The story of diagnosing cancer

At this point in my career, I'm well experienced at walking a family through the process of a new cancer diagnosis. From the patient side, it's a whirlwind of confusion and waiting and vagaries, but the process itself is usually the same. So from the doctor side, here is the story of diagnosing a cancer.

It always starts with one abnormal finding, something fairly innocuous, but difficult to explain. "Not sure what this is" and "We need to do more tests" are the words I tell you, and I have no evidence that it's cancer, but something doesn't sit right. I have a hunch. I go through all the millions of possibilities to explain this one finding, and in the end, I just have a gut feeling about it. "I'm not going to get a good night's sleep until I chase this down" is what I tell you, as I send you off with some labs to repeat in a few weeks, or a follow up x-ray. And two weeks later, it's still off, and maybe worse. It's a PSA of 7 or a lung nodule that's a little larger. There is a lot of mental debate, and maybe the workup starts, or maybe recheck it in another few weeks, or some more tests. The descriptions get more concerning, but still very vague: "I'm concerned that we need to rule out some serious possibilities" or "we need to take cancer off the table."

There is always that one alarming finding. Maybe the PSA comes back 157. Maybe you find bony metastatic disease. Maybe your abdominal CT reveals diffuse retroperitoneal lymphadenopathy. And if your doctor is anything like me, then maybe he throws something against a wall or maybe she curses loudly and kicks something. The language gets much more alarming. Maybe I'll be cautious and say something like, "I'm not sure what this is, but I'm really worried that this is cancer." Maybe I'll be much less optimistic and say, "At this point, it is almost certainly cancer. The only question is what type and can we treat it." Whatever words come out of my mouth, I am still guessing, because I don't have a biopsy, and I can't be sure.

There is no room for uncertainty now. I have to know, beyond the shadow of a doubt. I must have a piece of it. So I call up the surgeon or the interventional radiologist and tell them I need a stat biopsy. And normally the surgeon would say, "Screw you!" and maybe he does say that, but he readjusts his schedule, and he adds on this case, delaying or even bumping surgeries he's planned for weeks, ends up coming home late and missing his daughter's soccer game. He curses my name, but he does it because this could be cancer, and he knows the stakes.

The pathologist may get a chance at it with frozen section, where they look at it during the surgical biopsy, but more often than not, we have to wait for pathology to do their magic, and that will be 5-7 business days. And we're all waiting. Those knots and butterflies, I have them too. And so I try to keep you busy. I try to get the medical oncologist and radiation oncologist set up. I get the PET scan done. I try to keep the wheel turning so that these next two weeks of waiting can pass a little quicker. And I'm holding out hope that I am wrong, that this whole workup was a big false alarm.

The pathologist gets it and does all kinds of stains and treatments and manipulations of it, and probably they could tell me after 3-4 days that it's most probably cancer, but they know what's at stake. They have to be sure. So they keep testing it until they're sure, and then after that, they test it more to figure out what weak spots this cancer might have, where we can target therapies. They produce an exact report, but as soon as I read, "Carcinoma" then I've seen what I needed to see.

Now finally, you sit down with me and I tell you, in no uncertain terms, that this is cancer. I can tell you this because I went through many steps so that I was sure, and the pathologist went through even more steps so that she could be sure. We are sure, but you will still ask, "Are you sure?" It's not a dumb question. I asked too. And it will seem like a surprise to you, this process that you were intimately involved in, but it's always a surprise. And I am surprised too, because I was hoping so hard to be wrong. I was hoping that any number of people slipped up, and that this is one tremendous farce. And that is why I had to be sure, so that when you are sitting in front of me, crying and asking me deep, painful questions I can't answer, like "Why?" then I can I can give you the one certainty I have: this is cancer, and of that I am now sure.

Game face

I got into an argument with another provider. I really disagreed with his care. I saw his patient, and she didn't know that her diabetes was ragingly out of control, that her kidneys were actively failing, that the fatigue and dyspnea she'd been having for the last few weeks were heart failure. It was all news to her.

If you've working in any service industry, you know that what goes on in front of clients is very, very different from what happens behind closed doors. That shouting match you had with your co-worker is described as a 'friendly debate.' The flagrant incompetence of your staff is described as, 'Oh, she's still getting things figured out.' When we're standing in front of the people we're serving, we are trying to convey a sense of competence, so that they can have confidence in the care they're receiving. And sometimes, it's tempting to use this colorful language with diagnosis and management. We simplify and generalize and minimize and suddenly, terminal cancer becomes 'a concerning finding' and overwhelming sepsis becomes 'a serious infection.' In an effort to portray confidence, we create a false narrative of the events unfolding.

So when I saw this patient and told her the rather unpleasant truth, that she had multiple major medical conditions all doing terribly, she was stunned. And when I talked to the other doctor, I did not have any nice things to say, because looking competent and being competent are not the same things. And if you're going to put on a game face, then you'd better have the game performance to back it up.

