Ever since I was a young girl, I knew I’d get breast cancer. I had good reason. My mother’s mother got breast cancer at age 39. My mother’s sister got breast cancer at 41. My mother’s other sister elected to have a preventive mastectomy shortly thereafter. Breast cancer runs in my genes.
About five years ago, I was tested for the BRCA1 and BRCA2 genes—which are associated with increased risk of breast cancer. I was certain that I would carry the genes, but I didn’t. It was good news, but also bad news. With no provable genetic predisposition to breast cancer, I was left to keep advocating for myself. I demanded annual mammograms starting at age 30 (roughly 10 years prior to the age of my aunt’s and grandmother’s diagnoses). I got resistance from my doctor, so I got a new doctor.
Last August, I had my yearly. It was nothing unusual. So I was surprised when my physician called me at home an hour later. She said that she had reviewed my chart and noticed an increased risk for breast cancer in my family history. She said that I was a perfect candidate for the high-risk breast cancer clinic at the University of Iowa. She asked if she could make a referral for me and I agreed.
On my third trip to the high-risk clinic, they found a cluster of cells (using breast MRI and mammogram combined) that the radiologist and oncologist didn’t like. It was time for a breast biopsy.
The doctors said because it was caught so early, it would probably be either non-cancerous, a stage 0 cancer or stage 1 cancer. If it was not cancer, then I’d be back on the “every six-month” appointment schedule. If it was stage 1 or worse, that would be scary. I decided to hope for a stage 0 cancer. Just enough cancer to get insurance to pay for surgery, but not enough cancer to freak me out.
Then the call came. “Well it’s not nothing. It’s a stage 0 cancer. It’s ductal carcinoma in situ. That means it’s still in a breast duct, and likely noninvasive.” I breathed a sigh of relief. “Typically we’d do a lumpectomy and radiation.” The doctors said there was a high chance of recurrence in one or both breasts. I asked, “Can I do more than that? Like a double mastectomy?” She said yes.
Once I got my diagnosis, my doctor and I could choose the best option for me. And the best option for me included: no more six-month checks, no more waiting for biopsy results, no more waiting for the other shoe to drop.
I was 36 years old. Like most women, I liked my breasts. (To quote a card I once saw, “Yes, they are fake. The real ones tried to kill me.”)
And even though I didn’t have “The” breast cancer gene, it is likely we have a family gene causing breast cancer. Even worse, we can’t test for it yet.
I had missed picking up my daughter from the bus for three weeks. So I was happy to surprise her one day. The bus door opened and my Lucy bound down and gave me a hug. I looked up, and the bus driver said, “I hope your back feels better.” I waved at him as he drove off. I asked Lucy what he meant, and she said, “Well it’s easier than talking about the front side!”
That is why I share my story. Breasts are not easy to talk about, no matter how old you are. I share my story for Lucy. I pray that medicine continues to improve. I hope more people find cancer at stage 0. I hope there are more tests to help people know their risks. I am enrolled in a clinical study to help pay it forward. I hope we find our family gene or other markers to help people understand their risks. I pray health insurance becomes affordable for more people. If I had another type of insurance, I would have paid $10,000 for each six-month MRI. Which means I would have simply said no way.
Most of all, I share this to let people know to talk to your doctor about family history and risk factors. While you can’t change your family, as much as you might like to sometimes, their paths can actually help change your path. I believe that my gynecologist saved my life. My cancer ended up being a 3-centimeter, high-grade, estrogen positive, aggressive cancer. A year or two of waiting and my diagnosis would have been completely different.
The phone call with the biopsy results changed my life. It took the death sentence of breast cancer away from me. I guess I better start jogging, I could be here for a while. Let’s hope.
Hidden or exposed
People are fighting them
Be strong, be kind