My Breast Cancer Journey Part 5: My DCIS Diagnosis at Mayo Clinic and Surgery Timeline (oh, and my twin sister might have breast cancer, too)

My Breast Cancer Journey Part 5: My DCIS Diagnosis at Mayo Clinic and Surgery Timeline (oh, and my twin sister might have breast cancer, too)

This blog post is the fifth in a series about my 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; and the fourth post is about my diagnosis with "Stage 0" DCIS breast cancer. 

On September 6th, a week after my stereotactic core biopsy at Mayo Clinic's Breast Clinic, I was diagnosed with breast cancer (read about my diagnosis story at this link). I accepted the "Stage 0" DCIS diagnosis and was relieved to know anything at all--the waiting between my biopsy and the diagnosis was  terribly stressful (you can read all about my stereotactic core biopsy at this link). Once I was diagnosed, I decided it was time to start figuring some logistics out with regard to my not too distant future--I have a job with responsibilities, after all. So I set an appointment with my doctor to talk in person at Mayo Clinic on September 25th and started writing emails to my bosses that went something like this:

I hope all is well! I wanted to send you a note to follow up on our meeting earlier this week: I spoke with my doctor from Mayo Clinic this morning and unfortunately found out that I do in fact have breast cancer (at age 30 no less!). There is good news, though--it is DCIS, aka "Stage 0" breast cancer, which means it can be easily taken care of. I will be meeting with doctors and surgeons at Mayo Clinic this week to schedule a surgery for sometime this fall (hopefully toward the end of the semester :)).

I laugh a bit now at the smiley face emoji and my statement that my cancer can be "easily taken care of" with surgery--I'm not too sure "easy" is a word I'm going to be using once I go in for a double mastectomy and reconstruction at Mayo Clinic.

"WHOA," you might be thinking. "A double mastectomy? Isn't that a bit extreme? Isn't your diagnosis only Stage 0? Can't you do a lumpectomy for something like that?"

Well, I met with my doctor at Mayo Clinic last Wednesday and our conversation went something like this:

Me: "What would you do if you were in my position? A lumpectomy, single mastectomy because it's only on my left side right now, or a double mastectomy?"

Dramatic pause.

My doctor: "This is hard for me to say, but I would recommend a bilateral mastectomy. Given your family history and the fact you've already got DCIS at age 30, a double mastectomy would leave you with hardly any chance of recurrence."

Welp. There it was. My doctor's answer was consistent with her response and dialogue with me on the phone a few weeks prior. Given that I am quite literally trusting her with my life, plus she is married with three children and is also in her 30s, I knew whatever she recommended was what I was going to do. Not to mention, as my husband and I have been praying for wisdom for my decision about what kind of surgery to decide to do, 99% of the people we've talked with have recommended a double mastectomy given my family history, risk factors, etc. So, within two hours of leaving Mayo Clinic last week, I knew I would be headed into a double mastectomy with reconstruction.

my surgery schedule

But the outstanding question was: When is this all going to happen and how is this going to mess with my work and life? I'd asked my doctor about that at my appointment, too:

Me: "Okay, so how soon should this surgery happen? Selfishly, I'd love to have it done at the end of my semester, toward mid-December, so I can wrap up my classes. Is that an option?"

My doctor: "December would be waiting too long. November would be much better. I can even put in a note to see if you can get in to see the doctors you're currently scheduled to see sooner than November." 

That was unfortunate, as it brought back the word that's been echoing in my mind during this whole journey: how inconvenient. My decision to have a double mastectomy doesn't scare me too much--like I've mentioned in previous posts, my mom went through a double mastectomy; I know several other women who have gotten double mastectomies; and I've been inspired by 20-somethings with the BRCA gene who have preventative double mastectomies "just in case" and even founded a nonprofit called "The Breasties"--but what scares me is how this surgery is going to mess up the plans I have for my life. Which I'm sure makes God #lol. (Proverbs 16:9 anyone?)

mayo-clinic-breast-clinic

My support system at my Mayo Clinic Breast Clinic appointment on September 25th.

