For people who are new to the world of paraganglioma and pheochromcytoma the information can be pretty daunting. There is no much out there to sort through, not all of it is accurate. That is why we started the Paraganglioma and Pheochromocytoma Links to Information page. This page has a collection of articles, both simple and indepth, that are written by experts on Paras and pheos.
Here is a quick simple guide to paras and pheos. I will add references to each of the comments soon.
Paras are tumours of the nervous system and adrenals. In the adrenals they are also known as pheochromocytoma. There are generally 2 different types: sympathetic (may make too much adrenaline or noradrenaline) and parasympathetic.
When they appear on the nervous system (Pretty much anywhere in the body) they are considered benign, even if you get lots, like me. Each one of mine is considered a primary tumour.
If they spread to organs (not adrenals), bone or lymph, then they are considered to be malignant. You can have "malignant-like" paraganglioma (ie: they grow into the surrounding cells and tissue) without them actually being malignant.
Science is still trying to work out the difference between a benign and malignant para, as well as what triggers paras to spread.
Paras and pheos should NOT be biopsied. Biopsies can cause excessive adrenaline and can cause the tumours to seed.
Surgery is the best option. Sometimes they are inoperable, so then they will use nuclear medicine like MIBG or Lutate and other Octreotate scans.
Radiation and chemo can be a bit hit and miss.The tumours are fairly resistant to the both, and they generally cause more damage than not. Chemo and radiation after surgery to get metastases has not been proven to e effective. In fact, most specialists who have been dealing with paras for a long time will avoid these two.
Radiation causes scaring and has a limited number of times that it can be used. Best to save it for when it is really needed.
