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Thursday, June 22, 2017
Head and Neck Cancer
Lymphoma - Castleman`s Disease?
In 2001, 2005, 2007 I have had lumps removed from the right side of my neck (beginning with lump right at jawbone under ear - next included parotidectomy - next a little more forward). Each time surgeons felt it was lymphoma until they all came back benign. My ENT seems to feel it is Castleman`s. My Oncologist (my ENT referred me to him) seems to be worried about Lymphoma. Just since May (my last surgery) I have developed several small lumps down the lymph nodes running down my neck - still on the right but much farther toward the back of my neck and even one down near my clavical. The Oncologist wants these lumps biopsied.
I guess I am just confused - both by the lack of definative diagnosis and - how many more times do I submit to surgeries before those procedures leave me with other problems? I understand that it is possible for these benign lymph nodes to "transform" into lymphoma so I understand the need to stay on top of this but is a biopsy really necessary or are there other tests that might give us some answers.
Also, I was diagnosed several years ago with Polymorphus Light Eruption. There was no actual testing but I do know I break out after exposure to sun. However, my back and upper arms are broken out year round. The reason I bring this up - I wondered if my lymph node issues could be related? I know nodes can sometimes form lumps when infections are present. Although I have no infections, could the skin disorder cause my lymph nodes to react?
Thank you for your attention.
This is a difficult situation.
This may be localized Castleman's disease. The etiology is unclear but may be viral. It is important to rule out HIV infection and I am sure that your medical oncologist has ordered tests in that regard. It is definitely important to rebiopsy these lesions because of the risk of developing lymphoma. In addition, if the disease is limited and localized, surgical removal is often curative. If the disease is more extensive, systemic therapy can be used. Your medical oncologist can inform you of clinical trials available to manage this rare condition. I do not believe this is related to your light sensitivity.
Pierre Lavertu, MD, FRCS(C), FACS
Professor of Otolaryngology-Head and Neck Surgery
School of Medicine
Case Western Reserve University