My follow-up with Gandalf has finally arrived. Gandalf is a renowned endocrine surgeon who got me in the hands of the thoracic surgeon and cleared for surgery.
I was really looking forward to this appointment, partly because I had a tonne of questions and partly because I wanted him to see how much better I was and to say thank you for pushing forward with my case in the face of some uncertainty regarding the CT scan. After giving him a quick update, we launched into my questions. Here were the questions and his responses.
1. What should we make of the pathology report? He told me the thoracic surgeon let him know I wanted to send my slides somewhere else for a second opinion, so I asked him what his thoughts were on the pathology. He agreed with me that a second opinion was a good idea. For the record, so does the Wizard. He agrees it would be much better if we had a “smoking gun” and that we should try and get one, especially since the surgery does appear to have done something. Furthermore, he had thoughts on where we should try and send it and even offered to help facilitate the process. I JUST LOVE THIS DOCTOR. Stay tuned on this one.
2. What does Gandalf make of the fact that some symptoms are gone, some are better, and some are unchanged? The most likely outcome is the thymus had to go but we didn’t get all of the carcinoid. The plan from here is to do another Octreoscan and hope something shows up. He could clearly see by observing me in his office before and after surgery that, just as I report, some of my symptoms were gone and that the flushing had changed but was still there. He didn’t have to take my word for it, he could see it all for himself.
I mentioned to Gandalf at this point that the bone doctor did order an Octreoscan – did they coordinate on this? It turns out it was news to Gandalf that I had seen the bone doctor, so I filled him in on what happened at my last appointment, including my parathyroid labs. All of this came as a surprise to him and he seemed pretty intrigued as he looked at my labs. I also showed him the same picture of my MRI and he had some questions about what the radiology report had said. I relayed the information from the radiology report to him as well. He paused and asked me if the MRI was conducted at his hospital. I was relieved to tell him that it was not.
3. Now that we talked about the parathyroid labs, what did he think about them? He didn’t say I had hyperparathyroidism, but this was clearly on his mind, as he told me we need to follow the trend in the labs, that some of my other labs were also consistent with hyperparathyroidism and furthermore that hyperparathyroidism could cause “brown tumors” in bone as well, which he speculated might be what the bone doctor is looking for. He also told me that the bone doctor was the perfect person to be seeing for these issues and that he would be coordinating with the bone doctor going forward. Gandalf does parathyroid surgery among other things, so at this point I can’t help but think he will be handling one for me in the not too distant future. But we shall see.
4. The other big issue unresolved issue on my list was my GI problems. I have been hoping it was just the thymic NET preventing my food from getting completely digested, but this doesn’t seem to have improved since surgery. As a result, I am getting increasingly worried about my pancreas, which is another common location for NETs. Given the pancreas plays a big role in digestion, this wasn’t a crazy place for my mind to go. Pancreatic tumors can be difficult to see on the sorts of scans I have already had and I knew that the “gold standard” for imaging the pancreas for MEN-1 patients was an endoscopic ultrasound. So instead of beating around the bush, I just flat out asked if he would refer me for one. He asked me what I had tried at home to fix my problems and I told him the truth – not much. I didn’t really know what to try and given all the other problems I had been actively trying to address, I had put this on the back burner. He asked me to try and add more fiber (Metamucil) for a month but then said if it didn’t work within two weeks it probably wasn’t going to work. If adding fiber didn’t fix the problem, he would refer me for a GI evaluation. This seemed very reasonable to me. He told me that, in fact, he had a MEN-1 family visiting from out of state this very day and that an endoscopic ultrasound was part of the work-up these family members had today as well. So we were on the same page yet again. I really will feel much more at ease once we take a look at my pancreas, one way or the other, so I am glad he is open to it as well.
5. Finally, he asked us if we had any other questions or concerns, so M brought up the fatigue. I still require a solid 12-14 hours of solid sleep to feel decent during the remaining 10-12 hours in the day. When M told him that it was truly shocking to see how deeply I slept during the day, he simply said “I don’t think we got it all,” referring to the thoracic surgery I had last month. This was our fear as well.
Gandalf gave me his email address and we agreed to stay in contact via email while the various issues get handled. There are several irons in the fire now – the second opinion on pathology, the Octreoscan and whether there is NET remaining after my thoracic surgery, the masses in my sacrum, my parathyroid labs, and likely a GI evaluation and endoscopic ultrasound of my pancreas. Hopefully these irons will allow us to get to the bottom of most of my remaining issues. The only other item left on the agenda is my abnormal pituitary labs and I will be following up with the Wizard on those and will be reporting back on this soon.
It’s still a long list, but we are getting there.
a tale of two tumors 