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Forum Name: Ear Nose and Throat

Question: Castleman's-Just cause I don't know where else to put it!


hannahgrace - Wed Feb 01, 2006 2:06 pm

I'm 19, I just had my 4 week followup with my surgeon after having a Lymph node sized slightly larger than a hard boiled egg removed from the side of my neck. The surgeon informed me that I'm the first positive case of Castleman's Disease he has ever seen. He asked me if I had any questions, and of course, at the time I couldn't think of anything, but now...! My biggest concern is that now that the Lymph node has been removed and studied (negative for malignancy, definitely positive for castleman's), the surgeon thinks I'm totally cured (which, I hope he's right!), but should we be so sure that I'm out of the clear? Should I have a full body scan to make sure there aren't any more abnormally sized Lymph nodes? And are scans something that should be done yearly to check for recurrence of the disease? I don't want to sound like a pessimist, I certainly don't want to have to go through any more surgeries, but I just want to be sure... And I feel weird about asking these questions to my doctor out of fear of looking like a hypochondriac or whatever. Another thing, 1 1/2 years ago I was diagnosed with extremely low iron levels with no known cause. It took over a year of high dose iron tablets to get it back within the normal range. Could that have been from the Castleman's Disease? I think that's all the questions I've got for now. If anyone has any answers, I would so greatly appreciate it!
Theresa Jones, RN - Thu Feb 02, 2006 12:49 pm

Hi hannahgrace,
Treatment (surgical removal of the Lymph node) of Unicentric (only involving one Lymph node) Castleman Disease is typically considered curative. Diagnostics such as a chest xray, CT scan or MRI, would identify if there is any Lymph node involvement elsewhere in the body. Low iron levels may be associated with lymphoproliferative disorders. Keep in mind that the prognosis for Unicentric Castleman Disease is very good. You may also view the link I inserted in your other post as it contains some very good information. I again, am glad to hear you are doing well :)
Click here!
Sincerely,
Theresa Jones, RN
AndreaIrwin - Fri Feb 03, 2006 12:56 am

Theresa Jones, RN wrote:
Hi hannahgrace,
Treatment (surgical removal of the Lymph node) of Unicentric (only involving one Lymph node) Castleman Disease is typically considered curative. Diagnostics such as a chest xray, CT scan or MRI, would identify if there is any Lymph node involvement elsewhere in the body. Low iron levels may be associated with lymphoproliferative disorders. Keep in mind that the prognosis for Unicentric Castleman Disease is very good. You may also view the link I inserted in your other post as it contains some very good information. I again, am glad to hear you are doing well :)
[url=http://www.
thedoctorslounge.
net/forums/viewtopic.
php?t=10277&start=15]Click here! [/url]
Sincerely,
Theresa Jones, RN


HI,
I have read tons of replys from you and you seem very much educated with lymphnodes. I have posted some problems and I have had No replys, it hasnt been very long since I posted, I am just really anxious. would you please help me with my problem??, I guess just go to what I have posted, thank you so much.

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