The Good Old Internet

Let me start this post out by saying I am fine. I am fortunate and grateful for that.

This year, for plenty of reasons, this time of the year has been weighing very heavy on my mind. For one thing, I should have been made more aware of the fact that I carried the gene, and then maybe I would have dealt with it sooner. That’s all water under the bridge, and I can let it go.

The Multiple Endocrine Neoplasia is rare. We have type 2A of that. Doctors around here don’t have experience with it. That’s okay, but they should be more honest about it. I remember asking my endocrinologist if he has other patients with it, and he said yes. I believe that was a lie. The same doctor wouldn’t answer questions besides “It’s good.” My noroepherine was a little high, but not high enough to indicate a pheochromocytoma. My big red flag with him was when he ordered a thyroid scan, I believe because of that.

The ENT that performed my surgery did not have a lot of experience with the medullary thyroid cancer either. He said he’s seen it in the past. The thing is, he also told me he consulted colleagues and knew what to do. I know he had my brother’s doctor’s phone number from Philly that also saw several other family members. I gave it to him when I told him I needed the genetic test instead of a biopsy because I thought the biopsy would be a waste of time and money. To me, it made logical sense, since I already had a lump and had a fifty percent chance of carrying that mutation.

The genetic test came back saying that I have the mutation. That meant I had a nearly one hundred percent chance of having medullary thyroid cancer, among other things. I should have had it removed when I was a teenager, but we didn’t know about it yet. I was already in my middle 20s when they figured out my mom had it. Funnily enough, she was dealt with at NIH. She also had a pheochromocytoma and spent years getting told it was in her head or getting treated for the wrong causes of her symptoms.

Several cousins and other relatives were seen there at that time as part of a study. I was not. Knowing what I know now, I really should have been, but we cannot turn back time.

I am fine to the best of my knowledge. My calcitonin dropped to undetectable and didn’t rise when I was tested. The lymph nodes they took from me were clean. I was bounced around between doctors after that because our health care system is so great. The doctor who performed my surgery stopped accepting my insurance. It should have been a requirement for him to do the follow-ups, but here we are.

Recently, I saw a cousin that lives nearby. He also carries the mutation. I asked him if he has an endocrinologist that knows what they are doing that is local, and he had the same experience as me. He’s going to go elsewhere to deal with that. I don’t really have that option since I do not drive. Such is life. His experience is the doctor not listening and ordering the wrong scans. Thyroid scan for pheochromocytoma symptoms…

I am actually a little older than my mother was when she had her pheo. I have not had symptoms, but it’s still weighing heavy on my brain. I know that the doctors around here most likely do not know how to deal with it.

In my research, I know now that our mutation is one with a lower chance of developing a pheo. But on the flip side, my mom had one. My cousin said he had two, but who knows if that was true? He overdosed. Two more relatives that are known to carry the mutation because their children have it both killed themselves long ago. That was long before we knew we had it. I cannot help but wonder if wacky hormones from a pheo were a factor in that, or even a cause.

It stinks having these rare diseases. They are not profitable, so there is not a ton of research on them. I guess the key is to be a fat smoker so you can get the common stuff like lung cancer and diabetes. I choose to be as reasonably healthy as I can, though.