At some point, every doctor becomes a patient. For many physicians, experiencing serious illness and treatment is humbling, eye-opening, and, in the end, transformative. Dr. Patient is a Medscape series telling these stories.

I don’t look like a cancer patient. I didn’t have chemotherapy. I didn’t lose my hair. It’s not obvious to anyone, if they don’t see my enormous abdominal scar, that something crazy has happened to me. To this day, my prognosis is unknown.

A little over a year ago, I was diagnosed with stage IV metastatic renal cell carcinoma. I was 42 years old. My symptoms were what I’d call “middle age.” Mild fatigue. Some weight gain. Some perimenopausal symptoms. Nothing that was of any interest to anyone.

A few months before I was diagnosed, I developed neck pain — also not a symptom of kidney cancer. I saw orthopedics, I saw pain management. I had an MRI that was consistent with a herniated disc in my neck. The only thing that was a little funny was that I had high blood pressure. We thought the pain might be causing it.

But then my neck pain went away, and my blood pressure remained extremely high. I was checking it at home, and the numbers were crazy. I called my PCP, but they couldn’t get me in for a month. I called my pain management doctor. I had a strong sense that I was very ill, but I was the only one with that sense.

No one sent me to the emergency room (ER), so I sent myself. I went over and over, and nobody was impressed with me. The day I was finally admitted, my blood pressure was 220/190. Getting it taken in triage, they said it was my fault the reading was so high. Because my legs were crossed. Because I wasn’t hydrated enough. I wasn’t having a stroke or a heart attack. It was a panic attack, they said. “But I’m a doctor,” I tried to explain, fighting tears. “I’ve been tracking this.”

I was starting to question my sanity. Was I having a psychiatric event that I couldn’t self-identify? Did I have MS? Maybe gallbladder disease? Begrudgingly, they sent me for a CT scan.

And there it was. An enormous, fetus-sized tumor in my kidney.

I did not have any pain in that area. I had normal kidney enzymes. I did not have any blood in my urine. But I had kidney cancer.

It’s confined to your kidney, they said, because my scans from earlier that week had been read as normal. Except they weren’t. There were abnormalities that no one had taken seriously a few days ago when I was just an anxious, middle-aged woman who kept coming to the ER. Now, the story changed. There were lesions in my bone, liver, and lungs. Maybe you actually have cancer all over the place, they said.

It was like whiplash, going from trying to convince people that I was ill to being told I had stage IV cancer. I was a little relieved that at least there was a cause. But I might be dead in 18 months. Mostly I thought, My kids. How can I do this to my kids?

At the time, my daughters were 7, 12, and 15. I talked to Child Life about what to tell them. I didn’t want to lie. But they didn’t need all the information, and there was so much uncertainty. 

The script was: 

There’s something in my body that shouldn’t be there. 

I’m going to need surgery to take it out. 

We don’t know what else is going to happen. 

I’m going to be sick for a while, and I’ll be in the hospital. 

I’ll tell you things when I know them. 

Right now, we’re just going to trust the doctors and lean on our friends until we find out more.  

“You are going to be okay,” I told my oldest, who clearly noticed that I said “you” and not “we.”

Cancer is very familiar to me. I lost my younger sister to it as a child. She was diagnosed with a Wilms tumor when she was 4 and I was 10. She died 4 years later. Allegedly, my kidney cancer is unrelated to hers. But in part, it’s why I became a pediatrician.

I spent a lot of time in medical settings as a kid. When my sister had chemo, we would sit in the kids waiting room, and I’d play Ready Set Spaghetti with the other cancer patients. I learned that I liked taking care of people.

But looking back, I think it was also that I didn’t trust anyone. My sister’s kidney cancer was cured, but the radiation treatment gave her leukemia, we believe, which ended up killing her. I thought, If I’m the doctor, I’ll make sure that everybody’s taken care of well. It was probably a trauma response.

Cancer treatment has changed so much since then, and even since I was in medical school. I chose to have surgery before I had a firm diagnosis just to get the tumor out of me, along with my kidney. My cancer is not treatable with chemotherapy, so I started immunotherapy. 

