I tried to lay on my side at bedtime but I couldn’t do it, it hurt too much and I had no idea why. I wound up sleeping on my back with my arm elevated on a throw pillow to keep it from pressing against me.The next morning the area under my armpit was decidedly swollen. I couldn’t feel any specific lumps but the entire area had just suddenly expanded like a balloon. I knew that this was something that could happen with an infection or even with some vaccines like the COVID-19 vaccine, but I hadn’t had any vaccines recently and I wasn’t experiencing any other signs of infection. I figured this probably called for medical attention as soon as I could get an appointment.
Heading into the appointment I had of course gone down an internet hole googling lymph node swelling and had wound up reading all sorts of things about breast cancer, lymphoma, and leukemia. It didn’t scare me as much as you might expect. Instead, I felt a weird mix of anxiety and almost curiosity, like I just wanted to collect the facts and get to the bottom of this mystery.
The prospect of cancer was definitely not new to me and in fact I already had scheduled genetic testing to investigate my risk for cancer based on family history. In particular, I was planning to get tested for the BRCA genes that greatly increase the lifetime risk of aggressive breast cancer. Having a scare like this in some way just seemed to make sense. While some part of me was afraid of potentially finding out it was cancer, another part of me was focusing on the science and logic: yes, you already know you might be at higher risk for breast cancer, this was bound to happen sometime. Let’s just get the tests and get it over with. I was worried, but I wasn’t spiraling out to every worst case scenario like I would usually do with a health scare.
The worst part of the doctor’s exam was when she pressed around the area between my armpit and my breast. The swelling made any touch, even the pressure from my own arm resting against my body, feel excruciating. She determined that the swelling was definitely coming from my lymph nodes and that since I wasn’t sick and this swelling was so dramatic, we needed to do more testing to make sure it wasn’t a sign of breast cancer. Just what I expected. She also performed a breast exam and reassured me that she didn’t feel anything else suspicious. I appreciated how matter of fact she was, just stating the facts without making anything sound scarier than it needed to be.
The next step was actually ordering the test and this part should have been easy. But I am a disabled LGBTQ woman living in a post-Roe and post-Trump America and healthcare access is not that simple. I knew that if my results showed any signs of cancer they would rush me into doctors offices and more detailed testing. I also knew, based on the fact that I have several chronic illnesses including Lupus, that it would be easier to start this process with the same medical system that performed the test if possible. Then I wouldn’t need to ask for records to be transferred and because sometimes if a doctor finds something really serious on a test they can request that you are seen urgently, helping avoid really long wait times.
I also knew that the genetic testing I had scheduled could potentially reveal that I carry genes that put me at high risk for both breast and ovarian cancer. It was possible that, if I did turn out to have breast cancer, my treatment would need to take into account that higher risk and include the possibility of things like mastectomy, hysterectomy, or hormone treatment. Considering all of this, it was important to me that this test be performed within a hospital system that didn’t have discriminatory views on LGBTQ or reproductive care that might limit my options. If I was going to consider the possibility of having cancer then I wanted to be sure all treatment options were on the table without anyone else’s view of what it means to be a woman getting in the way.
For years I have been going to One Medical as my primary care because I had heard, and then confirmed for myself, that they are LGBTQ affirming with options like hormone therapy managed in house (rather than requiring you to go to a specialist), openly LGBTQ doctors, pronoun choices on your medical chart, and gender neutral bathrooms stocked with things like free tampons and condoms. So I was surprised when the Los Angeles-area One Medical office told me that they have a partnership with St. Joseph Providence hospitals and usually refer people there. Providence is a Catholic hospital that, on the surface, pretends to be welcoming and affirming. A quick Google brings up Providence blog posts talking about how they value pronouns and have training for doctors on gender transition. But it also brings up more honest answers.
