Patient Voices

Living Life In Between Cancer Treatments: A Story of Identifying as Non-Binary and Navigating a Chronic Binary Cancer

December 17, 2021

Dana Kivel (they/them/theirs) is a professor and former Chair in the Department of Recreation, Parks and Tourism Administration at Sacramento State University and is living with a rare, recurring form of ovarian cancer. There are many challenges Dana faces with this disease as a non-binary person, including having to navigate treatment for a gender-specific cancer in a binary healthcare system.

Gabe Glissmeyer (he/his/him) is a Project Specialist for the National LGBT Cancer Network, a non-profit organization that works to improve the lives of LGBTQIA+ cancer survivors as well as those at risk through education, training, and advocacy.

Through Syros’ partnership with the Cancer Network, Syros was introduced to Dana and Gabe, and we invited them to speak candidly about Dana’s experience about having a rare chronic cancer, their unique perspective on the healthcare system and learning to live life in between cancer treatments.

Gabe (G): You were diagnosed in 2011. What kind of cancer were you diagnosed with?

Dana (D): My cancer journey all started when I was actively participating in a study at a local university, where I would donate blood and urine samples every few months. One month after donating, I started to have extreme lower back pain. I have had kidney stones before, so my initial reaction was that this was the cause of the pain. When I got my blood results back, there was an email saying that this pain was in fact caused by kidney stones. For this reason, I went to the ER, and the ER doctor said, I'm more worried about the mass I see in your abdomen. If you were 80, I'd say you had cancer.  He told me to follow up with my primary care provider.  An ultrasound showed that I had a growth on my ovary and I was told to keep an eye on it. About eight months later, another ultrasound showed that the mass had grown. Two months later I went into surgery, and it was during this procedure I was diagnosed with a rare ovarian cancer – a very surprising and tough diagnosis to receive.

G: What has been your experience navigating your healthcare as someone that is non-binary?

D: Navigating the healthcare system has been challenging. I was in uncharted territories as I went to get various tests and procedures for my cancer, and I found myself having to educate healthcare professionals. My first memory was my visit to my gynecological oncologist. I had to check in at the "women's health" desk and there was a waiting room adjacent to the check-in area. I did a quick scan around the area and found a very small unidentifiable place for me to sit across the hall. From then on, I have always used that space because I didn't feel like I fit in anywhere else.

Another example is on my healthcare insurance card, there is only a space for F or M. Because I didn't want this binary designation, I contacted the member services office and they put in a "zero" on my card. With the 0 on my card, I have had to explain to the nurse every time what this means. It is frustrating because I am supposed to be at the doctor’s to discuss my possible recurrence of cancer and instead, we are in a lengthy conversation about why there is a 0 on my insurance card.

Thankfully, my partner is very proactive about which pronouns I prefer and will write how I want to be addressed on the white board whenever I’ve had to stay in the hospital overnight after surgery. There is always a lot of explaining to do to healthcare professionals and it is very emotionally draining especially when I am dealing with surgery as well as a challenging recovery.

G: Was your transition, as it relates to your gender identity, ever impacted with your cancer diagnosis?

D: Yes, especially because I have a chronic rare form of ovarian cancer - a cancer that keeps coming back. After my first surgery in December 2011 to remove the tumor, my cancer eventually did come back in the summer of 2015. At that time, I had also scheduled top surgery for later that summer. Since treating my cancer is my priority, I had to delay my scheduled top surgery. This was really hard to process because it was something I had wanted to do for a very long time.

I reached another hurdle when I started to speak to my primary care physician about taking testosterone and asked him to do some research. My doctor reached out to one of his colleagues as well as my oncologist and together they told me firmly no because there was no known research and there wasn’t any understanding of the long-term impact. I felt extremely disempowered because I wanted to be part of this conversation, but instead my doctors made this decision without my input. I didn’t even have the heart to push back. This decision was extremely hard to process since this is another thing I really wanted to do. Now the opportunity was shut out.

My cancer kept coming back, again and again and each surgery became more and more invasive. Due to my cancer and undergoing intensive surgery, I had to give up the hope to be able to transition. I have had to process this reality over the years and have come to terms with it because medically there is not enough research, and I don’t want to take that risk.

G: How are you moving forward?

D: As my cancer is incurable, I am trying to live my life between my treatments, while also navigating my gender identity. My gender identity and struggling with a binary cancer is something I don’t speak to a lot of people about. So, what helps me process this reality is educating others and teaching those about the challenges that I have faced with medical establishments. I am part of a Survivors Teaching Students group, where we speak to medical school students and nursing school students and I am able to tell my story about being non-binary, having this gendered-specific cancer and how I have navigated the healthcare system. Sharing my stories, experiences, and perspectives helps me reconcile my gendered cancer with my identity, even though I haven’t been able to transition. I will always continue to process this, but I am trying to live my life between treatments and continue to build my relationships around me, because the cancer doesn’t define who I am.