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False Negative?

caroline6783
Posts: 1
Joined: Nov 2017

Hi everyone - 

I had/have left sided neck lymphadenopathy for about 6 months. I finally saw my PCP, and she noted it as well, and we talked about other symptoms I didn't realize might be related, like widespread itching and fatigue. I didn't (and still don't) have any symptoms consistent with infection or autoimmune disease.

 

Anyway, I underwent an ultrasound, which the radiologist said:

05-Oct-2017 11:03:00  Exam: US Soft Tissue Head and Neck

Indications: Fullness Neck

ORIGINAL REPORT - 05-Oct-2017 11:20:00   GONDA

EXAM:  US Soft Tissue Head and Neck

COMPARISON:  None

IMPRESSION:  Numerous enlarged lymph nodes in the left neck, 

concerning for lymphoma. Ultrasound-guided biopsy recommended.

FINDINGS:

The thyroid gland demonstrates normal morphology, homogeneous 

echotexture and normal internal blood flow. No worrisome thyroid mass.

No right cervical adenopathy. However, there are numerous enlarged 

lymph nodes throughout the left neck (levels II-V), many of which 

demonstrate prominent internal blood flow and lack a fatty hilum. 

Findings are concerning for lymphoma. Ultrasound-guided biopsy 

recommended.

 

So, I was referred to ENT who noted there were about 15 enlarged lymph nodes over that area, and was concerned for lymphoma as well. I underwent excision biopsy, in which two lymph nodes were removed and sent for culture and pathology. They came back negative for lymphoma (they called it follicular and paracortical hyperplasia).  Obviously I am very very happy. We did additional work up for several infectious diseases, autoimmune disease, HIV testing even (no risk factors, but hey, happy to have it ruled out). All negative. The only abnormal finding is a persistently low lymphocyte count that is just being observed. 

 

Again, very happy the biopsy was negative for lymphoma. However, in the back of my head, I have this nagging feeling. If there were around 15 lymph nodes and they removed two...how is it that we can assume that there are no findings in the other 13? Especially in the absence of other diagnosis to explain. I am not trying to borrow trouble, but with the itching and fatigue I just don't feel good about it. 

 

My question is how common is a false negative biopsy? Has anyone had a negative biopsy and later been diagnosed?

Am I worried about nothing?

I do have a follow up ultrasound in January to track the lymphadenopathy. 

 

Thanks in advance for any thoughts!

LacieAnn728's picture
LacieAnn728
Posts: 34
Joined: Oct 2017

i had a similar issue but it was with a needle biopsy that came back negative , all my lymph nodes were swollen in chest and neck and my blood work was very suspicious which is why I then got a surgical biopsy where they removed 2 and one had Hodgkin’s lymphoma in it. I had horrible itching and tired to. Mine was caught by complete accident. if your biopsy  negative I’m sure your fine but definitely understand the concern. If anything talk to your doctor again if the itching doesn’t stop. I wish you well!

po18guy
Posts: 989
Joined: Nov 2011

Due to the nature of lymphoma as free-flowing lymphocytes in the human circulatory system, if it is present in one of those nodes, it would be in all of them, as they are interconnected. Malignant lymphocytes are free to flow throughout the body in the lymph, and do, leading a prominent hematologist to believe that there is no such thing as stage I lymphoma. He believes that up to a certain point, its spread remains undetectable with current technology. However, pathology is crucial, so requesting another lab perform further checking on those node biopsies is entirely appropriate. If you are in the states, an NCI designated comprehensive cancer center would be your primary choice for a second review of the tissue samples.  

Ltakieddin
Posts: 2
Joined: Sep 2018

How did it work out. I note the date is 2017. You can get wrong results if you are on steroids. It happened to my husband. Hoping you are better now.

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

especially when not seeing an oncologist. Based on my experience, which was nearly fatal, don’t mess around with doctors who are not in the oncology field. Over a 2-year period prior to my diagnosis I was treated for RA (which I didn’t have), gerd ( which I didn’t have), told the spots on my kidney were harmless “cysts”, the lump on my collarbone was a cyst caused by RA, told by a gp that my enlarged spleen and liver were “nothing to worry about, just fatty liver”. After an emergency room and overnight hospital visit while traveling and receiving a 4-liter blood transfusion,  due to my gerd so the physician said, I was told by my 30-year old GP that I should go on antidepressants and consider getting counseling. He said quite literally “ we have eliminated everything except lymphoma and you have great bloodwork so I am certain you do not have that. Learn to relax and enjoy life.“ My back hurt terribly. The next summer an orthopedic doctor did MRIs and told me they were normal. His PA, whom I had come to know very well, followed me into the hallway and whispered “you need to see an oncologist”. I followed her advice and was diagnosed immediately with Stage IV FNHL. It was small tumors but everywhere including in my bone marrow. The biopsy led to an 8 hour surgery and a long hospital stay (8 days). It was very traumatic. I came to trust no one in the medical profession. ALL my symptoms went away after my first treatment for lymphoma. No “cysts” on my kidneys, no swollen liver or spleen, no backache. I believe if I had amore aggressive lymphoma it would probably been diagnosed sooner. FNHL can be a silent killer.

Summary: be skeptical and get multiple opinions. FNHL, especially in its early stages, can be very hard to diagnose. GPs tend to dismiss you and prescribe antibiotics for most everything, orthopedists diagnose orthopedic problems, rheumatologists diagnose RA, etc. see an oncologist early on if you suspect lymphoma. Don’t mess around taking antibiotics multiple times. You can have excellent bloodwork and still have lymphoma. Just my non professional opinion. And never trust a physician who pulls out his/her PDR every time you see him/her. Experience counts.

Remember, I am not a doctor. This is my lay opinion.

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