Introduction

I’m 27 years old and work full-time as a social worker in foster care. I’m the regional director for Louisiana and South Carolina. I love my job. I’ve been working in foster care since I graduated college and I don’t see myself doing anything else.

When I’m not working, I’m outside. I don’t care what the temperature is or what the conditions are. I’m barefoot if I can be and if it’s safe to do so, which my friends think is crazy.

I rock climb and mountain bike a lot. I go hiking. I like lying in the grass and looking at the sky.

I have a dog, a five-year-old mutt who’s the best. I’ve been in a relationship for three years. I started three months before I was diagnosed; talk about diving right into a relationship. I travel full-time with my partner. She’s a respiratory therapist so we go wherever her work is and I work from home full-time.

Other than that, I had no symptoms. Sometimes people look back and say, “Oh, now that I think about it, maybe this and that.” I had nothing else.

The lump was big enough for me to know that it wasn’t a cyst, a bump, or a bruise. The best way I can describe what I saw was a lot of defined edges. It was the strangest thing I’ve ever seen on my body.

Because of my family history and my BRCA1 genetic mutation, in my gut, I immediately knew. I didn’t panic. I wasn’t in denial. I knew I needed to do something about it.

Testing for Breast Cancer

I went to the same imaging center where I get my scans every six months so they knew me and were familiar with my history. Usually, when I would get an ultrasound, they say, “Have a great day! We’ll see you in six months,” or, “Hey, we want to take a peek at this quickly.”

It was significantly different this time. It felt like I was the only one in the facility. It went silent. After my ultrasound, they immediately took me back for a mammogram. Then after, they immediately took me back for an MRI without even waiting for insurance approval. They said, “We’ll figure it out later,” which I thought was crazy.

I had all of those tests in one day, which is not common. You usually go about a week between each one. After I had all of those initial imaging done, three days later, I was lying on a table getting a biopsy. It’s not common for everything to happen that quickly so in my gut, I knew something wasn’t right.

Learning About TNBC

I didn’t know anything about triple-negative breast cancer. As I was growing up, with my mom and her sisters having cancer, to me, cancer is cancer. Breast cancer is breast cancer. You either have breast cancer or you don’t. That’s the way that I approached it up until it happened to me.

I thought, Oh, triple negative. That’s amazing, right? Three negatives. We want that. We want negatives. I was then informed that triple-negative breast cancer is the most aggressive form of breast cancer with the least amount of treatment options. That’s the moment when I thought, Okay. This is real. My life is on the line here.

I was naive. I always thought that breast cancer is the most treatable cancer among women and all these other things you see online. I didn’t realize that there were so many subtypes of breast cancer and I got the worst one.

Treatment

Discussing the Treatment Plan

I went in naive. I thought, Oh, it’s a tumor. You can see it. Just cut it out, right? No, not at all.

My very first appointment after being diagnosed was with an angel in human form, who is also my breast surgeon. She is the best thing that happened to me through all of this. I walked into her office scared and she sat with me for three hours and went into detail about everything I needed to know about triple-negative breast cancer. She told me I was going to need chemotherapy first and then she would do the surgery.

Then I went to my oncologist and met with the nurse practitioner. I got “chemo education” where you learn about all of the side effects, the what-could-happens, and the what-might-happens.

Side Effects of Chemotherapy

After those four rounds, I was supposed to move on to 12 rounds of TAXOL (paclitaxel) once a week. About four weeks in, while having an infusion, my heart started doing some crazy stuff. I thought it was a panic attack. My vitals showed otherwise and they immediately had to stop treatment.

My port sits on either side of the chest and goes into the aorta. My port catheter had migrated into my tricuspid valve. If you know anything about hearts, nothing should be in there. That’s what triggered the Afib (atrial fibrillation). But they thought it was the chemotherapy so they stopped the Taxol and switched me to carboplatin. I did that every three weeks for four weeks.

My plan didn’t go as planned, but I was still able to get a substantial amount of chemotherapy within about 16 weeks. Once the experience happened with Taxol, I had to get my port removed.

