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Lymphoma Scare.
Hello,

I'm a 24 year old girl and in January I had an FNA for a suspicious lymph node that I've had for years. Have a couple swollen lymph nodes on one side. I have a rare immune deficiency called hyper igm syndrome. It turne out that it was benign later, but originally the FNA said it was malignant.

I did a PET scan and CT and there was uptake all over my neck, bone marrow and in my lingual tonsil at base of tongue. Did 2 biopsies and it came back benign. Head and neck surgeon wants to monitor in 3 months.

Oncologist told me about the uptake in the lingual tonsil and is referring me to an ENT. I'm worried because I've never had anything in my throat ever and it causes me tickles in my throat to the point of gagging and sneezing and constant coughing. The CT described it as a mass like enlargement at the base of the tongue. I also cough sometimes due to chronic bronchitis, but nothing like this. Something is tickling my throat every day to the point of coughing fits. I do not have any other symptoms.

Is this something that I should be worried about?
4 Replies
Essjay
1484 Posts
alexisonfire490‍ im sorry you find yourself on this forum.

Many of us here understand the anxiety of not having all the answers after tests. And how every lump, tickle, sore spot suddenly seems amplified.

It sounds like you are being well taken care of and thoroughly checked out. They have done multiple tests and biopsies and everything is benign which is good news. Obviously the enlargement needs investigation and hopefully you will know very soon what it is.

I find keeping busy and distracting myself works best when I’m waiting for results...

Do you have a date for your ENT referral yet?

best wishes Essjay
Thank you for replying. No date for the ENT yet.
alexisonfire490

I'm glad things are being investigated thoroughly and you will be seeing an ENT.

I think you may find it helpful to speak with our Cancer Information Helpline you can reach them at 1-888-939-3333. They can provide you information and support.

Let us know what happens when you see the EMT. Keep track of your symptoms so you are able to share them at your appointment.

Take Care,
Lacey
Thank you Lacey. I'm wondering if this has happened to anyone else? Misdiagnosis of lymphoma in the lymph nodes but they didn't check all of them? Plus I've been getting a sore throat every now and then and coughing fits from the mass in my lingual tonsil.

Also oncologist and head and neck surgeon doesn't seem to be concerned? Is though due to the immune deficiency.
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