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Being human Medicine Updates on my health

Here We Go Again?

It has been a long couple of weeks.  Let me explain.

I was due for my 18-month CT scan in early May. I remain on a cycle of getting scans done every 3 months. COVID-19 created questions about when I might get this done. In late March and then in April, all “non-essential” imaging studies were being cancelled or delayed. As a physician I was having to review lists of x-ray, echocardiogram and heart catheterization orders for my patients. We had an acuity system to decide how much harm would might occur if we delayed doing the studies. 

All my scans had been normal before. Where would I put my acuity? I didn’t call to get my CT scan ordered. It was likely to be another normal scan. They had all been normal so far. I wasn’t worried if my scan was delayed. Sarah pushed me a little bit. She asked me when I was going to get it scheduled. As COVID 19 cases plateaued and imaging was opening up, it seemed reasonable to get it done. I messaged my doctor and asked him. He ordered the scans.

I had to call to schedule it when I hadn’t heard anything after 2-3 weeks. They had slots available and scheduled me for the next week. I felt a little bit guilty going in. The scans so far had been negative. Was all of this for nothing? Was I going to do all of these scans and just always have them be normal? Maybe every 3 months was too frequent?

The morning after my scan, the MyHealth app alerted me to a new result. It was 6 am. I had just gotten up and gone into the bathroom to shower. My heartbeat quickened as usual with the “scanxiety.” I opened the result and read it. I was waiting for the expected reassurance. 

Not.

Two new enlarged lymph nodes in my chest. Could be nothing. Could be something. The report concluded, “New right hilar and subcarinal lymphadenopathy. Findings could be metastatic or benign.” 

There it was again. The outrageous immense contrasts in medicine. Yup. Could be nothing. Maybe you are just fine. Go on with life. All is good. Or you have metastatic disease, your life will be forever changed, and you may not be allowed to live to old age (or even to retirement). Crazy extremes. Nothing in the middle. All or none. Perfectly fine or miserable tragedy. Like a game of Russian Roulette, waiting for the reassuring click or a horrific explosion. 

I got ready for work. I tried to remain rational. Just two enlarged lymph nodes. Could be nothing. I messaged my doctors. Do we need to do anything? I read the result again. I didn’t like it.  How much enlargement is ok? How much is a nothing? How much is scary?  One lymph node had been there before. It was now 3x larger. The other popped up new. 

I tried to pretend that nothing was going on. Should I worry Sarah? What about my daughters? It might be nothing.

The feeling was there again. It is that feeling deep inside that there is a problem. It is that dread that weighs on you – or perhaps – runs as an undercurrent in all that you do. For me it can happen in an instant. I can be having a good and happy day and then something will worry me. A single bad thought in my mind will implant the feeling of dread in my heart. I will feel that weight pulling down on me. I can try to push through and do things, but it still weighs there.

I read the result again. I checked to see if I had any answers from my doctors yet. I didn’t.

We don’t know what this means. It could mean more procedures. It could mean surgery again.

The night before my first surgery I looked at myself in the mirror. I had never had surgery. Before the night of my kidney stone I had never even had an IV. Standing and looking in the mirror that night, I couldn’t imagine having incisions and scars on my abdomen. I kind of like having all of my original equipment. I didn’t like to think that I would have my body permanently damaged, never to be the same again.


Does this mean that I am going to have to go through something like this on my chest? Would it be surgery? I remember reading stories of other adrenocortical carcinoma (ACC) patients having surgical resections of isolated lung nodules and mediastinal (chest) lymph nodes. I have seen and taken care of so many patients after chest surgery. Will I soon be one of them complete with chest tubes and pushing myself to breathe against the pain of doing so? 

Could it be radiation? Is this what ACC recurrence looks like? Would the ACC experts look at this and be so convinced that they would jump to treating with radiation? Would I want radiation without knowing for certain that this was indeed a recurrence of my cancer? Another ACC patient I know had progressively enlarging nodes in her chest. She had opinions at two different expert centers. One told her radiation. The other did surgery to remove them. What would I say if my doctor told me radiation?

