If not lymphoma…what. – lymphoma.com – lymphoma support and help forums! pipelle endometrial biopsy

In early January, I had a reaction to contrast dye during a CT scan, after having never had issues with it before. Almost overnight, it seemed like my immune system was going haywire and I was allergic to things I’d never been allergic to, and sick with bronchial infections back to back. A few days later, I felt a sore spot near my jaw line and found what I now know to be a rock hard salivary gland. Through all of that I also had parotiditis and pain in my face.

After finding the swollen spot on my jaw, I decided to check all over my body and was shocked to find a swollen epitrochlear (antecubital) node in my arm. I made an appointment with an ENT, I figured he would be best to help with the lymph node issue and face pain. He was of no help other than referring me to general surgeon for biopsy.

Biopsy came back as a lipoma…because he cut out a chunk of fat and my swollen node is still there. He sent me to a rheumatologist.

Rheumatologist ordered blood tests for every autoimmune disease possible, as well as all major viral causes (TB, hep b and c, HIV), and a CBC and CMP. Nothing at all stood out, blood work fine. So he decides he can’t help me, but wants to make sure someone can and orders a stat ultrasound.

I went the same night and had an ultrasound of neck and face and went and picked up my radiology report the next day, which showed a right cervicle node measuring at 3.8x2x1cm, with a recommendation for head and neck CT. Per the rheumatologist, I have already had WAY too many CTs and various scans in the last year and he says you cant get a good image without contrast in that area, so I call and make an appointment with a general surgeon with a specialty in oncology for the following day.

General surgeon reviews my disc of images and radiology reports and symptoms and tells me that he is not concerned about any cancers, bc of my age, but he IS concerned about lymphoma. He wants to do an exicisional biopsy. He asked if I’d only like the neck node removed and I said yeah that’s main concern, but then he says he thinks it would be best to remove epitrochlear as well because if neck is lymphoma, so is it.

Fast forward to today. My surgeon appointment was last friday and I’m on edge just waiting to hear something. Call and find out my chart has no info. Call 6 hours later and its corrected but I never signed consent for surgery (it wasn’t given to). I went in and signed and asked on timeline for biopsy and they said no idea.

Meanwhile, I have an appointment with a NEW ENT set for next week, and they call me today and say they can get me in. So I go see him. Explain for the millionth time to a new person what’s going on. He reads the radiology report and feels my nodes and says he wants to order neck CT w/o contrast. I object and ask if he feels it will really show a clear enough picture. He assures yes. Says CT in next WEEK and follow up in another WEEK and THEN he’ll decide if he wants to do a fine needle biopsy…which I have read is useless for dx lymphoma?

Any advice or experience anyone can share? I feel we have really ruled EVERYTHING but lymphoma and total fluke out. I have obsessively read about malignant vs reactive size on u/s and everything says over 1 cm is generally malignant. I do have some weird allergies and histamine things going on, but would they make these nodes swell and continue to grow, including new ones, for several months?

First thing to do is try to relax a bit. Even if you were diagnosed with lymphoma, with the symptoms you describe you would have a type that doesn’t require emergency intervention. If you DID have something like Burkitt’s, you’d already be in the hospital getting treatment – it’s one of very few extremely aggressive types.

There is still a high likelihood that you don’t have lymphoma. Enlargement of lymph nodes is symptomatic of a great many illnesses and conditions. Some folks on this forum have take months, even years to get an accurate diagnosis – and often that was not lymphoma. Just the presence of a couple of nodes, which seem to be acting differently, signals to me that you have something other than lymphoma going on.

Regarding the fine needle aspiration – those might be okay to confirm or deny that a particular node is displaying lymphoma after you’ve already been diagnosed. But for diagnosis the chances are slim that you’ll be able to get any sort of definitive answer regarding the type. Even if you have lymphoma, the best result you might expect from an FNA would be something vague like lymphoproliferative disease, suggestive of lymphoma. That doesn’t tell you what kind you have, which is absolutely necessary for making treatment decisions.

My understanding on node size is that if nodes are under 1 cm, they usually aren’t suspicious for lymphoma. But even if they are over 1 cm, that doesn’t automatically make them malignant. It just is a signal that you should have them checked out, which you are doing.

Finally, even if lymphoma is diagnosed, it doesn’t mean that treatment is immediately in the cards. For indolent types, like follicular lymphoma, it may be months or years before treatment becomes necessary. Particularly for follicular, nodes may swell and shrink to a rhythm all their own for a long, long time – without treatment.