Navigating an Endometrial Cancer Diagnosis: Advice From a Patient

If I could go back to my June 2022 self and tell her what was around the bend: a cancer diagnosis, starting the search for my birth mother, the sudden death of my adoptive father, the loss of my job - I probably wouldn’t have believed all of that could happen in 5 months.

When I think about what I would have wanted to know before, during and after my cancer treatment, here’s what I think:

• Get a second opinion
• Understand your health care insurance
• Bring a friend or family member to your appointments
• Find a strong support system
• Give yourself time to grieve

Get a second opinion

When I got my diagnosis, there was a lot of information from my OBGYN. I trusted her, after being in her care for several years. I met with her recommended oncologist and got my biopsy results. Since my OBGYN was from a different medical practice than my GP, I sent all of my lab work over to my GP’s office for it to be reviewed and ensure that the decisions I was making based on the diagnosis and my health records made the most sense.

Having more than one medical team look over my information eased my anxieties and helped me understand that I was making the right choices for me. I also sent my labs to my aunt, a breast cancer survivor, and a friend who had a hysterectomy a few years ago. Their experiences and opinions on my treatment plan were also encouraging that I was making the right decisions.

Understand your health insurance

From my own experience, I had to learn how difficult health insurance companies are and that they can be extremely frustrating to navigate. Luckily, the HR Director at my old job accidentally enrolled me in the “high level” insurance when I signed up, so I easily met my deductibles during my treatment and surgery. This also helped me go through the process with minimal medical debt.

Make sure you look at all your claims and bills - there were several times that due to administrative errors, claim dates, etc. that I was denied care or was overcharged for treatment. One time they denied my chest CT scan since my cancer “was not Stage 4” and it was deemed “medically unnecessary.” Another time, my pelvic (where my cancer was) CT scan was denied and my chest CT scan was approved. Make it make sense! I also found instances where I was billed for treatments from previous years that I should not have owed any money for.

Bring a friend or family member to your appointments

I grew up in Nebraska, so I don’t have any immediate or close family members on the East Coast where I currently live. I relied on two of my best friends who coincidentally both work in pharmaceutical marketing to be my “ears” during the early oncology appointments.

I gave them a list of questions I wanted answers to, so they could help ask them, if I forgot and they even asked additional questions based on what they knew about cancer treatment drugs. Although, I did chuckle when my college best friend asked my oncologist: “When does she start menopause?” My doctor replied: “She’s already in it. It started when we removed her uterus.”

Pan to me fanning myself through a hot flash and laughing that a gay man was asking about menopause without really understanding how/when it happens.

Find a strong support system

I signed up for some mental health services through my oncology team and for NYC’s paratransit, Access-A-Ride (AAR), which would take me from my apartment to the hospital and back home for all 28 of my radiation and 6 chemo cycles. I participated in online support groups and found a creative writing class (something I enjoyed in my school days). I found like-minded individuals on social media - connecting me with others who were still masking in public for various health reasons and sharing my cancer treatment story on my personal channels.

While I had a few friends abandon me during my treatment, not to mention a few people I had been dating pre-diagnosis; they were not in it for the long haul - I did make several new friends, ones I would never have to ask to mask when around me or regularly take a Covid-19 test, since they were doing the same. Building a community, no matter how big or small, helps during the journey.

Give yourself time to grieve

Whether you think about it or not, you do have to grieve your pre-cancer self. Your body does miraculous things, but there will be changes you cannot control - the hair loss, the weight loss or gain, having to buy new clothes. Take the time you need to do each thing.

I got a short haircut about two weeks before my aggressive chemo regimen started. Then, two weeks to the day of the first chemo cycle - the hair loss started. Patches, clumps, strands - until I just put a garbage bag over my shoulders giving Missy Elliott “Supa Dupa Fly (The Rain)” vibes and my high school best friend shaved my remaining hair off. It was freeing, but honestly the first time I saw myself as truly sick or as a cancer patient, even if I had been going through treatments for the previous 5 months.

Not all advice is one size fits all, but I hope that you take what I have to share and apply what will help you to your own cancer journey. By sharing what we have experienced, we can help normalize talking about hard things.