Or would it be chemo? I kept my bottle of mitotane. I was supposed to take it for 5 years. I had to stop it after 3 months because of side effects. The bottle is still sitting in the bathroom cabinet next to my sink. Every day when I get up I know it is there, waiting for me. It made me feel awful. It was destroying my life. Maybe it will be mitotane again. Maybe my horrible reactions to it were just a one-time sort of thing. Perhaps I would tolerate it better this time. Maybe I should start the mitotane again. This time I would start very slow and advance the dose also more slowly than before. Maybe that is what is going to be asked of me? If so, I am going to have to force myself to take it again. The very idea of putting it back in my mouth and swallowing it is abhorrent to me. But maybe that is what the future is going to hold.

Bigger questions start to rise up. Do these nodes mean that I am now stage 4?  The long-term survival statistics for stage 4 ACC are crummy. What does this all mean? I had just started being able to think about the long term again. My 12-month and then 15-month scans had given me confidence. I started thinking that I might indeed see retirement someday. Do these lymph nodes take that away from me again?

Will I be able to continue to work? The mitotane nearly took this away from me the first time. While I was on it I returned to work, but I struggled. Would this be the end of work? Or would it just be a temporary interruption again?

I checked my phone once more to see if I had any messages back from my endocrine oncology team.  No answer.

It was now into the afternoon. All day I had been seeing patients and pretending to be fine while I listened to their concerns and tried to help them.  After my last patient I went to my car. The weight on me was enormous. Sarah was asleep that morning when I saw the CT scan result. I didn’t wake her to tell her. I also had hoped that I would have an answer – reassuring or not – to be able to give her a more complete story. I couldn’t wait any longer. I didn’t even wait until I got home. I sat in my car at work and called her. I told her that my scan was not completely normal. I told her I didn’t really know if it meant anything or not. She could tell that I was worried.

Shortly after that I got a message from my oncology team. They needed to review things in detail before they could answer me. They were going to get my images, review them and then present them to the ACC tumor board. The tumor board was the Tuesday after next.  That was 11 days away.

More waiting. More churning. More speculation. More pretending that I am fine. Should I tell people? But what if it is all nothing? We told our girls. We decided to try to be calm and just wait for the tumor board and not alarm others.

It was a long 11 days.  I didn’t sleep the night well before the tumor board meeting wondering what they were going to say. All that next day I waited for the message. More of the aggravating crazy – all or nothing – tragedy or you are fine – contrast thoughts in my head. Between each patient I would check my phone. Nothing. 

The message finally came in the late afternoon.  “The tumor board recommended that we continue to follow to evaluate further at the next CT imaging to see if those may have been reactive in nature.”

So, what does that mean? Obviously lymph nodes can become enlarged for a lot of reasons. These could be nothing. But I don’t recall being sick. I still worried.

Today (now 2 weeks later) I spoke directly with my oncologist (Dr. Gary Hammer). As usual he was great. He explained that for my low grade “oncocytic” ACC, recurrence most commonly would occur locally (in the abdomen). It would be unusual (but not unheard of) for the first evidence of recurrence to be in the chest. These lymph nodes were big enough to not be considered “normal” but there was a good chance that they are not cancer. I asked about what could happen. He explained more. The best scenario is that these were just a reaction to something. In that case, on my next scans in August they will look smaller. In that case, I can then look back and laugh at all of my obsessive worry over these past two weeks. Or they will look bigger. Then it would likely mean some type of surgical biopsy or resection. 

Tonight, I am tired, but I finally feel better. There is a good chance that things will be ok. Even if they are not at least I have some idea of what could happen.  Dr. Hammer said this, “It is natural for you to be anxious. As your doctor I am not particularly worried about these lymph nodes. I won’t tell you to not worry. But I can tell you that Hammer has a plan. I hope that helps?”

It does help.  It helps a lot.

