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Medicine Reflections on Life, Being Human, and Medicine Updates on my health

Scanxiety and No Evidence of Recurrence

I had my first follow up CT scans on Wednesday. I just got the results this morning. They show no evidence of recurrence.  That is of course great news and so I thought I would give an update on my health and progress.

As you may recall, adrenocortical carcinoma has a high rate of recurrence. 

  • Plan is CT scans of the chest, abdomen and pelvis every 3 months to ensure that the cancer has not come back.
  • I completed 25 radiation treatments on 12/14/18.
  • I have been on oral chemotherapy (mitotane) to reduce the risk of recurrence.
  • My pathology said my cancer was low grade but had some higher risk features.
  • My next appointment with Dr. Hammer is on 2/12/19.

We are frequently asked, “How are you doing?”That is always a hard question to answer. I will try to do so here:

  1. Mitotane: Mitotane is crummy! Just to be brief: Lack of energy, feeling dizzy all the time, have to push myself to think, persistent nausea (improved by Zofran but not always), itchy rash all over, cottony dry mouth that makes it hard to swallow and talk at times, cold intolerance (chills and feeling always cold), coughing whenever I try to sleep (probably from the dry mouth?). 
  2. Work: I have gone back to work part time and have been trying to ramp up the amount of time. Early on it was really hard. I would go to work and then come home after an hour or two and collapse and just fall sound asleep. It has gotten better. This week I saw a couple of patients in clinic and that was a real joy to me. I am happy to be able to contribute again. I am frustrated that I am not myself yet and can’t just jump back into everything.
  3. Mitotane hold and dose reduction: They were having me continue to push my dose up until I couldn’t handle the side effects. I hit 5 pills twice a day about 2 weeks ago. This past weekend I was not doing well at all. Imagine feeling so crummy that you just decide to go to bed so that you could hopefully sleep instead. And then once I was in bed I would just cough and cough and not be able to sleep. On Monday I let the team at U of M know. They had me stop the mitotane for 4-5 days until I start to feel better. I am feeling a TON better (like a weight was lifted off of me). I am hoping my rash will improve and then I can restart the mitotane at 4 pills twice daily on Saturday.
  4. Scanxiety: Others have told me about this. The odds were that I would not have had a recurrence. But, just having the scan always creates anxiety. Were some of the subtle things on the prior scans just waiting to progress? Was this scan going to show horrible problems? I would read on the ACC Facebook group about all the people going through repeat surgeries, radiation and intensive chemo. I realized that all of that would change everything = total disability, complete change in life and outlook, etc… It is amazing how things can hinge so dramatically on one test result. A = you are fine. B = dramatic horrible life change. No wonder people talk about the anxiety of getting and then waiting for the test result. I wish I could tell you I was calm. It is entirely possible that I looked for my results to appear on MyHealth about a gozillion times yesterday! But I had good news!
  5. Looking good: I don’t show much on the outside. I think that is a good thing. Even when I was really nauseated and having to hold the walls because of dizziness I was told that I looked good. I know that there are many people with significant diseases that have the same thing. I mention this just as a “shout out” to those who have endured that for a long time. 

The question is are there lessons in all of this?

Drama:I prefer calm and controlled. Now I understand how medicine can be so cruel in how it gives these all or none dramatic experiences. The timely response of my team in getting results to me was so important.

Off balance: I am figuring out uncharted territory. There is no magic guide that tells you what to do or what not to do. I do not know what my body will tolerate. I just kind of need to go forward and test it. Last week I said, “If I am going to feel crummy I might as well feel crummy doing something!” It is an odd thing to try to figure out energy conservation. What should I do and how should I save my energy? And then even that is a constantly shifting thing. Most of our lives we settle into a normal pattern. The “new normal” isn’t there yet. It is constantly changing day by day and just makes us feel very unsettled.

Patience:I was feeling sorry for myself the other morning. Sometimes you just want to be back in a rhythm. Regardless of what it is – I wanted to get to a “new normal.” Even during radiation, I actually had a pattern. Now I don’t. In my devotions that morning I read from James 5: “Be patient, then, brothers and sisters, until the Lord’s coming. See how the farmer waits for the land to yield its valuable crop, patiently waiting for the autumn and spring rains.” That was what I needed to read.  The farmer can’t by anxiety and worry make the crops grow. He can’t make the autumn or spring rains come. He just needs to wait. LOTS of you have had to do this. That is what the Lord is having us to do now. It stretches me. Accept uncertainty. Faith. Figure out what today brings and accept it. Walk step by step. 

