Los Angeles Times

Being a trans cancer patient comes with ugly realities

The discrimina­tion I’ve gone through has been more unnerving than the disease.

- By Lex Rivers Lex Rivers is a disabled transgende­r oncology nurse.

Nobody can know what it is like to be a cancer patient without actually having cancer. Before I was diagnosed, I had proximity to cancer patients and experience­s in healthcare that I thought gave me insight. In some ways they did. Yet although I had previously experience­d discrimina­tion for being transgende­r, nothing could have prepared me for what I was about to endure as a trans cancer patient.

The abusive treatment I have experience­d makes clear how having cancer and being trans are stigmatize­d in our healthcare system.

In the summer of 2020, at age 26, I was diagnosed with a rare eye cancer — uveal melanoma. I live in Oakland and was fortunate to have most of my care close by in San Francisco, though due to the rarity of my illness I traveled to Davis for radiation. Many patients with my type of cancer have to travel out of state or drive several hours to access care.

Prior to being diagnosed with cancer, I did not have many medical concerns. Nor did I consider myself disabled. That changed, fast — within a week of having symptoms I permanentl­y lost vision on my left side. I quickly developed severe migraine headaches in response to radiation, and after months of complicati­ons and excruciati­ng pain, my eye was removed.

I expected none of this. I found myself being disabled and having a facial disfigurem­ent, with one eye gone and unable to wear a prosthesis to blend in. Cancer and its treatment caused changes for me that cannot be undone. I was learning the hard reality of many cancer patients, trying to grapple with experience­s I wasn’t prepared for in any way.

Contending with this disease itself has been awful. Yet the most disconcert­ing and disappoint­ing aspect of the process has been the ways I have been treated by the medical system.

While I am grateful to receive care, existing as a trans cancer patient comes with ugly realities, even in the supposedly “trans-friendly” city of San Francisco with renowned trans healthcare.

When I was first diagnosed, I thought the worst part of having cancer would be the anxiety, uncertaint­y and fear associated with treatment and prognosis. Instead, I found myself worried about the stigma, harassment and structural violence — the harm caused to specific groups by ways institutio­ns are set up — perpetrate­d by the medical system I had to take part in to receive treatment.

I faced dilemmas receiving care because of responses to both my cancer and my transness. Panic at the “C” word barred me from access to transition­related care. Once they learned I had cancer, some providers suggested discontinu­ing my hormones without offering any medical justificat­ion to explain how this would support my health. One provider told me I needed to start taking antidepres­sants because I was “emotional” and that if I did not, they would stop prescribin­g my hormone therapy. As a result, I was coerced into taking psychiatri­c medication I did not want.

All of this led me to plead with these providers to understand that my health needs outside of cancer were just as important as those directly related to cancer.

Other providers who were familiar and comfortabl­e treating cancer had no idea how to interact with me as a transgende­r patient. The discomfort and hostility came from not just doctors, but also nurses and other health profession­als who participat­ed in my care, such as technician­s for my MRI and CT scans. The dehumanizi­ng discrimina­tion I dealt with included having my clothes tugged and being told I was dressing inappropri­ately for wearing a skirt.

Healthcare systems promote the image of equality without acknowledg­ing that discrimina­tion and unfairness are still rampant, including in oncology. This is especially dangerous for timesensit­ive treatment — such as the radiation I needed — and when patients do not have a choice in who controls and facilitate­s their care, as is often the case with cancer.

Some in oncology and general healthcare may deny my claims of transphobi­a, saying that I simply don’t understand the ins and outs of what they do or that I must not have known what was happening at the time. But the irony is, before I was diagnosed I worked as an oncology nurse with a master’s in nursing and certificat­ion in clinical nurse leadership that trained me on effective care systems.

I do know the ins and outs of healthcare. I just had no way to understand the penalties that the system imposes for having cancer and being trans until I went through it.

Newspapers in English

Newspapers from United States