glomous jugular tumors

utahblaine

anyone else had this type of cancer.?
this march had another tumor extracted out of my neck on the jugular vein.?
and would also like to talk to others who are living with feeding tubes
im 13 year cancer servivior and had feeding tube 13 years can offer support and information currently hold record in wa state for longest tube left in without being replaced.
4 1/2 years going in this week for ppost removal apt and then the big date to have old one ripped out and new tube reinserted.

TereB

Hi,
I am a glomus jugulare tumor survivor with many mets. It is rare so it is hard to find other people with the same thing. Now they call it malignant paraganglioma. I had surgery for the primary one but it grew again as these tumors tend to recur. I've had radiation for other mets, including one on neck. I've been lucky, never had to use a feeding tube.
There are other people with different cancers who had to use a feeding tube. Will you always have to wear a feeding tube? Hope all goes well with removal of old tube.
All the best,
TereB

kate100

TereB said:

Hi,
I am a glomus jugulare tumor survivor with many mets. It is rare so it is hard to find other people with the same thing. Now they call it malignant paraganglioma. I had surgery for the primary one but it grew again as these tumors tend to recur. I've had radiation for other mets, including one on neck. I've been lucky, never had to use a feeding tube.
There are other people with different cancers who had to use a feeding tube. Will you always have to wear a feeding tube? Hope all goes well with removal of old tube.
All the best,
TereB

Hi -
Does anyone else besides myself and Jim's wife have malignant abdominal paraganglioma? I would like to talk with you. I hope this message finds you all well.
Kate