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Being human Medicine Reflections on Life, Being Human, and Medicine

The Preflight Inspection and How to Make Decisions in the Era of COVID 19

We walked out to do the preflight on our aircraft. The mission was to fly from Naval Air Station Norfolk VA to Camp Lejeune NC and back. It was 1994.  I was the flight surgeon for Marine Medium Helicopter Squadron 774 (HMM 774). We had just finished a preflight briefing in the ready room. I was to be the copilot for the mission. The pilot walked with me to guide me through the inspection.

Our aircraft for the day was a marine CH-46 Sea Knight helicopter. This aircraft was affectionately known as the “Phrog”. It was an unusual aircraft. It was a tandem rotor helicopter. This meant it had two main rotors rather than the usual main rotor for lift and tail rotor for control. This made it look a little bit like a frog, plus it had a tendency to bounce when you taxied it down the runway. Most of them were put into service in the 1960’s.  This last fall, Margaret took us to the Udvar-Hazy Smithsonian National Air and Space Museum facility. I was pleasantly surprised to see a Phrog on display. Amazingly the aircraft there is from my squadron (HMM-774.)  For all I know, the helicopter on display could have been the exact helicopter that I flew that day.

We got to where our helicopter was positioned on the tarmac. The pilot pulled out his flashlight from his safety vest. We carefully pulled and prodded and looked as we did the preflight inspection. He pointed out areas where the control cables could chafe and potentially wear through. He pointed to key areas on the aircraft that had been known to fail or break. 

“If this breaks, we will lose power to that rotor. We would have no control of the helicopter. We would likely do a loop and then crash and die. I know someone who had that happen.”

“If this cable breaks then we would lose control of this part of the helicopter. It is not clear that we would survive that. I know someone who had that happen.”

“This aircraft may actually be older than you. I don’t say that to scare you. I just want to explain why we have to be so careful. It is old and worn.”

The preflight went on and on with similar dire stories of his colleagues and friends who had suffered catastrophic failures and losses. Some had survived. Some had died. 

We finished the preflight inspection and climbed into the cockpit. By the time I strapped in I wondered about what I was doing. Had I told my wife that morning that I loved her? Should I slip out of the cockpit and run inside for one last phone call? Was I crazy to be flying that day?

I did a rapid calculation in my mind.  

On one side of the equation were the risks: I could crash and die. I would leave my wife a widow. I would leave my infant daughter without a father. The tangible risk of that fortunately was small. I had a very experienced marine aviator as the primary pilot. We had a good and well-trained flight crew. They all knew that particular aircraft in and out. We had scoured over the aircraft looking for any potential point of failure.  It looked good.

On the other side of the equation were the benefits: It was going to be a really fun flight. I would get to be at the controls for part of the flight. I also could better understand the operations of my squadron and the flight crews that I was responsible for.

I finished the calculation silently in my mind. I was staying. I focused again on the flight. 

It was indeed amazing. I got a lot of time in control of the aircraft. The pilot even let me taxi the Phrog around Camp LeJeune and fly it most of the way back to Norfolk. It was one of the most enjoyable flights I ever had in the military. It was really worth it.

Risk vs. Benefit. That is the term that describes what we do all the time in life, often without realizing it. 

That equation is one that has followed me and one I use continually in life. It is a key part of what we do in cardiology. We do risk vs benefit calculations with almost every patient interaction. How likely is it that their symptoms or test findings could cause a serious problem for them? Should we do a cardiac catheterization? Can we manage with medicines alone? Are the patient’s symptoms suggestive of a potential for a fatal event? Or are they going to be ok? Can we just reassure them? There is a cartoon of a doctor flipping a coin. “Heads you get quadruple bypass. Tails you just take a daily aspirin!” These are the extremes in the decisions we make on a regular basis. 

How do we make those decisions?  We carefully calculate the risk vs benefit.

For example, for a procedure:

  • High risk: Must be a high benefit.
  • Low risk: Not as much of a benefit is needed.
  • High benefit: Willing to accept a lot of risk.
  • Low benefit: Very little risk is acceptable.

Severe coronary artery disease (blocked arteries) especially in a diabetic patient? The benefit from coronary artery bypass surgery is very strong. It justifies the risk of having the surgery.