Speculation and anxiety:This is natural. I know we can say not to do this (to speculate or get anxious about what might come.) But, to be human means that you are going to think through things. I sat on the ACC Facebook group reading about how people have lived (or not lived very well) on mitotane. One discussion on “brain fog” really bothered me. My life is using my brain. It is unnerving to think that I might just have to endure 5 years of not being able to function? Is that really necessary? And how do I figure out that sort of life? And there is SO much variability. Some have awful recurrences and don’t do well. Others have terrible stage 4 disease and then completely recover. For me I have to know what all the possibilities are. And then I still have to live my life.

Are there any general lessons that I can share?

  1. Appreciate the normal. It is a gift to have routine and feel settled. Thank the Lord for a “usual” day.
  2. Be a calming presence. In medicine, the drama is intense in so many people’s lives. We should try to rationally and calmly help people navigate through it.
  3. Embrace speculation. I have tried to do this in my medical practice. When I could sense that people were guessing at the future, I would try to walk through all the possibilities with them. By naming them it makes them less scary. Then I could talk about what was likely so that we could be real. People can’t help but speculate and feel anxious. They might as well do it with some rational guidance and a dose of reality.
  4. The farmer.By my worry or mental energy I can’t make things happen. Like a farmer I just need to keep working and wait. It will come. And my worry doesn’t change anything. And there are lots of time in life where you cannot just fix everything and make the long-term plan. Oddly we rush to try to do this in medicine sometimes. Maybe it is ok to be the farmer waiting for the crop to grow.

So – how am I? Today I am pretty good because I have been off of mitotane for a few days! I have energy and my brain is working and I am not having dry heaves! I will restart the mitotane on Saturday and we will then figure out what is next. 

Categories
Updates on my health

My Cancer…

There will be more to follow on this but here are the basic facts and the story in probably too much detail. Feel free to skip over this if it is a bit too detailed. I promise to not be so verbose in the future!

