fairly scared-- need info

sherlock · New User Joined: 01 Apr 2008 Posts: 2

Folks,

I'm new here. Had an enchondroma in my hand, removed with good margins and grafted, when I was 27. It reoccurred 9 years later, and received the same treatment. Three years later, it was back again, this time extruding into the metacarpal joint. Excised and grafted again. When it came back for the fourth time 6 months later, I self-referred to an oncologist, who said it should be considered malignant based on its history alone. He recommended amputation, which was done 9 years ago.

Fast forward to now. I had an episode of nausea and vomiting that landed me in the hospital (out of town, no less) with dehydration last February. They did an abdominal CT and found a 2.5 cm mass on my adrenal gland. I told my internist about it, and he just said I should have a repeat scan in 6 months.

Then I went in for my annual with my oncologist. I took the CT results, and mentioned while I was there that I've been having this weird flushing and GI problems. He took extra blood, and last Thursday his office called to ask me to come in to meet with him next week. Unable to tolerate the wait, I asked them to have him call me, which he finally did today (I've been going crazy. I don't wait well.)

He said my chromagranin A was elevated. I gather it is a marker for pheochromocytoma. One study said it was 83% sensitive and 96% specific for the diagnosis of pheochromocytoma. I understand that would be an adrenal tumor.

He didn't offer any further information, other than that he needs a 24 hr. urine. To my surprise, I didn't ask a single other question. I think I just kind of froze. I'm very disappointed in myself, because I can usually get into an action plan in times like this. This time I couldn't even speak.

I won't see him for another week and a half, and this is really bothering me. The more info I hav the better off I'll be. Do you know anything about this disorder? Is the test really that specific? Why would he want a 24 hr urine? How long could this work-up process take? If not a pheochromocytoma, what else could it be? If it's a pheochromocytoma, is it necessarily malignant? What's the treatment?

Sorry-- I'm very frustrated by the long wait and my own inability to ask questions when I had him on the phone!

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 648 Location: UK

Hi - it is really hard to wait on doctors and test results.

This is the Mayo Clinic's account of the treatment involved in pheochromocytoma. If you track back on the site, it gives you in depth information on the condition.

http://tinyurl.com/33k83q

brainman · Posted: Thu Apr 03, 2008 7:15 am Post subject: Re: fairly scared-- need info

sherlock, I am so sorry about your cancer. Do you know anything about what stage it is?

It is very common for people to forget important questions when they go to a doctor. For me, I can be sitting there with a head full of questions but I the doctor walks in, the questions seem to fly out of my mind. I started early on to keep a medical history journal where I write all my questions. That way, if I do forget, my journal reminds me. At first, my doctors just thought is was funny; now they come in asking "Do you have any questions in your notebook?" Very Happy

He wants a 24 hour urine sample because of the course of 24 hours there is a fluctuation in the chemicals in a person's urine. He what to get a good representative sample over a 24 hour period to make sure he has a good understanding of your overall health as show in your urine.

I have never hear of a pheochromocytoma so I do not know if it can be either malignant or benign. All I can tell you is that the "cytoma" ending mean pheo=embrionic, chromo=color or something to do with the chromosomes, cyto=cell, oma=tumor or swelling: all together it tells me that you have a tumor of a certain type of embrionic cells. A little greek I picked up will in college Wink

.

Check out the National Cancer Institute's website: http://cancer.org . That is where I always start.
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sherlock · New User Joined: 01 Apr 2008 Posts: 2

for the reassurance!

Re stage of the bone tumor-- they never told me. I had the feeling it was low-grade, though, or there would have been chemotherapy.

RE this adrenal thing, all I know is that it's a mass on my adrenal gland that's putting out some kind of hormone that's not supposed to be there.

Ah, well. I will use my remarkable powers of repression for a good cause....and manage to wait till I see him. Better believe I'll have a list of questions then!

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 648 Location: UK

Good luck - let us know what happens.

In · Posted: Fri Apr 04, 2008 5:44 pm Post subject: Re: fairly scared-- need info

Hello, sherlock.

I'm sadden by reading your post- BUT also proud. You've been through alot. But still kicking butt.

Do what Jim, says and keep a list of questions, handy to have. Have you got someone to go with you into Dr App. Sometimes another person can support and take it all in better. That way you can quiz your friend later, if you forget or need to know their input.

Good Luck, and hope things arn't as bad as your thinking... Confused

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