Life Without Pheo? A Post Surgery Update

It’s been 2 months since my surgery. For anyone just tuning in, I have a genetic condition called MEN2a. I’ve had it my whole life, but wasn’t diagnosed until 2011. Since then I’ve had six surgeries related to MEN2a. Most of them have been to remove pheochromocytomas. 

This surgery was different. This time I wasn’t messing around. I went straight to the leading experts in the country, at the National Institutes of Health, so that I can maybe have these mean little tumors gone for good. I was naive in the past. After every surgery I foolishly thought I would be cancer and tumor free. I’ve come to realize over time that it’s not so easy. Unfortunately MEN2a will be a part of my life forever. The good news, both pheochromocytomas and medullary thyroid cancer tend to be slow growing tumors relative to other cancers. The bad news is that both have very few effective treatment options. The typical chemo and radiation are ineffective with these, and would do more harm than good. Really the most effective treatment is surgery. It’s traumatic, and it’s hard on the body, but as long as my tumors pop up in operable places, that’s the best case scenario.

So are my tumors finally gone? 

I’m not going to jump any conclusions like I did after past surgeries. God willing, all the pheochromocytomas are gone for the time being. That was the goal of the surgery. However, as has happened in the past, they can grow back. What I can say, is that I’m feeling very well. I haven’t had any of the painful pheochromocytoma symptoms. My heart isn’t acting crazy lately. My 8 inch abdominal incision is healing well and I’m in very little to no pain. I can’t express what a good feeling this is!

Will this be my last surgery?

Probably not. I still have medullary thyroid cancer metastases. The plan currently is to return to the National Institutes of Health for further evaluation and to come up with a treatment plan. I really don’t know how they will choose to handle this. The good news is that at this time, the MTC isn’t causing any symptoms. I can sort of trick myself into forgetting it’s there. 

I will go back to NIH in 3-6 months for more testing. In the mean time, I need to follow up with an endocrinologist locally. This is not an easy task for someone like me. I can’t see just any endocrinologist. While they are all technically “specialists” there are very few that have expertise in a condtion like MEN2a. To further comlicate things, there is literally no one else with the combination of rare conditions I have, plus using a treatment method as unheard of as the cortisol pump. I’m deep in uncharted territory here. I’ll have to settle for a doctor that is experienced with most of these conditions, and willing to learn more about the rest. Currently, I’m scheduled to see an endocrinologist at UT Southwestern. Unfortunately, they do not work with my insurance company, and my primary doctor was unwilling to help me work out a solution with them. So it looks like I will be paying out of pocket to be seen and treated here. Yikes! I have no idea how I’m going to afford it, but if God guided me here he will make a way.

💕Michelle