We still weren’t sure what stage I had. They gave me a list of requirements for my cancer to be considered stage III instead of stage IV. It seemed very implausible that they would all happen. And then they all happened.

No circulating tumor cells were detected in my blood. Follow-up scans showed no new lesions and one improved lesion. All my biopsies were negative. I had negative genetics and negative bone scans. My kidney and liver function returned to normal.

One doctor told me that in 3 years, I’d either be dead or I’d be completely fine. It was a blunt way of saying my cancer is so rare and my presentation so strange that they have no idea.

As a clinician, I’ve had to give patients news that they obviously don’t want, and I know how difficult that is. It feels like you’ve brought this terrible diagnosis to someone who had never imagined it before. It feels personal.

As a patient now, my preference is “gentle but truthful.” Although it seems kind to put a bow on it or present it as better than it is, that isn’t really in anyone’s long-term interest. False hope is very painful.

Experiencing the whole health system as a patient was eye-opening. I know how the hospital works, but absolutely nobody explains it to you when you’re admitted. Why you’re there. Who you will see. What’s going to happen.

And I don’t know how anyone navigates the insurance companies. I obviously have huge health literacy. I understand how insurance works. And still, I got half a dozen calls claiming that I had no coverage, that my doctor had written something wrong, or that I didn’t have prior authorization and that they weren’t going to pay. I spent hours on the phone. People drove me to Staples because I had to send records by fax.

A few weeks ago, I finished immunotherapy. My scans have been stable for a year. The treatment I received has only been around for about 10 years, so there’s no data beyond that. My cancer has a 40% rate of recurrence. It’s high. But it’s not terrible.

I’m trying to live sort of “in between.” Maybe I’ll have a normal life, or maybe my cancer will be back in a few months. Maybe I have more of a stable chronic medical condition, or maybe I have 18 months to live. I’m in a place where I’m trying to accept anything. So, it’ll be okay if they’re wrong about me being fine. And it’ll be okay if they’re right.

But I do know that the person I have to rely on most is myself. That’s no disrespect to my oncologist or my surgical oncologist. But the siloing where each person is dealing with a separate problem makes it very hard to see the big picture. I know that if I feel that I’m ill and no one else agrees, I have to keep fighting.

I heard stories from patients in the past about not being taken seriously, and I think my previous perspective was that they didn’t understand the system. I was less inclined to believe that their experience of being blown off was real. It is absolutely real. I know that now.

I think a lot about what I can do for my kids from this position. I never thought that this would be the end of our time together. If I’m not going to be there in the future as I planned, what can I do for them now? At their ages, they don’t know me as an adult, and so some of the writing I’m doing is for that purpose. What can I show them about having cancer if they have it one day? What I can do now, knowing that the future is uncertain?

My youngest daughter and I wrote a children’s book together that we recently published. Basically, she had always wanted a dog, and I always said no. And then I got cancer. And we got a dog. She adores the dog, but she started to feel guilty that she got him because I got cancer, and part of her is glad it happened.

We talked about this a lot and drew pictures, and then we wrote, Molly and Potato. It’s about a girl and a dog and a mom with cancer, and how it’s okay to have complicated feelings. My teen daughters made a website, and it’s been a lovely family project. 

We’re going to do an author reading at Give Kids the World Village in Orlando, Florida, a charity for kids with chronic diseases. It’s a place I visited as a child with my sister.

I feel a little bit like an imposter of a cancer patient. Maybe I got off easy. Although this has been devastating, I’m grateful for all the ways that I have, in fact, been very lucky. For now, I’m otherwise healthy, they say — except for the part where I have cancer. 

Kelly Curtin-Hallinan, DO, is a pediatrician with WellSpan Health in York, Pennsylvania; a board member with Pennsylvania Chapter of the American Academy of Pediatrics; and medical director for the Pennsylvania Office of Medical Assistance. She is the co-author of a children’s book Molly and Potato, written with her daughter.

Are you a doctor with a dramatic story about life as a patient? Medscape Medical News would love to consider your story for Dr. Patient. Please email your contact information and a short summary to access@webmd.net.