Finally, the moment arrived for my BRCA test — a simple blood draw, almost anticlimactic for something that had the potential to be life-altering and life-saving. But how did I get here?
This moment had been something I’d been building up in my head since 2017 when I saw The Bold Type and Jane Sloan’s personal journey as she navigated her mother’s battle with breast cancer and her own subsequent decision to undergo genetic testing to look for BRCA genes. Now, here I was at my very own appointment in 2024. Sure, maybe it took me seven years but I was finally confronting, and struggling to manage, the overwhelming mix of anxiety, fear, grief, and empowerment I felt (but at least my therapist is fantastic). I was facing my own mortality squarely in the face and saying “bring it.”
So here I was, at a large hospital, as ready as I could be for my hour-long session where my family tree, personal history, and risks would be reviewed and evaluated. I was immediately struck by the warmth and empathy of my genetic counselor, whose name was Emily. She was kind and welcoming to both me and my partner, and never said any of the awkward veiled homophobia I usually hear in medical offices like “is this your friend” or worse, “is this your sister.” She was able to delicately balance the clinical aspects of genetics with the emotional weight of familial cancer history.
Most of my known family history and risk is on one half of my family, and the cancers that show up in my family tree can all be linked genetically. The counselor took all of this anecdotal information and plugged it into a mathematical formula. She calculated the risk that I would have a genetic mutation that is known to cause cancer. Even with only one half of my family history known to me, Emily confirmed my risk level was considered high enough to make me a strong candidate for testing.
It was strange hearing that out loud. I had already done my own research and knew that was likely to be the outcome, but having an expert confirm that I had a high risk level was both scary and exciting. I wanted to get the test, even if doing so seemed like asking a psychic when I was going to die.
Emily gave me information regarding my insurance coverage and financial support available through the genetic testing lab itself (not the hospital where I was doing the testing, but the organization that would actually analyze my genes). Fortunately, because of fairly recent health laws that require insurance to cover BRCA testing for high risk patients, my insurance would cover the test based on the fact that I was confirmed to be a good candidate.
Next it was time to consider how extensive I wanted the test to be, which required thinking about some of the most complex parts of the entire process: mastectomy, hormone therapy, hysterectomy, and more.
The genetic counselor was again fantastic and made sure that I didn’t boil over like an out-of-control pot of water. She told me that the recommendations for medical intervention can vary based on the specific gene combination that is found. For example, a mastectomy might be a recommendation for a really high risk gene profile, but monitoring and hormone treatment might be the recommendation for a more moderate risk gene profile.
The question of whether or not to get a hysterectomy or mastectomy or even do hormone therapy is inextricably tied to notions of gender and what that means, personally and societally. I was first introduced to those conversations ten years ago, when Angelina Jolie revealed that she had gotten a mastectomy because of her own BRCA mutation. At the time it terrified me. It sounded like such an intense surgery and it was impossible for me, at the time, to separate breasts from femininity. The media confirmed this with countless op-eds at the time arguing whether or not Angelina Jolie was still a woman.
Of course, I no longer believe that breasts are necessary to be a woman. Trans women are women, even if they don’t take hormones or get top surgery.I could still be a woman after a mastectomy. Tig Notaro, who I adore, went on stage shirtless r in her comedy special Boyish Girl Interrupted after a mastectomy because of breast cancer, and she identifies as a woman and a lesbian. I’d also spent time as the primary caretaker for someone recovering from top surgery and had first hand knowledge about the bandages, drains, scars, and all of the details in between. Top surgery and a mastectomy aren’t exactly the same, but the surgeries have a lot in common, and my queer experience gave me a unique perspective to bear witness to the ways in which breast removal could be a joyful experience and not solely something done out of the fear and pain that comes with cancer. It helped me understand the surgery from a practical perspective, rather than the fear and tragedy that often accompanies a mastectomy in the case of cancer.
Hysterectomy and hormones are a little harder to comprehend, because they are not as visible and public. I also have endometriosis and the lesser-known adenomyosis, both of which mean that the lining of the uterus grows where they are not supposed to, meaning it is wildly painful and extraordinarily torturous to have a period. For me, a hysterectomy would address these conditions as well, making it feel easier to consider such a big surgery. Pair all of this with the BRCA statistics: A BRCA mutation can cause up to a 72% lifetime risk of developing cancer and a 44% lifetime risk of developing ovarian cancer. For those with BRCA who do develop cancer, it is much more likely to be aggressive and more likely to be deadly. I had already decided if I had high genetic risk, I wanted to take an aggressive approach to fighting and preventing it.
