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.