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Systematic lymphnode enlargement- too small to biopsy

Boozoo99
Posts: 1
Joined: Mar 2019

Hi all- I am new to this board and am hoping someone has had a similar occurrence. I am a cervical cancer survivor of 1 year so when my lymphnodes came up I immediately thought the two were connected but the symptoms have since progressed and taken a different turn. Please see my timeline below and I would LOVE to hear if anyone else has had a similar experience- 

November 2018- lymphnodes in groin come up. Palpable and hard- experiencing leg weakness Which is how I found them. 

December 2018- went to annual appt and Dr noticed enlarged neck nodes along with groin nodes. Ran bloodwork to check for infecrion. All came back clear. Sent me to my GYN Onc. 

JanuMary 2019- went to gyn Onc. He mentions worry of recurrence or lymphoma and orders a CT scan. CT shows subcentimeter but enlarged nodes in groin and small bowel mesentary. He sends me to my GI.

January 2018- GI runs all infectious disease labs. All come back clear. In the mean time I have nodes come up behind my knees and one in my neck. 

Febraury 2019- I am sent to ENT to hopefully biopsy my neck node as it is over a centimeter. It is on my carotid so they can’t. 

Now- was sent to Hematologist Oncologist that could feel nodes in my arm, neck, groin and knee but all were subcentimeter but palpable and he agree the neck one wasn’t possible to biopsy due to location. He ran blood work that showed the flow rate of B Cells and it came back clear. He says we have to wait to see if another one comes up that is able to be biopsied to definitively say anything But that he feels good about it not being a malignant conditin. 

 

Im worried it could still be a low grade lymphoma and just don’t understand how none of the lab work shows anything when clearly my body is doing something now that i have enlarged nodes in 5+ places. Has anyone had enlarged nodes that they feared were lymphoma but weren’t able to get them biopsies??? Has anyone had a clear flow rate blood work result but still been diagnosed once a biopsy was possible??? Would love to hear any feedback from anything similar. Thank you so much in advance. I feel like I’m chasing my tail. 

yesyes2
Posts: 581
Joined: Jul 2009

Welcome.  Sounds as if you've been having a challenging few years.  Question, have the doctors ordered a PET Scan to see if the nodes are hot?  If hot that would be the node to biopsy.  It's difficult but I had a breast biopsy, turned out breast cancer, that lite up on my PET scan for Lymphoma.  The entire tumor was under one centimeter and the Radiologist did not have a problem biopsying using a MRI machine.  I also had a lymph node biopsed from behind my liver using real time CT scan.  Radiation Interventionists are very good at doing this sort of biopsy if they have the correct equipment.  Most likely it would require either a NIH Cancer Center or a teaching hospital.  Although doctors prefer removing an entire node that possibiltiy is not always available.  Good wishes to you.  please let us know what you find out.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3250
Joined: May 2012

Boozoo,

My path was to initial lymphoma diagnosis was UN-like most individuals, but it does address your question.  At my first-ever CT, I had bulky nodes in the axillary (armpits), throughout the chest cavity, including compressing the heart and escophagus, wrapped around and compressing the superior vena cava, inside both lungs, covering the spleen, and in the pelvic-groin region. The surgeon who took my excise biopsy from the left axillary said it was a little bigger than a golf ball, but added "I had a lot of others to choose from."  I was having occasional unstable angina at the time due to compression of the heart.

My CBC blood panels were nearly perfect from this time period.... This is NOT the norm for a lymphoma patient with bulky disease, but it was my clinical history.  I still have the results from then.  Most commonly, WBC and RBC numbers will be out of wack, as well as LDH (do not confuse with 'LDL').   But I have encountered a few people here over the years who presented with advanced disease (meaning Stage 3 or 4) and CBCs that were normal or close to normal.

LDH was the only abnormal lab for me at that time.  Interestingly, my blood counts got very bad only after beginning chemo (a pretty common thing), and remained skewed until about two months after chemo ended.  I was even hospitalized for three days with neutropenia two days after my first infusion.

LDH is not ordinarily part of a CBC. It can be run individually, or is ordinarily part of a so-called metabolic panel.  You might wish to ask for one. The test is mostly run by oncologists, or cardiologists following suspected heart attacks, since it detects chemicals emitted from cells following cell death.

Please continue to update, since we learn more from newbies than they learn from us,

max

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