Rebecca’s Story

I never really understood what to look for when doing a breast self-exam. I never did them and always just relied on my annual OB-GYN appointment for a checkup. One day, while I was gently scratching an itch on my chest, I felt a golf ball-sized lump on my left breast. I immediately called my partner over, and he hadn’t noticed it before either. I called my mom and a friend and panicked for a second. Everything you read online says a breast lump is usually benign — a cyst or a fibroid that often doesn’t require surgery. I wasn’t worried, but I decided to schedule a follow-up with my OB-GYN.

When I called, my annual appointment was still months away, so I waited until May 5 to be seen by a provider. At that visit, my OB-GYN had a student with her, and they both poked and prodded the lump. The lump hadn’t hurt before, but after they were done, it was definitely tender. When they asked if it hurt, I said yes, and they responded, “That’s great! Cancer doesn’t hurt!” Spoiler: That’s apparently not true. They weren’t worried at all, but they ordered diagnostic imaging, which is standard procedure for any lump.

I left and immediately called imaging centers. The earliest appointment I could get within an hour of my house was June 25. So, I continued to wait, still not worried, and told myself it was most likely nothing.

At 30 years old, mammograms aren’t routine until you’re 40. The technician who did my mammogram even made me feel a bit silly for being there, saying it was probably nothing and that an ultrasound wouldn’t even be needed. I was waiting for the radiologist to review the images when they called me back to say they needed more pictures of my right side. I was confused, thinking the technician must have made a mistake since my lump was on the left. I went back in, and they not only wanted an ultrasound of my left side but the right side as well.

It was in the ultrasound room that I knew I had cancer. I had researched what cysts and fibroids look like on an ultrasound. They are typically circular — like an egg or a golf ball — which is what I had imagined I was feeling. As I lay there looking at the totally black screen, I thought, “Wow, there’s nothing there! I am overreacting!” It wasn’t until the technician took a deep breath and said, “How long have you noticed this here for?” that my stomach dropped. The “nothing there” I was looking at was actually the tumor, and it was definitely not a circle. She also looked at my lymph nodes, and it was obvious I had a very large lymph node as well. During the ultrasound, they ruled out the right side as a concern.

Less than 24 hours later, my OB-GYN called with a referral to a breast cancer specialist and an order for a biopsy of the mass and my left axillary node. The biopsy was another two weeks later — two of the hardest weeks of my life. The waiting was so challenging, and I prayed for an answer before the two weeks were up. When I went in for the biopsy, the medical staff again seemed unconcerned, and the imaging looked a bit different, which gave me a sense of hope.

Then, on Friday, July 11, I received a notification in MyChart: “Invasive ductal carcinoma, with marked necrosis, Nottingham grade 3. KI-67 95%, HER2-, PR-, ER-.” In other words, extremely invasive and aggressive triple-negative breast cancer. My tumor is 7 cm, which is very large and makes me stage 2, close to stage 3. The difference between stage 2 and 3 is whether the cancer has spread outside the breast, which to our knowledge, it has not.

I knew immediately that I wanted to be followed by Moffitt Cancer Center instead of the breast clinic I was initially referred to. I put in a self-referral and began the grieving process. A doctor never called me to tell me the results. It wasn’t until I met with the surgical oncologist on July 28 that a provider sat with me, confirmed all the research I had done, and started creating a plan.

My diagnosis is not terminal, but it made me realize I needed to get my affairs in order. Before this, I wasn’t married, but suddenly, it felt so important. The man of my dreams gave me the ring of my dreams, and we got married on Aug. 3. At 30 years old, I met with an estate attorney to complete health care surrogate, power of attorney and guardianship paperwork. I also met with a business attorney to create a business succession plan and even had meetings with funeral homes to plan my final arrangements. I wanted to make sure my affairs were in order so that burden wasn’t left to my family and so that my husband would be able to own the home that was previously solely in my name.

Because my cancer is so invasive and aggressive, we had to do what’s called neoadjuvant chemotherapy — chemo before surgery. This is due to the high risk of the cancer becoming metastatic during the surgical healing process if we had done surgery first. My treatment plan is the standard of care: five months of chemotherapy, consisting of weekly carboplatin and Taxol for 12 weeks, along with Keytruda and Zoladex shots. This is followed by two-week cycles of doxorubicin and cytoxan for four weeks. After that, I will undergo a double mastectomy with reconstruction, and then we will see if more chemotherapy or radiation is needed.

I agreed to be part of a clinical trial that studies how patients’ bodies respond to chemotherapy and the potential of stopping chemo early if the tumor completely shrinks before the five months are up. It involved a lot of extra testing and imaging, which identified several significant things:

• I have the BRCA1 gene.

• My Mammaprint score is off the charts, meaning I am at an extreme risk for a recurrence after all of my treatment.

• I have bilateral breast cancer — the right side was indeed cancer, ductal carcinoma in situ stage 0.

I have since been removed from the trial for being so high-risk.

I spent my 31st birthday at the hospital getting my port placed and a full day of tests. I am cold capping to try to preserve my hair, which adds three extra hours to my chemo days and an extra $500 out of pocket per week. I received a grant from Hair to Stay, but the maximum was $1,500, which only covered about three out of my 16 cold capping sessions.

I was finally in a groove with chemo when I went in for treatment Sept. 10 and reported some adverse symptoms. My team was concerned and decided to push chemo back this week and get an MRI of my brain, a CT of my chest and additional blood work. My red blood cell count is incredibly low, meaning I am anemic, and they also found something suspicious on my lungs. I’ve been devastated because the only thing keeping me calm was having a plan and a routine. I hope to continue as normal, but every day has been a journey of trying to maintain a semblance of normalcy by working out, staying social and working.

I am a licensed clinical social worker and own my own telehealth therapy practice. My clients know I’m going through health challenges but don’t know I have cancer. I offered to refer all of them to other therapists, but they all chose to stay with me on my reduced schedule. I work a full workweek in just two days — Monday and Tuesday — with chemotherapy on Wednesday and Thursday through Sunday to recover.

-Rebecca