I was able to finish chemotherapy. Unfortunately, I had to have the rest of my chemo through my veins so I had to get poked every single time.

Baths helped. Anyone who knows me is going to laugh when I mention taking baths. I probably took 5 to 7 baths a day. The warmth on my body was the only thing that made me feel like I could survive.

Honestly, sleep helped. There were days when I would take a Benadryl or my sleeping medication in the morning because being asleep felt so much better than having to be awake and endure what I was enduring.

Surgery

Double Mastectomy

After chemotherapy, I went in for surgery on August 30, 2021. The plan was a double mastectomy, lymph node dissection for testing purposes, and expanders to stretch out my skin to eventually get implants.

All went to plan. Everything was looking great. I had to stay in the hospital overnight. 

Complications from Surgery

When I woke up the second day, my chest was black. My skin was black. It was actively dying.

My team came in and explained that there was a dye that was used called methylene blue dye, which allows your surgeon to trace the cancer or for testing purposes. What ended up happening was that I was allergic to it.

We had to take the expanders out. On September 4th, I went back in for surgery. I was flat, which I was okay with. I was thinking I’ll get my expanders eventually. We needed to let my chest heal. It was black. There was no guarantee that my skin was going to recover. Thankfully, it did.

Radiation

Radiation didn’t go to plan either. It was really hard on me. Radiation can be different for everyone, but in the context of my surgery, the radiation affected my skin. The scar that we finally got healed broke open again. There were a bunch of delays and a bunch of little things that happened in between.

All that to say, I never got reconstruction because my skin was not in a position to do so. It may be in a few years, but to be quite honest with you, I’m very happy with what I have now.

Even if my surgeon called me and said, “You can get implants right now,” I would say no. I feel comfortable in my body. It doesn’t look the way that I imagined it would at 27 years old, but I’m alive, and being alive outweighs anything that my body could look like. It was a crazy experience.

Preventative Surgery

Total Hysterectomy

On October 12, 2021, I had a total hysterectomy. My mother passed away from ovarian cancer in 2011 so it was an option given to me as a preventative measure. Again, that’s a conversation that individuals need to have with their medical team, but that was a decision that I made for myself.

Thankfully, that healing was textbook perfect. I handled that very well and recovered very well.

Follow-up Protocol

November 2023 puts me at almost three years since diagnosis, which is crazy to me. I see my medical oncologist every 3 to 4 months, which seems to be on par with the community. I don’t get any scans unless there’s a reason to do so.

I get a Signatera test. It’s a very new development. It’s a cool test. They take your initial tumor DNA, draw your blood, and match it to your current blood DNA to see if there’s any circulating tumor DNA in your blood.

I’m not convinced that I trust it 1,000%, but for me, the reason we do that is that my tumor markers are not reliable. When I was diagnosed with cancer, it was a 9 and it’s been 9 ever since, even though I currently don’t have cancer so it doesn’t provide us accurate information to use it for determining reoccurrence.

I get a bone density test every two years because I had a hysterectomy and estrogen is what fuels healthy bones. I still see my gynecologist once a year to make sure that the fluid in that area is free of cancer.

I see my breast surgeon every six months or once a year to check on scarring. She does an exam and checks my chest wall, my armpits, and my neck. She is a true angel.

I see my team often and I plan to do so until I hit the golden five-year mark in the triple-negative breast cancer community.

As time passed and as we had more open conversations about my journey, I asked them if there was something I could have done differently.

The only thing they said was that they wished I didn’t try to save them while I was saving myself. I withheld a lot of hurt, pain, and diagnosis information from them because I wanted to keep them as blind as possible to what was going on.

It wasn’t lost on me that that was just as hard for them. They watched my mom die and I’m sure that it was very triggering for them. I look just like my mom. I talk and act like my mom. I’m sure there were a lot of moments where it was like, “Oh no, is this going to repeat itself?”

If you’re newly diagnosed or in the thick of it, I encourage you to let your people in. They want to hurt with you. They want to be scared with you. I promise you, it’s way less scary if you allow people to be scared with you.