Privileged #7 - comfort

In medicine, we are allowed to be involved in people's lives in a way that few other professions are. And sometimes, that can hurt. I had a former patient who was a lovable and gregarious gentleman with many unhealthy habits, so it was no surprise to me when I got the notice that he'd been admitted to the hospital. I checked the hospital records, and his room was listed as in the ICU. That's not super unusual. Sometimes, the hospital fills up and it's the only available bed, but I had a bad feeling, and so I checked his chart. He'd had a cardiac arrest and was currently on a ventilator.

I don't always visit my patients, but when someone is actively dying, I make the effort. I wanted to see him, see if I could help, and maybe assuage some of the guilt I was feeling. So after clinic, I headed over to the hospital, but I had a couple errands to run. I stopped by the cleaners to pick up my shirts, and I grabbed a few groceries for dinner. By the time I arrived at the ICU, things were fairly quiet. I made my way to his room and noticed that the lights were off and the monitors off. Before I could go in, the ICU nurse stopped me. She was one of my favorite ICU RN's, from an older generation of nursing when the job was brutal but humanizing. We'd shared many a dark moment in the unit, and this would be one more. 

My patient had coded about 60 minutes ago and died. They had only just finished getting him cleaned up for family to visit with him, pulling off all the wires and tubes and needles and tags. She was just finishing up her charting, since she was the code nurse for the event. 

I was devastated. I had just missed him. If I hadn't run those errands, I would've been there, but I wasn't there and for the dumbest reason. I couldn't have changed the outcome, and I wasn't the ICU doctor anyway, but he was still my patient. I should have been there, and I wasn't, because I needed to pick up my shirts before the cleaners closed. 

While I was standing there thunderstruck, the nurse pointed to the door behind me. The family was gathered in there. I hadn't seen any of them because they were waiting until the nurses finished cleaning him up. "You should go in," she said. So I screwed up my nerve and walked in to find twenty people jammed into a space meant for ten. There were sons and daughters and grandchildren and siblings, and at the head of the conference table was my patient's wife. I walked up to her and started to apologize profusely, but she didn't let me finish. 

"Oh doctor, I'm so glad you're here. Thank you so much for coming. It would've meant so much to him that you came." She then introduced me to her children and her grandchildren. I had expected wailing and sobbing, but they all had such a bittersweet expression, like they understood that this was the end of a beautiful moment, like the ending credits of a movie. They shared stories of his life with me, the life that I had never seen, the one that didn't involve A1c's or blood pressures or cholesterol levels. They laughed and cried. 

"Do you want to see him?" she asked me. Yes, of course. She let me go, while the family returned to reminiscing of better times. I left the conference room and went back to his ICU room. I held his cold hand and said my goodbyes. The family let me have my time, and I felt almost greedy that I should be the first to say my farewells. 

I came to the hospital expecting to provide support and comfort, and instead, I was the one who was comforted by this family who adopted me for one brief moment. I understood then that I was not a stranger in his life. I had been a part, however small it may have been, and was welcomed into the intimacy of his life. Since then, I've had other patients die, and I've grieved with spouses. I have several patients who've lost spouses who were under my care. They still come to see me, a testament to their faith in me, and when I see them, we share a little memory and a moment, and I can't help but feel so lucky that I am welcomed into their lives, and so honored that I should receive such trust.

Don't become a doctor #20 - treating the source

I am fond of telling people that all the advances of modern medicine account for maybe about 3% of the improvement in the health of the human condition. The other 97% of the betterment of humanity can be credited mainly to three things: clean drinking water, sewers, and immunizations. There are some other things too, like labor laws and pollution controls, but pretty much everything we do now in modern medicine is the equivalent of sprinkles atop an ice cream sundae. Your toilet has done more for the betterment of humanity than I ever will.

And really, the future of the improvement of the health of humanity doesn't lie in anything I can do or modify. If I wanted to make the biggest impact in the improvement of the health of humanity for the betterment of the general public, then I would institute universal basic income and mandatory pre-K through 12 education. I can do a lot of things right now: I can treat hypertension and diabetes, I can diagnose and treat complicated medical conditions, but I do not have a pill to treat poverty. I have no prescription for socioeconomic oppression.

Mrs B can't afford her medications. She has Medicare, yes, but she pays a monthly premium for a supplemental plan that only gets her out of pocket expenses down to $10-15 per prescription. How is that going to help her pay for the 8 pills I am prescribing? Best case scenario, that's $80 a month, but she only gets $800 from Social Security, and she spends $500 of that on rent. She literally cannot afford to be healthy. I see her every 3 months for what purpose? The diseases I am treating are not the principal problems of her life. Another $300 a month would make her far healthier than another diabetes medication. Having a blood pressure under 150/90 isn't going to get her electric bill paid. I asked her about it once. 