Stenting an artery in a stable asymptomatic patient with normal heart function? The risk is low. The benefit however is low. There is good data that they will do just as well with treatment with medicines. 

Yesterday I had this discussion with a patient. Should he have a defibrillator implanted? “Doc, just tell me what to do,” he said.  

I know that feeling. That is the attitude that most of us would like to take. None of us like having to make risk vs. benefit decisions. There are uncertainties. We would like to think that are always absolute and clear answers. If there are not, we generally want to just have others make the decisions for us. But to live responsibly we need to look at the facts and balance out the risks and benefits.

I needed for my patient to go further than that. I talked with him about why we would put a defibrillator in along with the tangible risks of doing it and not doing it. I reviewed the accepted standards of care along with what evidence was available to guide our decisions. In the end we made a decision together. The truth was that there were risks on both sides. Fortunately for this patient those risks were low regardless of which decision we made. Oddly the low risk vs low benefit decisions are often the hardest. But we needed to go through the calculation to make the decision.

That brings us to now. 

People are asking the question about whether certain activities are safe or not. 

That is wrong question. 

Nothing is completely safe. There is always risk to everything we do, now more than ever. 

Should I drive to work? I could be in car accident and die. But I also need to get to work. I choose to drive my car to work. I take precautions so that I can do so as safely as possible. But I do so.  Should we go sailing on Lake Michigan? One of us could fall overboard and drown. I could hit something and have the boat sink. The likelihood of both of those things are low. I think about the tangible risks, how I can control those risks along with the benefits (enjoyment, relaxation, etc…) and decide to go.

Is it safe? Is it 100% safe to open up and have church services? Answer: No.  Is it 100% safe to go back to work? Answer: No.  Is it 100% safe to go for a walk outside? Well – you could trip and fall and break a leg. You could have a freak storm come up and be struck by lightning. You could get attacked by a rabid squirrel.

“Don’t be ridiculous!” you are saying to me.  

That is the point I am making. If you are asking if any activity is “safe”, the answer is that no activity is 100% safe. There is always a risk. But we need to be realistic and understand what the extent of the risk is.  We will be ridiculous if we are trying to avoid all risk. That is not the question. 

Is the risk worth it? That is where you need to start looking at the benefit.  If the benefit is low – then no risk is warranted. If the benefit is high then a lot of risk is warranted.

The flight crews in World War II intentionally flew into cities with antiaircraft guns shooting at them.  There were people on the ground with big guns shooting with the very intention of blasting them out of the air and killing them. The flight crews still flew right into that. That is crazy. But the benefit (bombing munitions factories and thereby shortening the war) was so strong, that the degree of risk was warranted.

The soldier jumps out of the foxhole and charges the enemy line despite people shooting at him. But again, the benefit of winning the battle, rather than sitting and waiting to die in a stalemate, is worth the immense risk of charging the line.

There is a process that you go through to calculate the risk vs benefit.

  1. What is the risk? How strong is the risk? This is not an emotional question – this is one that you ask realistically. 
  2. What is the benefit? Again – this is a question that you need to ask in a mature and calm manner. What will happen if you do or do not do something?  What are the implications of your decision either way?
  3. Are there ways to reduce or mitigate the risks? Do they change the equation enough to change your decision?

How does that apply to today?

Should you go to the grocery store?  Is it safe?  Answer: No, it is not safe.  You could run into someone shedding the SARS-CoV-2 virus and get COVID 19 and then get very ill and die. What is the risk? The tangible risk of going to the grocery store, while observing careful social distancing and washing your hands afterwards is very low. What is the benefit? You need to have food. The benefit is pretty high. Can you reduce the risks? Yes – you could send one person into the store, you can wear a mask, you can wipe down the grocery cart with a disinfectant wipe, you can stay 6+ feet away from everyone else, you can plan your trip to minimize your time and exposure in the store, etc… Should you go? That is a personal decision based on the calculation you make about the risk vs. the benefit.