In fact, my coming to this specific hospital was the result of a lot of research to confirm that things like hysterectomy would be an option. Navigating the healthcare system as a disabled LGBTQ individual in a post-Roe and post-Trump America is far from straightforward, and I knew that it was possible that religious hospitals and state laws could affect what treatment options are available to me. Having received affirming care at One Medical, known for its LGBTQ+-friendly environment and inclusive practices, I was taken aback when I was first referred to Providence hospitals. Despite Providence’s outward portrayal of inclusivity, deeper research revealed instances of discriminatory practices, such as denying transgender individuals necessary medical procedures or restricting access to birth control and abortion based on religious doctrine. Choosing a hospital system became a key part of my process and I had to do extra work to ensure comprehensive gynecologic care options and avoid discriminatory practices. I didn’t want to risk being denied all of the possible treatment options.
Now, sitting with Emily, I felt confident that I made the right decision. I wouldn’t have to worry about artificial restrictions on my healthcare. Instead I could just consider the range of genetic test options knowing that even if the test revealed a high genetic cancer risk, this hospital had a team who would give me all of the options.
Finally, it was time to decide how many genes I actually wanted to have tested. They could perform a targeted test focusing on specific cancer-linked mutations or a comprehensive panel. Emily noted that one reason to choose more targeted testing was because going with the full panel increased the odds of finding an unknown genetic mutation and that this could cause anxiety. Scientific understanding of genes and cancer is still evolving, and some genetic variations have been identified, but not studied enough to conclusively say whether or not they increase the risk for cancer. However, she assured me that the testing company would provide ongoing updates, ensuring I remained informed as the science developed. I decided to go with the full, comprehensive panel of eighty eight genes, choosing to confront the unknown with as much data as possible. I’d prefer to have all available information that science could offer me.
(Plus, the cost for the test would be the same whether I tested all eighty eight genes or a much smaller number, and I love a good bargain. Eighty-eight genes for the price of two, yes please!)
It feels like after all of the build up the actual genetic test should take place around a campfire with chanting and handholding, but the reality was anticlimactic and impersonal. If anything, the test itself felt really awkward. The nurse struggled to take my blood even though I am usually told by medical professionals that I “have good veins.” It felt like some part of my body was determined to express the anxiety I still felt by physically fighting back against the test. Finally after several minutes of poking at me the blood began to flow, they collected two small tubes, packaged it in a box to send to the lab, and I was finished.
As I left the appointment, I carried a sense of relief —tinged with apprehension, knowing that the next few weeks would surely make my anxiety boil over.
But what convinced me to do the test in the first place remains true: if I have the genetic mutations that increase my risk for multiple types of cancer, especially breast cancer, they’re already there — whether or not I get the test.
Now, as I await the verdict of eighty-eight potential cancer-causing genes, I am buoyed by the legacy of LGBTQ+ people who came before and whose courage and honesty helped bring awareness, empathy, and less stigmatization to breast cancer and the gender-based shame that can come with it. There is Wanda Sykes, who opted for a double mastectomy after finding what she called stage 0 cancer because she wanted to reduce her chance of it spreading as much as possible. Melissa Etheridge, who destigmatized the connection between breast cancer and femininity by performing bald at the GRAMMY Awards shortly after completing chemotherapy. Robin Roberts and her partner Amber Laig,n who both have had breast cancer and shared their experiences via Robin’s’ platform as a host on Good Morning America. Angelina Jolie, and her pivotal role in bringing BRCA genes and treatment options into the national spotlight. Audre Lorde, who published The Cancer Journals and detailed her own struggles with and views of post-cancer femininity.
I also still think of Tig Notaro, who in the middle of a stand-up comedy special being recorded for broadcast boldly unbuttoned her shirt, revealing her post-mastectomy chest. She did the remaining half of her stand-up set like this, forcing viewers to confront their own discomfort with cancer, mortality, gender, and health all in one subtle but significant move.
Tig stands on a stage for 20 minutes, literally in a spotlight and on camera, shamelessly showing her nipple-less, slightly concave chest with obvious red surgery scars. The first time I watched it I felt uncomfortable, being forced to face medical and gender stigmas at the same time while feeling amazed at Tig’s boldness. It felt like I was watching something public that was supposed to be kept hidden and private and it was inspiring to see that — see the mystery, and with it the stigma, stripped away. It’s what I aim to do with this series in some small, similar way. I think perhaps if the worst case scenario for my health and my gender presentation is that I have something in common with Tig Notaro… then maybe that’s not so bad.
What to Expect When is a series from Katie Reilly shedding light on cancer and the intersection of genetics, identity, and health.
I am also waiting for the results of genetic testing for cancer risk. Thank you for writing this – I feel seen.