Carotid Body Paraganglioma

[Treeby]

I'm 29 years old. During my routine OB visits for baby #3, I pointed out what I thought was an enlarged lymph node. The 'bump' stayed large for longer than expected and so an ultrasound was performed. The diagnosis after the ultrasound was a Carotid Body Tumor or Carotid Body Paraganglioma.

My husband is in the military so we use military insurance. This means the coverage is great, but it's really, really hard to be picky about doctors.

I'm grateful to find that paragangliomas and especially Carotid Body ones are highly treatable with surgery. From my research though and some conversations on the phone and via email with one of the top doctors in the country dealing with this tumor I have concerns that it may be related to a genetic mutation that would predispose me for more of this type of tumor down the line (they are slow growing and could appear in a couple of years or many, many years from now). My age and the location on the carotid body are red flags for this. If that is the case, and even if it isn't I have concerns about recurrence or metastases down the road. The surgeons that I've talked to thus fa, aside from the specialist, all look at me as though I'm chasing zebras when I mention this. I think I want more information and I think, though it's on the other side of the country from me, we're going to go with the specialist for treatment.

The good news is that because this is relatively slow growing, I can wait until after baby comes for surgery to remove this.

That's my story in a nutshell. I would love to hear from anyone who has dealt with a paraganglioma, or even a pheochromacytoma as, from my reading, these types of tumors are very similar in nature (though it should be noted that my para is the kind that does NOT secrete catecholemines, at least as far as we can tell at this point).