A Paraganglioma Named Tomas

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.

7 thoughts on “A Paraganglioma Named Tomas

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  3. I found your site after looking through several google pages. I had an extra-adrenal paraganglioma and half of my left adrenal gland removed in May of 2008. Today I learned that the large abdominal mass near my 24 yr old son’s aorta is thought to be a paraganglioma. He also has some nodules on his lungs. He was brain damaged at birth; he looks normal but has short term memory issues and his comprehension ability is around a 5th/6th grade level. I’m not sure he appreciates the seriousness of his diagnosis. I am so glad to find your site. When I was diagnosed there was not a lot of information available but I am glad to see that knowledge has increased since 2008.

    • Tammy–Please check out the resources above. There is information and support available for you and your son. Have you considered doing genetic testing? I moderate at the Facebook site and I know there are lots of supportive people who have dealt with some version of pheo/para stuff.

  4. Hi! I stumbled upon this blog, and it’s like I am reading about my own life (kinda, sorta..). I am 29 years old and was just very recently diagnosed with a paraganglioma (jugulare), Although not pregnant, I am 7 months PP, and the doctors suspect pregnancy (I’ve had 3 in the last 6 years) may have caused this tumor to grow a bit faster than usual. My doctors have chosen to try treating with radiation first, but I’ve been warned that surgery may still be in my future. RIght now I am just researching and surrounding myself with support as go on this crazy journey of dealing with a rare head tumor.

    • Hello Cass…I also have just been diagnosed with a paraganglioma jugulare! I cannot believethat I have just stumbled somehow across you and this web site..??? I live in NYC and I am overwhelmed with confusion..an understatement! Would it be possible to communicate with you by personal email…as I doubt that I will ever find this site again. I AM NOT A TECHIE! Or telephone? My email is slmaspen@aol.com…tel: H 212 737 0848 and cell 917 952 8499. I am hoping that we can be of help to each other in finding h

      • was unable to finish….I hope that we can help each other by sharing information.
        I wish you good health and I hope to hear from you soon. All the best…and thank you for your time and considertion, Sandra

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