A nurse came in to talk with me after my doctor left and gave me a binder full of images and information about breast cancer, surgery, recovery, and six CDs I can listen to for relaxation and meditation. She told me that, now that I've been diagnosed, it's important to have a support system in place--but one look around the room at my six family members around me and she said it didn't seem like I had any problems developing a support system. Then she said that I should expect to grieve my diagnosis emotionally as I would any other grief I might experience in the "Five Stages of Grief:" denial, anger, bargaining, depression, and acceptance. She said I shouldn't be surprised if I start crying while watching Netflix. Or doing another random activity. That the tears could come at any time. I've only cried once during this whole time, so I'm concerned I'm going to burst into tears at the most inopportune time. We'll see what happens! For now, I seem to have skipped over the first four stages of grief and hopped right to acceptance, which is fine by me. I process a lot by asking questions. Some things I've wondered about recently are: If I get a double mastectomy, what about breastfeeding our (future) children? Though, everyone I've talked to has basically said "no big deal." One of my friends said: "A healthy mom is the best kind of mom." Another friend said: "Some women aren't even able to breastfeed even though they technically should be able to physically." And my cousin: "Who actually remembers being breastfed? NOBODY! Being able to breastfeed does NOT qualify you as a mother." Other things: Double mastectomy--with reconstruction--is a major surgery, and recovery time is 4 to 6 weeks. All in all, I know I'll always have the joy of the Lord, something I'm grateful for and don't take for granted.

I'm scheduled to meet with a mastectomy surgeon on November 1st and was scheduled to meet with a plastic surgeon on November 11th, but my doctor let me know she was going to do her best to bump up those appointments because I can't schedule surgery before meeting with the surgeons who are going to do it. My plastic surgery appointment already got bumped up to this coming Monday, September 30th at 2:30pm. Stay tuned for updates about all of that! I'm formulating lots of questions including whether or not I'm a candidate for immediate reconstruction, and asking for lots of details about tissue vs. silicone reconstruction.

oh, and my twin sister might have breast cancer, too!

In the midst of all of these decisions, and to add to the stress of carrying the full weight of my diagnosis and making an official surgery decision, we just found out this morning that my twin sister's doctor found two lumps in her left breast at her recent exam. She got rushed into an immediate biopsy yesterday at her breast clinic, which pathology will look at and give her results for on Monday. So both of us--twins--might have breast cancer at the same time, at age 30. Or, I might be the only twin with breast cancer right now. Either way, we want to ask for prayer because we love and appreciate all of our prayer warriors!

My sister's bottom line of the full story is that it's important to do self-examinations and annual exams with your physician/gynecologist. My sister went in for her baseline preventative mammogram in August, got called back for follow-up ultrasound imaging because her breast tissue was dense and they wanted to make sure they weren't missing anything, and had no significant findings. Until she went to visit her gynecologist two days later, who felt a lump and said, “I feel an abnormality in your left breast.” The doctor asked if she had already had her mammograms done this year, and my sister said, “Yes, I did two days ago.” Her doctor said, “If they didn’t find anything, it should be fine. Just keep an eye on it, and if anything changes, let me know immediately. I’ll order you more imaging.” 

One month passed. My sister didn’t notice any changes and she didn't mention to us that the gynecologist had found a lump because she didn’t want to burden us with that information given my diagnosis and everything else going on. But when my sister came with me to Mayo Clinic this week and listened to the slideshow about how DCIS is able to break out of the milk duct and when it does, it becomes invasive and creates a lump, she became nervous that the lump her gynecologist had discovered was DCIS or something more invasive. So she made an appointment with a high risk breast center and had another physical exam. The nurse practitioner said it could just be the result of fibrocystic breasts, but ordered an ultrasound just like she’d done a month previously just in case.

My sister went in to have another ultrasound with the same radiologist that had done the ultrasound a month previous, only this time, the radiologist found not only one lump, but two. Not only did they find two lumps, but they recommended my sister go on to have a fine-needle biopsy immediately, that day. The area was locally numbed and the procedure took 25 minutes. The radiologist did the ultrasound-guided biopsy and a nurse took the photos for the ultrasound. Another nurse came in to hold my sister's hand. They got three takes from the first lump and four takes from the second lump.  The samples were then sent to pathology, who will analyze the samples and provide results on Monday. 

