Adam Stern, MD, is a psychiatrist and director of psychiatric applications at Beth Israel Deaconess Medical Center and instructor in psychiatry at Harvard Medical School. He shares his unique story as a physician, about what it’s like to go from being in good health to living with kidney cancer.
I was diagnosed with renal cell carcinoma on January 19, 2018. The disease was a very aggressive form but also fairly localized with only invasion into the renal vein and nearby tissue, all of which was removed from my body a week after diagnosis. While I am so thankful that the disease had not already spread to distant organs before it was caught, one doctor indicates that in my case there is a greater than 50% chance that the cancer will eventually come back in some way, and it could happen at any time. Adding to the uncertainty of it all, there were a few miniscule nodules on my lungs at the time of diagnosis that are thought to be “nothing” but will have to be monitored to make sure they are not actually metastases. These circumstances can make a man very anxious, but I have come a long way in being able to find some semblance of peace and acceptance in the weeks since the sheer panic of the initial diagnosis.
After noticing some unintended weight loss and night sweats, I had already scheduled an appointment with my primary care doctor when I had my first episode of hematuria (i.e. blood in the urine). I got into see my PCP the next day. He sounded concerned but urged caution before overreacting. The labs would tell us some and the imaging study, a CT urogram, would be the most informative. I was still positively hoping it was just a kidney stone.
The labs started coming back that night just before bed. My wife and I loaded them up on the hospital’s Patient Gateway server and kept hitting refresh. They were not good, but in a nonsensical way that I couldn’t make heads or tails of even as a doctor. I was anemic for the first time in my life. Oh, that’s just the blood loss that I saw in my urine. I was spilling albumin into the kidneys and my globulin was elevated. What’s globulin again? The internet pointed me toward multiple myeloma. I forwarded the labs as they came in to my brother and father, both of whom are doctors, and each at least expressed mild concern but overall confidence that it would turn out to be something fairly meager like a kidney stone. The most concerning tests were actually the completely non-specific inflammatory markers. ESR and CRP don’t tell you what’s wrong, but they tell you something’s causing inflammation, and in me they were elevated off the freaking charts.
I spent the next day trying to get my PCP on the phone but was told by his administrative staff that he’s with patients all day and returns calls at the end of the day. I understand that but those other patients aren’t dying of God knows what and I’ve got a globulin level of 4.6. If there is any way you can have him call me between patients, please. It wasn’t in the cards, and I get it, too. When I’m working in clinic, I will ask my admins to put up a brick wall to keep away the people without appointments. The phone call returns in the middle of clinic are the fastest way to get behind.
As I waited for a call that wouldn’t actually come until 4:30PM, the only time I wasn’t panicking was when I was with patients. I could put them in front of all these terrified thoughts careening around my mind and have an honest-to-goodness human interaction.
Then I went to get my scan. The two techs were amazing. True pro’s that put me at ease. I told them the truth. Look, I can’t go all weekend without knowing. If you have any sway around here at all, I need you to ask the radiologist — an unseen figure I’ll never meet — plead with him that I need a wet read. I need to know what he sees before I leave here.
Sure thing but it’s just that he’ll communicate that directly with the ordering physician. The one I can’t get to call me back. Got it.
After the scan finished, I ran to the radiology medical records office and got the scan uploaded onto a CD. Maybe I could find someone back at my own hospital who would read it for me.
But when I got back to the medical center, there were no radiologists to be found. I skulked around the department and finally decided to look at the darn thing myself. This was the dumbest thing I could have done. What was I hoping to achieve? A psychiatrist looking at his own CT urogram is like … well it’s not like anything else. That’s how dumb and useless it is. There are no useful analogies.
As soon as I loaded in the disc, an image of my urinary system filled the screen. The picture was truly grotesque in the kind of way that I knew immediately and viscerally that I had found the source of all of my problems, whatever it was. My right kidney looked completely normal to me, while the object that used to be my left kidney was a repulsive, hideous, exploding mass of entropy-seeking sickness and death. It was the stuff of nightmares. This was no kidney stone.
I texted my brother a screenshot. I’m officially freaking.
And then the call I had been waiting for all day came in. My PCP had just heard from the radiologist who declared that I had renal cell carcinoma.
The six weeks since then have been a real roller coaster, with waves of emotions passing through. Sometimes I feel totally at peace with the diagnosis and other times I am overwhelmed with sadness, fear, or anger. I actually find that there are three activities that seem most helpful for me personally: spending time with my wife and one year old son, going for walks with music in my ears, and writing. I can’t predict the future, and so it seems like the best thing I can do for myself would be to live every day to the fullest. Sometimes this is easier said than done when I feel the despair and anxiety kick in. Still, we go forward.