There was the case of Oliver Knight, a 29-year-old transgender man, who filed a civil lawsuit against St. Joseph Providence Hospital in Eureka, California, after his scheduled hysterectomy was canceled by hospital administrators citing conflicts with Catholic doctrine. There is the Orange County hospital, Hoag, and its fight to disaffiliate from Providence because it tried to force Hoag to enact bans on abortions and contraception. There is the California Kaiser Permanente which, in partnering with Providence, had to limit doctors’ reproductive care options for their patients. There is the Seattle Times story which confirms Providence does not permit “elective” abortion or gender-affirming surgeries on “primary” sex organs like the uterus.
I was really disappointed and frustrated to learn that One Medical, a medical system that does seem to make efforts to be gender inclusive and offers things like in-office IUD insertion without seeing a specialist would be partnered with such a discriminatory organization. No thank you.
I told the doctor I wasn’t willing to go to a Providence location and wouldn’t trust them to provide me the best care. Thankfully she understood and agreed to refer me to the same facility where I had already scheduled my BRCA genetic tests because I already researched that hospital’s policy. But it’s frustrating that I needed to do this level of quick research and self advocacy just to get an order for some imaging tests! It scares me to think how many people may be unwittingly referred to this discriminatory hospital system through One Medical, and if you are a patient there I recommend not only advocating for yourself but making sure that you message the “admin” on your account to tell them that this partnership is unacceptable and dangerous.
After getting an order and scheduling the test at a facility where I was satisfied they wouldn’t unnecessarily limit my medical care options, I thought the hard part was over. Sure everyone told me mammograms were uncomfortable, but I figured it would at least be easy. I would just go to the imaging center, sign in, wait to be called, change into an ill-fitting hospital gown, and get my boobs squished into a machine to scan them. It would be painful and awkward and it would make me anxious to wait for the results but it should be easy, right? Right?!
You would think that healthcare of all things would be accessible for disabled people — it seems easy to reason, because disabled people need to use the healthcare system more often than able bodied people. And yet when I went into the room for my very first mammogram I noticed that the machine seemed to be balanced mid air at a height that couldn’t possibly reach a person’s chest unless that person was standing up. So here I was, already vulnerable in my stupid ill-fitting hospital gown, in a room with a stranger who was going to squish my boobs into this machine, and I was realizing I was going to need to educate her about my disability and ask her to figure out some way to accommodate me. I was going to need to act like I wasn’t angry at all the hoops I needed to jump through just to access a basic test that every person with breasts needs to do at some point.
“I have a question,” I said, trying to be casual. “Is this test done standing up?”
“Yes,” the tech responded, as if it was completely normal to expect someone to stand up.
“Okay, that might be hard for me,” I said, trying to keep my voice level and calm. “I have a condition called POTS. Have you heard of it?”
She stared at me blankly. Cool. Cool.
“Well it’s actually become a lot more common with long COVID, so I’m glad I can tell you about it because there will probably be a lot of patients with it soon.”
I tried to sound optimistic and put a smile on my face, like aren’t I so lucky to be the first to tell you about POTS? I get to educate you in this carefully researched hospital system that might let me get an abortion, but has apparently done little to educate its staff on disabilities. So lucky of me. “POTS stands for postural orthostatic tachycardia syndrome. It means my heart rate jumps really high when I stand up and I am at risk of passing out, so I’m going to need to figure something out to take a lot of breaks.” I said “Or something like that,” I added with less confidence.
At this point she insists that I can do the test sitting down even though a few minutes ago that wasn’t an option. We awkwardly squeeze an armchair as close to the machine as possible and I have to stretch and strain my posture to absolute perfection for my breasts to be able to reach the lowest level of the imaging surface. While we’re shifting everything around I note that the tech is wearing a face mask, and I tell her that I appreciate this since we are spending a lot of time together in a small room. I’m wearing a mask too and I explain to her that if I were to get COVID I would be at higher risk for complications or worsening of my POTS. She casually says that she wasn’t wearing a mask until recently when she started doing some caretaking for her elderly mother. As she starts trying to shift around my breasts and the machine I am shocked to know that she spent a lot of time doing this job without wearing a mask. As she grabs my breasts and shoves them into place, her face gets so close to me that I could easily kiss her on the cheek without needing to move anything but my lips. It’s yet another reminder that the healthcare system was not designed with disabled and sick people in mind even though it pretends it exists to care for us. But this woman has my naked breasts in her hands so I have to keep all of that anger inside. Just smile and nod.
