We Finally Know What We’re Dealing With: An Update

It’s been about 18 months since I found out the biological marker for my medullary thyroid cancer was highly elevated and climbing. Its been 15 months since a suspicious mass was seen on my right adrenal bed, completely by accident.

I’ve seen several doctors in the months since then, searching high and low for answers and treatment. They have all been bewildered. I’ve watched them squint their eyes as they flip through the notes and images. It’s like they are trying to decipher a  language they have never seen before. Their interpretations lacked confidence and their conclusions were often conflicting. I would always leave these appointments with more questions than answers.

What is going on with me?

Today I met with a team that was able to spot my tumors with eagle like precision. They had the technology, and expertise. We finally know what we’re dealing with, but as with every appointment I’ve ever had since diagnosis, nothing ever goes as expected.

Today I got answers.

Yes, there is a tumor on my right adrenal bed. Yes, it is a pheochromocytoma. Even with their cutting edge imaging technology, it is unclear if this is one big tumor or a cluster of 3 tumors. In either case, surgery is advised. There was also a small mass on the left side of my hip. This mass responded to the 3 radioactive contrasts in the same way the pheo did. This would suggest it is also a pheochromocytoma. There were also at least two small masses in the upper part of my chest. These are most likely metastases of my medullary thyroid cancer, and my blood work would suggest the same conclusion.

I will come back to the National Institutes of Health for surgery. This is good, as surgery is my best chance for “cure.” I will meet with the surgical team and discuss the details with them. As for the medullary thyroid cancer, I will have to seek a specialist in this cancer to address this issue.

Overall this was a very positive meeting. The doctor and his team were incredible. I received straight forward, experienced answers for the first time ever. The outcome was not what I anticipated, but of course, that’s how the rare life goes.

I’m thankful that they were so thorough, and found tumors that could not have possibly been found at any other facility. What they discovered here at the NIH will have a positive impact on the outcome of my future.

Michelle