Should you go to the doctor?  What is the risk? At the current time, with all the precautions we have in place, the risk is very low.  What is the benefit? Presumably there is a reason that you have the appointment. Failure to pay attention and to treat your health condition could cause a much greater risk than going to that doctor’s office visit.  Can you reduce the risks? We have eliminated shared waiting rooms, screen both patients and staff for symptoms, insist on frequent handwashing and everyone wears a mask.  Should you go? We have opened our offices up again because we think under the right circumstances that it is.

Should you go to church if and when they reopen?  What is the risk? This is widely variable depending on how the church structures things and how people behave as they go to the service.  The risk could be enormous. A “normal” pre-COVID 19 church service could easily become a “super-spreader” event. One asymptomatic or pre-symptomatic person shedding the virus in close proximity to hundreds of people and singing for 20 minutes could infect dozens of people. On the other hand, an intentionally socially distanced and cautious church service has a lower risk. The risk is not “zero”. The risk is lower. No one really knows that the true risk is.  What is the benefit? That also is variable depending on the person. Some are able to effectively worship from home over the internet. Others cannot. They need the physical presence of others – even from a distance – to be encouraged and strengthened to live their lives.  What can you do to reduce the risks? There are lots of things similar to what I have already described. Should you go? The math is so dramatically individual that I cannot answer that. It is not an easy decision. It is one that each person and family will need to calculate. The answer also may shift and change as the pandemic spreads or wanes in each community. It might also change as we watch what happens in society.

The list of questions goes on.

In a risk vs. benefit approach it will create different risk tolerance depending on the benefit. You might choose in some circumstances to accept fairly high risks (like a soldier charging into battle). In other situations the benefit is so low that you should just choose to stay home and have zero risk. In other words, opening society doesn’t mean that you engage in the same level of risk acceptance all the time. It is completely dependent on whether it is worth the risk.

Should I have gone on that flight that day in 1994?  Even now some of you who are reading this might say that I should not have gone. I had a wife and a small daughter at home. I had invested years in college and medical school to become a doctor. For the thrill of flying a helicopter maybe I should not have exposed myself to the risk of crashing and dying.

My answer: Yes. Absolutely it was the right thing to do. I have never regretted taking that flight that day. It was an amazing experience. It helped me perform my job better. It was also really fun.  I also took great care to reduce the risks. I flew with an experienced pilot. We all had been through extensive safety training. We briefed before the flight. We inspected the aircraft thoroughly before the flight. We planned our course. One of us closely watched the charts for obstacles on the way. We maintained constant vigilance for other aircraft and for problems with our aircraft with attention to safety. I flew several times with them after that flight. Each time I did it I understood the risks. I also understood that it was worth it to me.

What is the right answer to all of the questions about opening up our society again?  Is it safe? Well, no, nothing is 100% safe. But does the benefit warrant the risk? If the benefit is low, then you shouldn’t accept any risk. But if the risk is low, then some things could be done again as long as there is a benefit.  

Will I go into a hospital room and examine a patient with COVID 19? The risk is high. The answer however is: Yes, I will (and I have) as long as there is a real and tangible benefit from me doing so. If I don’t have to go in the room I do not do so. But if it is needed, if there is a real benefit to the patient, I will do so. I will also take precautions to reduce the risk. 

I don’t have all the answers for everything as politicians and leaders consider opening up parts of our society.  The decisions are not easy. They are not straightforward. If, however, all we are asking is whether it is safe, we are deceiving ourselves. As we reopen people will get COVID 19. Some will get really ill. Some will die. What is the degree of the risk for each activity? What is the benefit? Is the benefit enough to justify the risk? 

Someday we will get beyond this and will no longer have to make as many of these hard decisions. Each week and each month we gain more knowledge. That knowledge hopefully will make these decisions easier. Hopefully we will be able to make better and better decisions as time goes on. But for now, we do the best we can. That means we are obligated to measure both risk and benefit to make the best decisions we can for ourselves and our families.

Ok. Our preflight brief is finished. We have done the inspection. We are strapped in. Let’s go flying.