As I mentioned, it was very soon after getting settled back into bed when endocrinology came in. As with all the doctors, my hospital endocrinologist was as sweet as could be. I sometimes replay in my mind how I could have been given this news differently and am thankful for how Dr. Genere handled it.
"......more importantly I am here to talk about your PET scan and we found the problem...….hormone producing neuroendocrine mass on thymus...very rare.....cancerous.....benign.... meet with cardio thoracic surgeon.....THIS IS THE CAUSE of your SIADH"...... Finally we had an answer! I think I actually smiled, felt happy, or perhaps relieved. I don't know all I know was that we had an answer.
The PET scan, as mentioned before, was a very specific, very expensive, not often used scan that was used to identify hormone secretring neuroendocrine tumors and it found one in me. Dr. Genere spent about 35 minutes with is and as she was leaving, Dr. Shafay also came in to discuss the results. He pulled up a chair sat down and answered all our questions, he too sat with us for close to an hour. He explained that the thymus gland was part of the development of the immune system as an embryo and that it usually shrinks up and disappears as we get older. He also explained that neuroendocrine tumors are not generally seen in the gland but that I clearly had one. He reassured us that no other spots lit up on the exam. As he was leaving, a cardiothoracic resident came in to show us the tumor and explain what there role in this would be, which was obviously to remove the damn thing. Only tricky part was that it was very close to the heart but they were confident that this could be done with VATS procedure and not have to crack ribs or chest. At 6:45pm my cell phone rang and it was Dr. Natt from the clinic, she just could not believe that our "Hail Mary" attempt to find the cause actually found the cause! As empathetic as she was, she was so relieved that my SIADH would finally be resolved.
The rest of the evening held many different emotions, relief, fear, and joy when my sister finally arrived! Yup she went Tampa---Baltimore---Rochester, NY----Chicago-----Rochester, MN! But made it there just as all the doctors left my room — Perfect timing.
One of the unique aspects of being at mayo is the collaborative care approach they take. As I mentioned before Dr. Shafay was my team lead and I had other specialists involved and now we added thoracic surgery. This team actually sits down and meets to talk about the patient and not just once , everyday, multiple times a day. And as things happen, the team talks again. There is not a moment that one member doesn't know whats going on, they are all on the same page and work closely together to provide the best outcome possible.
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| ADH secreting neuroendocrine Thymic Carcinoid |
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