I have been on a quest since last July to get a second opinion on my thymic pathology, but it hasn’t been totally clear who (and how!) to get someone to look at it. But for some random reason one day, I did a search of clinical trials relating to pathology and stumbled onto a trial that sounded perfect for my lump of tissue: a tissue procurement trial at the National Cancer Institute that was collecting specimens from people with lung/thymic malignancies and then collecting natural histories of the patients (this trial is not for treatment itself, just to follow the course of the disease)! I right away sent off an email to the oncologist running the trial, explaining my situation – I had symptoms and an Octreoscan suspicious of a thymic NET, had surgery, got quite a bit better, but nothing was found in the pathology. I told them I realized I might not fit their criteria, as I am not a pathology confirmed NET, but boy would I love to give them my tissue if they were willing to take a second look.
A few days later, I received an email from a clinical thoracic oncologist at the NCI who specializes in thymic malignancies. He saw my email and reached out directly, telling me that they were willing to see me in clinic and evaluate me, regardless of whether they admit me in the study. I just had to send my scans/operative reports/pathology reports and make an appointment to come to Bethesda. This was much better news than I had been hoping for and I was of course happy to do it. It turned out that I was already going to be in DC for a work conference for almost an entire week in the near future and so I decided to try and be efficient by combining my trips.
The timing worked out well. I was able to set things up so that I could work for two days, do medical stuff in the middle and then go back to work at the end of the week. I had been trying to keep work and this medical stuff completely compartmentalized as I have zero idea how to integrate the two in my life (and I am still not sure I want to). So, aside from a couple of people at work that were close to the situation, no one had any idea I would be doing anything other than working on this trip. And for now, I planned to keep it that way.
Lucky for me, my ever-helpful SIL was nearby and able to accompany me to the NCI when the day of my visit arrived. She was also able to stay with me the night before and after the trip. The night before and the morning of the trip, I was a little nervous. It is still very hard to fight the fear that I am not going to be taken seriously – I really feel scarred by my many bad prior medical experiences, despite the fact that these experiences are few and far between at this stage in the game. So I always go into doctor appointments, even with doctors I know and trust, fearing I am going to be turned away. I just kept telling my SIL that my goal was to get them to take my tissue. If I manage to accomplish this? I will have met my goal. But I was worried I came all the way here for nothing.
I have particularly mixed feelings about the NIH. I was evaluated at the NIH for MEN1 in January 2015 and remain extremely grateful that they admitted me to their study. While I was there, they did a bunch of scans and the Octreoscan at the NIH was where the potential problem with my thymus was located. And it would have been almost impossible for me to get my thymus out as quickly as I had without that scan. That’s on the positive side. On the negative side, I had less than favorable experiences with some of the doctors that had evaluated me at that time. And despite everything that has happened over the last few years, they don’t believe I have MEN1 and won’t follow me further, unless my hyperparathyroidism comes back. But this is a new day and a new set of doctors.
My SIL and I go through the usual routine – meet with the fellow, go through a detailed history and then see the team. And what happened next shocked both of us. The two thoracic oncologists said, with zero hesitation, that I had a thymic NET. That no other explanation made sense. Between my symptoms (and I had brought pictures of my flushing episodes as well as office notes where Gandalf described in detail the sudden onset and appearance of an episode he witnessed), my Octreoscan and the fact that the coughing and wheezing stopped completely and abruptly after surgery, there was nothing else it could be. There was no alternative diagnosis on the table. This is what I always thought. But it is a hell of a lot different hearing it inside my head and hearing from a doctor.
My diagnosis was “thymic NET unless proven otherwise.” Someone actually said it out loud, with no other qualifiers.
This is important because without a diagnosis, it is hard to get treatment or be followed. And this is the best part of the whole meeting. These things have relatively high recurrence rates and so they want me to come back for Octreoscans and CT scans of my chest/abdomen/pelvis every 4-6 months for the foreseeable future and then annually indefinitely. And of course, since I still have symptoms, this has been a major concern for me as well. I am very concerned I either have another NET somewhere, that the NET I had has spread, or that there is still a piece of tumor hanging out in my chest somewhere. And all three possibilities were also acknowledged by these oncologists.
The NCI is going to obtain ALL of my pathology – pituitary/parathyroid/thymic and have their pathologists review all of it. They were not overly surprised by my negative pathology, they have seen this happen before. One of the oncologists said that this stuff is so rare, there is a chance the pathologist didn’t even know what he was looking at. The other possibility, of course, is that the tumors were so small they would be easy to miss – which sounds so crazy, but again with this disease it happens. In any event, they couldn’t guarantee they would find anything, but would take another look. Goal met and exceeded.
We also discussed another strange new symptom that I have developed that I thought was likely unrelated but worth mentioning just in case. They told me, repeatedly, I needed to go home have it evaluated. They wanted me to get a specific set of tests and to send the results back to them. I will come back and talk about that in another post.
As you can imagine, this was a very positive development in some respects but scary in others. I feel a bit like I had a crazy JFK conspiracy theory and just discovered it was true. I always believed this was my diagnosis, but not having it confirmed took the sting out of it. I now can let go of the fear that I might have had a thymic NET and wasn’t being followed and replace it with the fear that I had a thymic NET. It is less hypothetical and more real now, even though nothing has actually changed inside my body.
I was supposed to attend a client’s cocktail party that evening for work with a few of my colleagues, but I just couldn’t do it. I was feeling very shell shocked. I didn’t cry and wasn’t upset, but felt sufficiently close to that edge that a glass of wine and the wrong comment could get me into that territory and a work function was not the time for it. I had sent an email to my colleague, letting her know that I wasn’t going to make it and why and her response was “Where are you? I want to hug you.” and even that forced me to take a few deep breaths and blink away tears. So my SIL and I decided to grab a bite at a restaurant close to the hotel where we wouldn’t run into anyone. I was going back to the NCI for my scans the next day and would then close the medical compartment and open up the work one again. But until then? I was living in the not-suitable-for-work box.
Our plan sounded great until we walked into the restaurant and discovered the cocktail party was being held in the same place we had decided to come for dinner. And of course, there is a group of my colleagues, looking at me with a confused expression and waving me over, while I stand there trying to smile and shake my head no. The colleague I emailed came over and told us to come join them. I introduced my SIL and said this was an accident, we weren’t here for the party, we were just trying to grab a quiet dinner together and unwind after a stressful day. And so she sent us on our way. But as she turned to walk away, she grabbed both my shoulders and gave me a hard kiss on the temple. It makes me cry just sitting here writing about it, I don’t know why. I can’t quite explain in words how it felt for my two worlds to collide – but something about that encounter had me pushed me to the edge of a complete meltdown.
And the meltdown arrived the next morning, when I had a good long cry before returning to the NCI for the first round of CT scans. I still felt pretty frazzled and, after getting caught in the rain on the walk back from the subway to the hotel, was not up for the evening’s planned work activities. I had received several emails from colleagues in other offices that wanted to catch up while we were all in town, and ran into two more colleagues I wanted to see in the elevator, but claimed I had an upset stomach and promised to see them tomorrow. I had a quiet dinner in my room, watched some truly wonderful/terrible reality TV, and closed the sick box. Friday morning, I woke up in my work box and picked up where I left off on Tuesday.