  • 9/29/18: Sarah and I went golfing. On the back nine my right back started to really hurt. I thought I must have swung wrong or something…
  • 9/30/18: Not good. Lots of pain. Naproxen helped. Went to bed but couldn’t sleep and spent most of the night pacing. (Pacing felt better!)
  • 10/1/18: I wonder if this is a kidney stone! But – even if it was – treatment would be NSAIDs (ibuprofen or naproxen) and push fluids. I could do that. I still went to work. Fortunately clinic was quiet. Did you know however that it is hard to chart in Epic when your back really hurts. I closed my office door and tried kneeling to type. I think that was better. I almost went to the ED but felt maybe I was feeling better.  I promised myself I would go if it got bad again.
  • 10/1/18 (PM): Ok. I can’t sleep again. I am pacing again.  I will go. Sarah took me to Blodgett. It was not busy (cool!) and I knew the ED doc. It made me nostalgic to be back there! I could tell stories of all the patients I saw in the room where they put me! They put in an IV, drew labs, took a urine and did a CT scan. Yup. Hematuria present. The PA showed me my kidney stone on the right side. All good. Well – not completely. I am a young healthy man. I am not supposed to have things like kidney stones and nighttime trips to the ED. But maybe I don’t drink enough (I don’t). I can learn my lesson. Oh – and my pain was better by the time I got to the ED. I didn’t even need any pain medicines.
  • 10/2/18 (early AM): The ED doc came back. Gulp. Not good. He showed me the mass on the left side on the CT scan. That was NOT good. Quick run of differential diagnoses. None of them very good. Tempting to start googling… Probably not good either. Maybe get a contrast CT scan and make sure there is not more bad news? The ED doc asked if I wanted one. Yes! Next were emails – not going to be at work in the morning – and to my favorite surgical cancer docs. Oh – and to my favorite interventional radiologist. They are all amazing and really good. I am SO happy I can call for their help! 
  • 10/2/18: Did I mention that Dr. Lane, Dr. Chung and Dr. VanErp are all amazing! They all talked to me. We pulled together a plan. Labs to make sure this was not a functional adrenal tumor. Once we had labs then we could talk about biopsy vs. surgery. Leading possibilities were sarcoma vs benign adrenal tumor vs cancerous adrenal tumor. Radiologist that read the CT thought sarcoma. That didn’t sound good. 5 year survival in the 50% range. Not a death sentence but I would prefer better odds…
  • 10/2/18 (afternoon): Went back to work. How do you deal with something like this? I must admit I have learned a LOT from Karen W and Craig A. They do not know but they have been my heros in some ways. I have been so amazed and so pleased that they let us be a part of their illnesses. They have been open and honest in the midst of having to go through scary things. It has been SO good to have information. At least we were not left guessing.  I hope I could be as brave as they have been? I started telling people via email and in person. 
  • 10/2/18 and onward: I had to start learning what it feels like and what it means to be mortal. Planning to write in more detail about this later.
  • 10/4/18-10/7/18: We had planned some time off. Sarah and I had a plan for a trip around Michigan. Wow did we need that now! Have I mentioned how wonderful my wife is? She is amazing – my best friend – and a real support to me. We could be together and think or not think – and mostly just be.
  • 10/7/18: MyHealth showed me my labs were negative. This was a non-functional tumor. I emailed Dr. Chung. He answered me on Sunday morning! So good to have a plan. He told me he would operate that week and see me the next day to plan it!
  • 10/11/18: Surgery done. Taking mental notes on what it is like to be a patient (before 10/1/18 I had never even had an IV before!)  Interesting to see what it feels like. I plan to write more about this later.
  • 10/13/18: Sent home. Was I really ready? Ok. I could go home. But I started to notice chills and back was hurting on the left (along with incisions on the front). Not a big temp. 
  • 10/15/18: Fevers and chills and sweats and back pain were getting a LOT worse. It was time to go back to the ED. Sarah asked, “Couldn’t you have thought about doing this at 4 pm rather than 11:30 pm?” 🙂  ED found a renal infarct from the vessel the surgeon had to ligate to remove the tumor. They gave me morphine IV. That was a bizarre experience. I have no desire to repeat that one…
  • 10/17/18: Path had been read as benign on the frozen section but now came back as adrenocortical carcinoma. I definitely started reading now. Looks like I am a T2N0M0 (later read as a T3N0M0).  This means about a 50-60% risk of a recurrence. Recurrence is not good (= not survivable generally).  The hope is that either it never comes back or if it does at least I would have a window of normalcy for a few years.
  • 10/18/18: Tumor board recommended radiation. Really? I thought it was contained. Maybe the stats are real. Maybe I need to find more experts… Reading: Incidence about 300-500 cases per year. Few experts. MD Anderson has some stuff on it. I asked for help to figure out how to get to the experts who manage this all the time.
  • Fast forward now: Maz Hanna helped me find experts. Roundabout way. He found at expert in Boston. That expert told me about Dr. Gary Hammer at U of M. Dr. Hammer is a real guru (the guru!) I emailed him and he sent me his cell phone and then talked to me for a long time. Thank you Dr. Hammer! When we saw him however I got the sense that this is just how he is with everyone. I am thankful that as passionate as I am about heart failure, there is a doctor who is passionate about adrenal cancer. Anyhow – more details on all of this later but next – we go to U of M visit – long day – 14 tubes of blood –  and clear recommendation: radiation x 5 weeks plus 3-5 years of chemo (mitotane). Really good nurse practitioner and nurse coordinators helped explain everything. I have said it before but now I experienced it: The role of physician and NP and RN are all complementary. We each do some things well. Together we do it all very well.
This appears to be my friend for a long time (5 years!). I am warned that I will need to learn to live with potential of fatigue, lack of appetite, nausea, and “brain fog”.

So what does it all mean?

  • I had an incidental finding of a large adrenocortical carcinoma.
  • I had all evidence of it removed (clear margins).
  • I had a renal infarct and now have high blood pressure. That was unavoidable (other choice was to remove my left kidney).
  • I could be cured. I might have residual disease (microscopic) and so this might come back. Dr. Hammer thinks my odds are 50/50 or so but that U of M has experience with better outcomes with radiation and chemo up front. That is what we are going to do… 

What have I learned so far?

  1. My colleagues have been wonderful covering for me, taking on extra work and supporting me!
  2. People are really really important! The support I have been shown is amazing and can make me emotional. Thank you everyone!
  3. I love my wife! I knew this before but am so thankful to have her to go through this with!
  4. God is good. We can get into this more later. But for now – I am very thankful that I am not having to be anxious about my outcome. Live or die I come out just fine. I am really not trying to be arrogant and say that I am some super saint who can be so brave. I am not that brave. But I have a God who is gracious enough to give me what help I need to have faith. Or – as the expression goes – “To be willing to be held and not just hold on…”

Image of adrenocortical carcinoma from https://www.medindia.net/patients/patientinfo/adreno-cortical-carcinoma.htm