"I understand that you can't afford to do a lot of the things I'm recommending, but then why keep coming to these doctor appointments? You can save your copay." She was speechless for a moment, like that was even an option. The thought of NOT seeing the doctor is anathema to her. She wants to be healthy. She wants to do better. But she is swimming upstream without a paddle, and that paddle looks suspiciously like another $300 a month in her budget. I do a lot of counseling and education for her, because maybe she can keep up serious lifestyle changes, and maybe that will be an adequate replacement for lisinopril. 

I have a sickle cell patient who is frequently in the ER or hospital. She can't stay in school, can't hold down a job, can't have any semblance of a normal life because for her, a normal life involves spending on average 2 days a month in the hospital or ER. How is she supposed to better herself when she cannot access the tools by which people better themselves? Whenever I see her, I encourage her that she needs to work on avoiding triggers for a crisis. She needs to bundle up warm in the winter. She needs to stay really well hydrated in the summer. She needs to keep active, but not too active. She needs to wash her hands so she doesn't catch any colds. Her life is a constant vigilance to prevent her own body from betraying her. When does she have time for bettering herself, when all of her time and energy is put into avoiding being sick?

In America we always talk about pulling ourselves up by our bootstraps. But really, that assumes you have boots. If you don't have boots, then what? Forget boots, what if you don't have feet? We do not have equal standing in any respect. We do not have equal opportunity, equal adversity, or equal ability. If we do not share equally for the potential of success, then how can we expect people to be successful? So I don't spend much time with the successful. I spend most of my time with the losers on the battlefield of life: the injured, wounded, and crippled from chronic stress or poverty or oppression or injustice. They're the ones calling out for a medic.

The job of physician sometimes involves interfacing with a cold and uncaring world on behalf of someone unable to change their circumstance, and trying to make an improvement in a system that is fundamentally flawed. If you're not prepared to roll that rock up that hill, then think about something else. Because that is what I love about my job, that I get to fight for things that mean something, even if I'm not going to win.

Flight plans and unexpected turbulence

One of my patients recently found out that he has a terminal condition, and he is thunderstruck. He refuses to accept that this is the end. He says to me, "I can't just give up!" He tells me that he is going to beat this thing and win, and that he still has a fighting chance. But he doesn't. And I really want him to come to grips with this, because I want to make the end as pleasant as I can, and not misery.

And that's the problem of thinking of disease like a sporting event or a battle, because ultimately, everyone dies. Even if you win the game, the game is over. This is something you learn to come to terms with in internal medicine. Maybe a pediatrician or a subspecialist can insulate themselves from this reality, but my job is to try to extend longevity as much as can be reasonably done. I don't save any lives. All my patients are going to die, and likely while I am at the helm.

When thinking about life, I always preferred the metaphor of flying a plane. Every plane goes up, and every plane lands, and we want to go as far as we can, as comfortably as possible. And we don't get to choose our plane. We could get a Cessna, or a G6, or a Concorde, or even a 747. There's no choosing. We get the plane we get. But regardless of the plane, we're mostly all are trying to fly as far as we can and as comfortably as possible.

There are factors that we can modify. We can avoid bad weather or change our flight plan or change altitude or throttle. Maybe we know to do these things, because we got an airline transport pilot licence, and then we paid for good fuel, rigorously checked the flight plan, and had the best mechanics look over the plane with a fine tooth comb. Or maybe we never got a pilot licence because it was too expensive. Or we started out in a terrible airport surrounded by terrible weather conditions. Or maybe we didn't have any radar or doppler, and had to trust our gut about the weather. And maybe we didn't even know that these were things to worry about till we were already halfway through our fuel. Or maybe we decided to have some fun and did a whole bunch of air stunts, not realizing that it might cause stress damage. There are so many modifiable factors, and we can try our best to maximize our chances of flying far and smoothly, but in spite of our best planning, we could have a catastrophic failure of some little hydraulic tube that changes all of our plans.

And if something catastrophic happens, then it's not guaranteed that we are doomed. Maybe we can recover and still complete our flight plan. But some catastrophes we know will have no recovery, like if the fuselage gets ripped in half or a wing tears off. We're not going to make it to our destination. We're going to crash.

As a doctor, if I know we're going to crash, then my job changes. I'm no longer trying to help us get to our intended destination, but now I am trying to get us close to a nice landing spot, and help us land as smoothly as possible. Because there are bad crashes where no one walks away, and there are 'good' crashes where the survivors look back and think how lucky this was, given the circumstances. And so I'm pointing out to ease up on the throttle, avoid this weather cell, aim for this strip of highway, radio ATC and let them know of our situation, so there can be resources ready to meet us on the ground: medical personnel, fire crews, police to clear the scene. And I can't do any of those things if the pilot is not ready to concede that yes, this plane is crashing and we have to make the best we can of this terrible situation. No one wants to crash. But if that's your only choice, then I can help.