Ultimately, God is in control. But it still doesn't change that fact that my stomach felt like it fell out of my butt (again, just like when I got the news I needed to have a biopsy) when I found out my twin sister has two lumps in her left breast that could be breast cancer. It also doesn't change the fact that my physical journey over the next few months will be extremely painful and frustrating at times. So we wait. In the meantime, Psalm 27:14 is my mantra.

lumpectomy vs. mastectomy Q&A

Here is some more Q&A I had with my doctor at my appointment last Wednesday in case you had any outstanding questions about my decision, the differences between lumpectomy and double mastectomy, etc.:

Q (me): Would a lumpectomy be accompanied by radiation and tamoxifen

A (my doctor): YesYou would go through a lumpectomy, which is an outpatient procedure; heal for a few weeks; then have 3 weeks of 5 days of radiation or 3 days of proton beam radiation. You would also have to take tamoxifen for 5 years following the operation and radiation.

Is tamoxifen required after a double mastectomy as well?

No. Double mastectomy requires no radiation or tamoxifen after the procedure. Just post-op checkins and annual follow-ups. 

Then what are the chances of this coming on my right side if I got a lumpectomy or single mastectomy? 

You have the same chance of it coming on right side as you did on the left — 40% based on family history alone (see blog post about my genetic risk factors at this link). If you were to test positive for the BRCA gene, your chances increase to approximately 80%. If you were to test positive for the BRCA gene you would also have an elevated risk for ovarian cancer beyond what you’re already subject to due to family history. (As a personal aside: I’m planning to make an appointment at Mayo Clinic's high risk ovarian clinic as soon as I get through all of this breast cancer treatment.)

What are the chances of this spreading to my lymph nodes? 

I don't think it has. To be sure, during your surgery, they will insert a radioactive tracer to do a sentinel node biopsy as part of the mastectomy. While you’re under, they will take some samples and decide whether or not the cancer has spread to the lymph nodes or beyond the milk duct.

Scheduling surgery: Can I set a date now or do I need to wait until I meet with the surgeons to schedule a date? 

The surgeons need to know what kind of surgery you’re planning before they can get you a date in the OR. A lumpectomy takes much less time than a double mastectomy, for example. So plan to meet with the surgeons and set a date from there.

How long is recovery from this surgery? When can I go back to driving? School?

You’ll have drains for 10 days, then you’ll come back in for a post-op checkin and to get those removed. So you won’t be doing anything other than watching movies and reading books at least for that long. I wouldn’t recommend going back to work sooner than 4 weeks later. 

What would you do if you were in my position? Reconstruction or no? What are some dangers of reconstruction?

Definitely reconstruction. There are lots of options including skin-sparing mastectomy, nipple-sparing mastectomy, silicone “gummy bear” implants, and even your own tissue can be used as implants. All of our doctors are experts at those techniques. I would urge you to consider tissue implants because you can use some of your own tissue from your abdomen or other parts of the body instead of silicone. Silicone is great too but in 10 to 20 years it will likely need to be replaced or updated. There are other choices you'll need to make that the plastic surgeon can tell you more about--like whether the implant goes over or under the pectoral muscle.

Pros and cons of doing reconstruction now vs. later? Does immediate reconstruction prolong recovery? By how long?

Immediate reconstruction can prolong recovery by a couple of weeks. You have to meet fairly strict requirements for immediate reconstruction to occur at the time of the mastectomy. (My response: “I plan to qualify! I’m going to do even more bench presses than ever!”) My doctor laughed, then said: Right, so start doing some more push ups! On the other hand, traditional reconstruction is a 2 or 3 step process that occurs over 4 to 6 months.

Does silicone leak into your system over time or need to be updated?

It doesn't leak into your system--silicone implants today are like gummy bears. Not like real gummy bears but like gel that splits apart. It can feel a bit unnatural, and often times needs to be updated or replaced after 10 to 20 years. But tissue implants are always an option you could consider. Those have a bit longer recovery time but at least it is your own tissue and would never need to be replaced.

More Q&A to come after my plastic surgery appointment this Monday. Also, updates on my twin sister. Exciting times, and yes, God is good and is in control!!!

 

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