At this point I fully dissociated. I remember an awkward amount of touching and grabbing as if my breasts weren’t even part of a body. I remember her pushing my under-armpit fat roll out of the way without asking or acknowledging that it might make me feel uncomfortable. I remember that when the machine pressed down on the area of swollen lymph nodes it hurt so badly I was struggling not to shake because she said I had to stay still. I remember asking her if there was a different machine designed for people who need a wheelchair and cannot stand up, hoping that maybe there were more accessible options available that I could ask for in the future. I was told no. If she had a patient in a wheelchair she would do the same thing she had done for me, just trying to work around having them sit down.
I remember the awkward silence of waiting for a doctor to do a preliminary review of my scans to confirm that they had everything they needed, that we were done. I remember the relief that came with leaving the cramped room and the biased machine behind.
Still, I wasn’t yet done. I was sent to an ultrasound room for a more detailed look at the tissue under my armpits. At least this time I wasn’t expected to stand up. I felt so genuinely relieved to be done with the mammogram that it took a lot less effort to keep up my act of being a gracious, kind, and friendly patient who wasn’t pissed off at the entire discriminatory medical system. While I laid in the dark on the bed with the ultrasound wand pressing into my painful lymph nodes I chatted with the tech, complimenting the music she had playing and her choice of jewelry. The ultrasound was less painful and faster than the mammogram. Then the tech left to fetch a doctor to deliver my results immediately.
Finally something was actually easy. The doctor reviewed my test and the family and personal history from my intake forms. She said that everything looked normal, the swelling didn’t include any abnormalities so it was some sort of normal immune response, perhaps fighting an infection or a Lupus flare.
She noted that she could see that I had genetic testing scheduled soon and she agreed that this was a good step to take, based on my family history. She told me that the normal recommendation is to begin regular mammograms at age 40. I’m not quite there yet and my results were normal despite the swelling. But, she explained that she didn’t think waiting until 40 was necessarily the right step for me. She explained that the hospital has a high risk program where you alternate MRIs and mammograms every six months to proactively look for cancer and that depending on the results of my BRCA test, I should enroll in this program. (Great, I might get to do a bunch of mammograms and have more strangers squeeze my boobs onto a machine that was not designed to accommodate my disability. Again, so lucky of me.)
My partner and dog picked me up after my appointment because the testing wouldn’t let anyone else come with me. I got in the car, let out a massive sigh, and hugged my dog. I don’t have cancer, I told my partner. At least not right now I don’t.
A week after the mammogram I went in for the genetic test and submitted my blood for testing. I have to wait now to find out whether or not my body is carrying around a ticking time bomb. But I got a preview of what it might look like and how difficult and frustrating it could be to navigate cancer care and testing as a disabled LGBTQ woman and I left feeling angry and traumatized. I don’t know what comes next for me, but it at least reaffirms for me why I am writing this to share with you. It’s not fair that our community has to work harder to access medical care and has to encounter trauma triggers and discrimination when we do. For me, the best thing I can do to try to fight the system a little bit is to expose it and tell you every awkward detail so that you know what to expect and how to advocate for yourself. So whatever happens next, I will be here raising the red flags, calling out and naming the medical facilities that are failing us (like One Medical partnering with Providence), and demanding better. We deserve it.
What to Expect When is a series from Katie Reilly shedding light on cancer and the intersection of genetics, identity, and health.
Katie, your frankness and attention to how bias permeates these systems is so valuable. Thank you for documenting these moments, even while you’re navigating such an emotionally wrought period. This piece has fortified my own drive to push back when I find myself swept up in the medical system. I hope you get the information you need from the test.