In the 1950s, my maternal grandmother died of breast cancer when my mom was 16. Knowing this disease was in my lineage made me hyper aware of screening and prevention options, as I always had a sense that it wasn’t “if,” but rather “when” I would be diagnosed myself.
When I turned 35, I scheduled a mammogram along with my annual gynecologist appointment. My gynecologist was supportive, but she also warned me that I would likely require a follow-up due to my age and having dense breast tissue. We also scheduled a BRCA screening since my family history meant that I met the criteria for needing one.
Sure enough, my mammogram led to a further screening: a “spot magnification view” of an area. Immediately after, the sonographer told me there was a spot they needed to biopsy. I was shocked as I thought this was just another test to establish a better baseline, but less than an hour after the second mammogram, I was on a table facing down with one breast in a “mammogram hold” and a radiologist performing a stereotactic biopsy on my left breast.
The stereotactic biopsy showed I had “atypical ductal hyperplasia,” and since they were not 100% certain it was benign, I was scheduled for a surgical biopsy. After that procedure a few weeks later, everything came back as benign. (Mind you, nothing being biopsied was palpable as these are very tiny clusters of cells one can’t feel.) Shortly thereafter, my BRCA screening came back as negative. I felt like all of this was my “breast cancer scare,” so I lived life with a very thankful heart, and thought I was done.
The next year, it was mom’s turn, but hers wasn’t just a scare. At the age of 75, my mother was diagnosed with Stage II Invasive Ductal Carcinoma in December of 2015. We live about two hours apart, but I encouraged her to seek treatment in my area so I could be present for treatments and recovery. (My nursing background comes in handy during visits with doctors and post-op recovery.) She began chemotherapy treatment in January 2016 and had to stop treatments in early April due to intense side effects. Her mastectomy with sentinel node removal was in May of 2016. She had another hospitalization in July of 2016, and found that she had congestive heart failure as yet another complication of her chemo. However, today, she is cancer-free!
But the story doesn’t stop there. I went for my annual mammogram and appointment with my surgeon in September of 2016. (Since my “scare” in 2014, my mammograms had to be read by him). My mammogram was fine, with no changes. As I was talking with my surgeon and telling him about my mom, he said I needed to complete a “Breast Cancer Risk Assessment and he thought I would meet the criteria for insurance to pay for a screening MRI. Sure enough, I met the criteria, we scheduled an MRI to get a better baseline and I wasn’t concerned AT ALL. The appointment was scheduled for mid-October after my kids started school (they are in 3rd and 5th grades) and, honestly, I wasn’t looking forward to paying the rest of the deductible to have this screening done. Now, hindsight tells me that was probably the most important $700 I have ever spent.
I had the MRI. I’m not going to sugarcoat it - it was a miserable procedure, but it didn’t last long, perhaps 20 minutes or so. I left the appointment more concerned about missing a day of work and having to juggle the kids. I didn’t even ask when I should expect to hear the test results.
About two weeks later, I got a call from my surgeon. The conversation was a blur because it was so completely not what I had expected – a couple of spots had been found. They would need to be biopsied, but the spots were small and he wasn’t sure if they could be biopsied with ultrasound. His clinic was scheduling me for the biopsy and I would get a call today.
WHAT? I had a call within the hour. The biopsy was scheduled for the next day. I was still thinking that it was scheduled quickly for my peace of mind, and surely the medical professinals weren’t that worried.
I went to the biopsy by myself, as I had been down this road before and I couldn’t see any reason for my husband to come with me. An ultrasound-guided biopsy is very different from a stereotactic. I could see everything they could see and when they actually found what the radiologist was looking for, my entire body went on high alert. I saw a spot that looked like a spider. As a nurse, I don’t know much about reading ultrasounds, but I know enough: I was looking at cancer. I also saw what looked like grapes to me. There were cysts everywhere in both breasts and I wondered how on earth could anything be found in the middle of all of that. Once the procedure was over, and the radiologist was talking with me, I stopped him and point-blank asked if it was suspicious. To his credit, he calmly said, “Yes. It is.” I’m not sure what held me together, but I made it back to my vehicle before I fell apart.
I knew to expect results two days later. My surgeon had a crazy day of surgery, but called me from his cell phone (never a good sign) on that Friday afternoon. This time I wasn’t surprised by his words. Yes, the spot is malignant. It’s small (about 1 cm). Low grade. He told me to come to his office Monday afternoon and we would talk about the options. In the meantime, I emailed my mother’s oncologist (who also attends my church and is a dear, dear person). She called me back once she got my email, and was absolutely shocked (and glad) that my surgeon ordered the screening MRI. We quickly talked over things, and she said she was going to discuss my case with my surgeon.
On Monday afternoon, my husband and I met with my surgeon and it was decided that I would have double mastectomy with reconstruction. With my personal history, family history, and my age (37), it just made the most sense. He recommended a plastic surgeon who was available that afternoon and we went straight there and talked through all the things you talk about when you learn that your breast tissue is about to be removed and replaced. Scheduling this type of surgery is complicated, but everything was worked out for my surgery to be the following Monday.
I had a double mastectomy with one-step reconstruction on Monday, November 14, 2016 - almost a year from when my mother was diagnosed. Recovery went beautifully. My lymph nodes were clean. There was just one tumor, and it was at .9cm. The diagnostics came back that it was Hormone +, and HER2-. My bone scan and CT in December were all clear. After some back and forth with testing and statistics, it was decided that chemotherapy would be beneficial to my prognosis. I began four of rounds Taxotere and Cytoxan on January 16, and finished my last infusion on March 20. I am taking Tamoxifen now.
The most common question I get asked is “When did you feel the spot?” My answer? Never. I never felt anything. My cancer was diagnosed early ONLY because I had a screening MRI.
So, what message do I want readers to glean from this post? Take advantage of every preventive measure available. If you have a “feeling,” don’t ignore it. Question your healthcare provider. If you are simply dismissed as being anxious, change providers. Also know, as my surgeon was quick to remind me, that just because I tested BRCA negative didn’t mean that I would never develop breast cancer. So if you test negative for genetic mutations, continue being vigilant anyway. Take charge of your care, don’t be passive and make assumptions, and find good healthcare providers (and stick with them). I cannot explain how very thankful I am for mine.