If you’ve been reading recently you’ll notice that there are occasional references to me having tumors and crazy health issues and this weird word: Paraganglioma.
If you want the WHOLE back story on that, check out this blog: Adventures with Tomas the Tumah. It’s a journal I kept to keep friends and family updated on the journey.
The short version is this: In June of 2010 when I was about 16 weeks pregnant with my sweet littlest girl, I found out I had a tumor. It turned out to be a very, very rare tumor called a Paraganglioma. Paragangliomas are Neuroendocrine Tumors that are associated with Pheochromocytomas. Basically it’s the same type of tumor as a “Pheo” but outside of the adrenal gland. Mine happened to be on my Carotid Body.
These tumors are complicated boogers that when found on the adrenals or in the abdomen can cause hormone secretion causing symptoms like spiking blood pressure, rabid heartbeat, excessive sweating and more. When they’re in the head and neck they don’t secrete these hormones and often the only symptom is a lump (that was the case for me). There is some controversy on whether to call them ‘benign’ or ‘malignant.’ My medical gurus have indicated they’d just assume call it ‘cancer’ from the get go with the caveat that it is a generally slow-growing kind with a lower than normal risk of spread in most cases. It CAN spread and when it does, because of the rarity, there are limited options for treatment (though there ARE options and many long-term survivors even in cases with extensive spread). Paras and Pheos can also, at times, be caused by a genetic mutation which can increase the likelihood of a person getting more tumors on down the line.
Since I was pregnant we couldn’t do a whole lot with it until after the baby came. We ended up going 3000 miles–all the way to the National Institutes of Health–to have the little booger removed as part of a protocol with Dr. Karel Pacak who is one of the leaders in research on Pheochromocytoma and Paraganglioma.
As for me, I’m proud to be a survivor of this “zebra” of a tumor/disease. Slowly we’re getting questions answered. We recently found out that a nodule on my other carotid that was believed to be another tumor is most likely a normal lymph node. We are SO GRATEFUL for that news. So far all of the genetic tests that I’ve had have come back negative. Still, no matter what I’ll need follow-up for the rest of my life and it’s a permanent part of my journey–not the total sum of it, but a prominent part nonetheless.
Though I haven’t quite figured out what God is telling me through this part of my story, He has taught me and is teaching me much through this journey, nonetheless.
For those of you who may have found this website while looking for information about Paragangliomas and Pheochromocytomas here are some places to go for really good information:
1. The Pheo Para Troopers--A patient initiative offering support and resources for the patients, by the patients. Also check out the newsletters which are chock full of info.
2. The Pheo Para Alliance–This is an organization with collaboration from some of the leading researchers of Pheo-para. Up-to-date information and an expanding global directory for where to seek care.
3. The Pheo/Para Patient Facebook Support Group–This is a Facebook group that is closed for patient privacy. It’s active and flourishing with a group of people committed to a supportive environment and accurate information.