Getting BRCA test results wasn’t what I expected.

This series has been called what to expect when you’re expecting a BRCA test because I wanted to share my journey to help others prepare for this process. I wanted to use my experience to take away a little bit of the anxiety that comes with such a life changing test. Except the process has thrown me a curve ball and now I’m here to tell you that getting BRCA test results wasn’t even what I expected.

In 2023, I developed absurdly painful swollen lymph nodes and needed my first mammogram. It forced me to confront the reality of my genetic risk. I realized that if I had BRCA mutations, they were present whether or not I got tested and knowing my status could enable proactive steps to reduce my risk and ensure frequent screenings.

A few months later, I finally decided to proceed with a comprehensive genetic test for eighty-eight cancer-related genes. My genetic counselor reviewed my family history, confirming my high-risk status and explaining the insurance coverage and financial support available for the test. She helped me navigate complex decisions about the extent of the testing and potential preventive measures, like mastectomy and hysterectomy, which could be recommended based on specific gene mutations. As a disabled LGBTQ individual, navigating the healthcare system is challenging, especially ensuring all treatment options are available without religious or discriminatory restrictions. I was relieved to have found a hospital that would offer comprehensive care without such limitations, though it had taken some work and self-advocacy to find it.

The actual genetic test was straightforward, involving a simple blood draw, but it felt significant given the potential implications for my future. The nurse struggled to take my blood, which added to my anxiety, but eventually, the samples were collected and sent to the lab. After years of build up, I was left to simply wait for a phone call.

Through all of that, I expected to get a fairly straightforward answer. Some gene mutations we tested for would be associated with higher risks than others, so I knew the results wouldn’t exactly be black and white, cancer or no cancer. Still I figured either I had the mutations or I didn’t. In reality, when I got that phone call from my genetic counselor, she got right to the point saying that I didn’t test positive for any mutations in the eighty-eight genes we had tested. However, they had also calculated my risk based on the family history I had provided and they had determined that I was still high risk. They wanted me to enroll in their high risk breast cancer testing program that would frequently alternate mammograms and breast MRIs.

Well, fuck. No one told me that this was an option.

Sure, I had wanted to know if I was carrying a gene that can cause up to a 72% lifetime risk of developing cancer and a 44% lifetime risk of developing ovarian cancer. But those odds seem obvious. Alternatively, this wishy-washy “high risk” category seems less clear and more difficult to justify putting myself through frequent and early mammograms. See, my first mammogram proved to be one drawn-out act of medical discrimination.

The machine was set for standing height only, which posed a problem due to my condition, POTS, which causes my heart rate to spike and risk fainting when I stand. Explaining this to the tech, who had never heard of POTS, was frustrating. We awkwardly maneuvered an armchair close enough for the scan, with her handling my breasts uncomfortably and me trying to sit up as straight as possible so that I could reach the machine that wouldn’t go any lower. It was dehumanizing. I asked how she performs a mammogram on a person who needs a wheelchair and she said she would do the same nonsensical process she was doing to me. This experience highlighted the healthcare system’s failure to accommodate disabilities. I wanted to yell but I felt like I had to get through the appointment with a smile on my face since this woman was holding my breasts and squashing them in a machine.

I wrote before that my journey to genetic testing was not just about the science but also about finding humanity within it. I wish I could say that I had. As a chronically ill person I am frequently faced with the inhumane, biased, capitalist, and wildly unfair nature of the US medical system. I hoped that exploring the side of that world that deals regularly with the fragility of life would involve more empathy. Instead, I found that it is exactly the same as every other part of the system. Some providers like my genetic counselor are fantastic and wonderful people who truly seem to care and want to help. Some are like the person who performed my mammogram: well intentioned but unaware of their own bias and privilege. And others are downright discriminatory, incompetent, and heartless.

About a week after I got my test results I got a call from the breast cancer risk program at that hospital saying I had been referred and to call them to schedule an intake. I left the voicemail sitting there and I continue to include this on my to-do list each week, never checking it off. Eventually, I will make the call though I don’t think I’m ready yet. When I do I will likely ask more questions about accessible mammograms and MRIs because part of me still wants to believe it isn’t true that accessible machines don’t exist.

I hope the lesson from this journey is to advocate for yourself to access the testing, results, treatments, therapy, and providers that you need and deserve, whether you’re getting a cancer test, seeking a complex diagnosis, starting to transition, or anything else. It’s okay if your self-advocacy is reluctant or quiet or if you need to give yourself time to be ready. The system is certainly broken and you are justified if you too feel frustrated, overwhelmed, and ignored. I was definitely frustrated to learn that I was still considered high risk even though I didn’t have any of the cancer mutations in the eighty-eight gene profile and that I would still have to go through extra medical testing in an ableist environment because of it. Nevertheless, now I have important information about my health risks and access to a prevention program that I didn’t have before. I can make better choices for myself and my body because of it. We all deserve that.

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