what order? Or, should I never get pregnant due to the possibility of my estrogen positive cancer causing cancer again when I get pregnant?” I asked.
She said: “I would say you should plan to get pregnant. As long as you make sure to constantly check for pea-sized spots and do regular checkups you should be totally fine, especially when your breast tissue is gone, except for a microscopic amount after surgery. With regard to timeline, I would recommend you figure out all of your risks first and then start trying. So BRCA testing first to figure out what ovarian cancer risk you have, followed by ovarian cancer screening, then family planning.”
My doctor shared that my fears were justified anecdotally: She has a colleague in her 30s who got breast cancer while she was pregnant with her second child. The cancer had also spread to her colon. She is in treatment now. Our doctor also has seen patients as young as 18 years old with breast cancer.
“We see a lot of young people here with breast cancer,” she said.
“Maybe that’s because you’re the best,” my baby sister said.
“What about genetic testing? I’m still a bit hesitant due to insurance stuff but I think we might be on board with doing this now to figure out what’s going on here. Can we do a family consult of some kind?,” I asked.
“Honestly, your mom is the first one who could be tested–you all might not need to be if she is negative. If the mom in a family gets tested and is negative, the children likely aren’t positive unless the father is a carrier of BRCA. Men can be carriers of the gene as well. But those are very rare cases. Also, if your mom tests positive, you could be negative. So it’s possible for a mom to get breast cancer but be BRCA negative and it’s possible for a mom to test BRCA positive and for the children to be BRCA negative.”
And, with regard to the insurance question: “To be honest, now that you’ve been diagnosed with breast cancer, testing for BRCA isn’t a big deal at all.”
Oh. Right. My cancer doesn’t look too good as far as insurance is concerned. Oh well!
So we are likely going to sign up for a “family consult” for genetic testing at Mayo Clinic as soon as I recover from surgery.
Surgery aftercare
I’m super excited to have my 31st birthday in a hospital recovery room!!!! I mean, like my doctor said, I might rather be doing something else on my birthday, but at least the hope is I’ll wake up cancer free!
Questions I forgot to ask my doctors today that I’ll be asking the day of my operation or shortly after include: Can BRCA testing tell if my twin sister and I are identical twins? (we never found out and they couldn’t tell when we were born); How many patients do you all have at one time?; How will a double mastectomy change my golf swing?; and will I ever be able to do the worm or break dance again?
My next post will provide details about my reconstructive surgery which is set to also occur while I’m under on December 3rd. I’m a candidate for “direct-to-implant” reconstruction which means the double mastectomy and reconstruction would occur over the same 3-5 hour block of time. Stay tuned!
This blog post is the eleventh 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; 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 at Mayo Clinic, including details about her egg banking procedure; and the tenth post is a summary of my sister’s ovarian hyperstimulation syndrome and visit to the emergency room. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
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