as told to Erica Rimlinger
I don’t remember a time when I wasn’t afraid. My mother was diagnosed breast cancer when I was a senior in high school and I was her caregiver until she passed away when I was 27 years old.
My mother’s genetic testing showed that she carried the BRCA gene, which I knew meant I could also carry this genetic legacy. But I delayed getting my own genetic test because I wanted to have more children. She wasn’t ready to have my breasts, uterus and ovaries eliminated if I were a carrier of the gene, and that would have been next.
Fortunately, I had a doctor who understood both my fear and reluctance to get tested right away, but was willing to pursue a course of action that assumed I had the gene. So I got an early annual payment. mammograms and pelvic ultrasounds from 27 years old.
After having my last child, my OB-GYN, who was also a breast cancer survivor, reminded me that it was time to get genetic testing. So, I finally got it done in October 2019, around the same time I got my annual mammogram. The mammogram results were normal, but the genetic testing results would take much longer to appear.
Unfortunately, three months later, before I had the results, I felt four different lumps in my breasts while I was on vacation with my husband. TO biopsy confirmed that there were four tumors that later turned out to be triple negative breast cancer. That’s when I finally got the genetic test results: As I feared, I had the BRCA gene.
I started chemotherapy when the pandemic shut down the world around me. No one could attend treatments or appointments with me: I walked alone into battle against this lifelong enemy. I started with a course of intense chemotherapy, then scheduled a double mastectomy and reconstruction.
Ten months later, tests in October 2020 showed that I had had a complete response to chemotherapy: my tumors had disappeared by the time I had the mastectomy. After my mastectomy, my pathology The reports declared me cancer free. I felt very relieved.
But I wouldn’t have been relieved if I or my surgeon had paid more attention. At the end of my post-mastectomy pathology report, filled with medical terms, unfamiliar abbreviations, and numbers that meant little to me, there was a red flag that no one noticed. It was a single line of text that said, “No clips found.”
During biopsies, doctors often place small clips in your fabric to mark the location of tumors. These clips appear in future scans to monitor whether tumors grow or shrink during chemotherapy. They also show doctors where to remove cancerous tissue during surgery.
To make sure they got all the tissue, my doctor should have removed all the clips during my mastectomy, but none were found in the tissue they removed. My tumors, which had grown close enough to the surface of my skin to feel like lumps, may have shrunk during chemotherapy, but the tissue they were in remained in my body.
In March 2021, four lumps grew back in the exact same places as my tumors, in the chest wall tissue. “It’s too early for it to happen again,” my doctor tried to reassure me. “It’s probably just scar tissue.”
But it was not like that.
After more chemotherapy and a second surgery to remove the new lumps, a radiologist noticed that the pathology reports for my first two surgeries did not mention finding any clips. Additional images uncovered the three clips on my chest wall. They had been there for almost an entire year. My surgeon, who left the clips in the first place, had to perform a third surgery to find and remove them before radiation could begin, which delayed my treatment.
I assumed the double mastectomy had protected me from a recurrence, but my tumors were always along my chest wall and not in my breasts. I am grateful for the radiologist who re-read my pathology reports and spoke.
After the clips were removed, I was finally able to start proton therapy radiation, which is a more precise type of radiation. Unfortunately, all radiation has side effects and I ended up with a recurring infection that almost killed me. I was in and out of the hospital for most of 2022. Finally, I had to have my breast implants removed in emergency surgery and I returned home with intravenous antibiotics. During one of my hospitalizations, we learned that my cancer had spread to my lungs, meaning I now had stage 4 cancer, which then spread further to my liver and spine.
I was at my lowest point physically. She was so sick and had lost so much weight that she couldn’t even take my son to school. But she knew she had to regain her strength and fight. I began to regain my resistance with high doses of intravenous vitamin C infusions. Additionally, my infectious disease doctor recommended hyperbaric oxygen therapy, a treatment that was developed for diabetic and burn patients to promote wound healing. Now, it is also used for radiation patients who develop infections that cannot be cleared with antibiotics due to poor blood flow. I spent three hours every day for three months in treatment. The therapy reportedly stimulates Mother cells grow new blood vessels, which helps increase blood flow, and I noticed a huge improvement. The wall of my chest, which had felt like a rock for months, regained its softness and color. You could raise your arm above your head again.
Now I started cancer treatment with a new medicine, called PARP inhibitor. Although I am undergoing treatment, I feel healthier than I have in a long time. I will continue treatment as long as it works. And so far, it’s working.
I am not sharing my story to blame or scare anyone. The fact is, doctors do the best they can, but they are human. I want women to know that healthcare works best when, as patients, we learn everything we can about our treatment. That allows us to be the best partners we can be for our medical team. Because it is your life that is at stake, no one will be a better advocate for you than you.
I will never know if I would still be in remission to this day if they had removed all the tissue (and the clips) during the first surgery. I can’t go back in time and ask the question, “Weren’t the clips supposed to come off?” Even if I had read that line in the report, I probably wouldn’t have understood its significance. The people who were supposed to know didn’t notice either.
But perhaps after hearing this story, a woman will read her pathology report a little more carefully. She may be encouraged to have better conversations with her health care providers; she maybe she knows to ask about the clips.
This educational resource was created with the support of Daiichi Sankyo, Hologic and Merck.
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