Swollen lymph nodes...Waiting for answers

I would say

To pursue this until you feel you have answers you need.  I certainly cannot diagnose you but if I were you, I would find a physician I trust and tell him/her your concerns and not leave the office until I felt heard.  I truly hope there is an an easy non cancerous explanation for you and that you get the answers you need pronto!  I did have to do some advocacy for myself but so much less than it sounds like you have had to do.  Best wishes, 

Paula 

Sounds viral to me

Those nodes are small - well within normal size. Lymphoma night sweats would absolutely drenching from head to toe. High fevers. Can't get out of bed fatigue. Inexplicable weight loss. But I have never seen a lymphoma that would cause this with only three normally sized nodes.

It could be something worse than lymphoma, so keep checking, perhaps with an infectious disease specialist.

Max Former Hodgkins Stage 3 said:

Addendum

In response to Po, let me mention to you, Daisy, what my night sweats were like:   I soaked the bed so badly that my wife had me sleep on a beach blanket, with a body towel over my pillow. Both were soaked nightly and had to be washed daily.   We were ignorant at the time and did not know what night sweats indicated.  I have never heard of a night sweat in just one area, such as the neck, but cannot say that it is impossible either.  My fatigue was so bad that after 10 hours of good sleep, I would get to work about 8:00 AM and check out a company car to make service calls.  An hour later en route to calls, I would have to pull off in to a parking lot to sleep.  This was after 40 ounces or more or strong coffee that morning.   I guzzled coffee all day and passed out from exhaustion when I got home.   1,000 things cause fatigue.     As Po has written here before, Lymphoma is not cocnerned with hiding itself; it is very proud to put itself in "the patient's face."

Again, after the biopsy, if negative, leave the notion of lymphoma alone.   Laymens' views.

Everyone is different

I was very sympomatic, with classic lymphoma symptoms before I was diagnosed. I did not suspect lymphoma because I had never heard of it!

I had swollen lymphnodes in my neck but none that were palpable elsewhere. I was running a fever every day. I had a cough and chest tightness and I strugged to breathe. I was getting weaker and weaker by the day but not to the point of not being able to function. My sweats, which occurred both during the day and at night, consisted of my head sweating and otherwise feeling very clammy all over my body. I definitely would not have used the word, drenching. I did sleep with a towel on my pillow. I had little appetite and when I ate I quickly became full. I unintentionally lost about 20 pounds in a few months. 

An abnormal chest x-ray for my shortness of breath let to a CT scan where widespread swollen lymphodes were seen all over my body. My spleen was extremely swollen. I was diagnosed with stage III lymphoma. 

It sounds like you are doing a good job of advocating for yourself. I encourage you to persist until you are satisfied. 

Best,

Rocquie

 

 

For what its worth

Before being diagnosed I went through a series of false starts by well-intentioned but very wrong Drs. not well  schooled in blood cancers. My advice has always been to go to an oncologist/hematologist if you suspect lymphoma. Like Rocquie I was totally ignorant of the disease till I finally went to an oncologist on advice of a PA not a doctor. After the doc said everything was fine this young lady followed me into the hallway and whispered ”please go to an oncologist”.  My sweats were mostly head neck armpits and shoulders. My hair for example would be soaked. I did not have sweats every night. My blood work was normal though red and white counts were low normal. I had a bulges in my side and abdomen from swollen spleen and liver. Dr said fatty liver and I needed to forego alcohol and lose weight even though my BMI was spot on. One more point is that FNA needle biopsies are notorious for false negatives. I would say pursue a diagnosis wiih a lymphoma specialist, not with pseudo experts on a message board, and insist on an excisional biopsy. Doctors are not Gods or “all knowing”. Trust but verify. I am still here 7 years after diagnosis and two relapses. Lymphoma is treatable and treatment regimens are being constantly improved. Good luck!

daisy.j said:

Update

I am scheduled for an excisional biopsy next week on Monday. Hopefully I get some type of answer. Does anyone know if these biopsies also test for viral or bacterial infections if they don't find lymphoma? Also, how long do results typically take to hear back?

Couple of weeks, probably

The purpose of an excisional biopsy is to look for the presence of tumor cells in the node. What tumor cells do is "efface the internal architecture" of the lymph node. What does that mean? Imagine peeling an orange, but instead of finding the peel, stem, seeds and segments, the inside of the orange is nothing but solid clay (the tumor cells being the clay). That is what tumor cells do a lymph node and that is why an entire node must be removed. Lymph nodes have an internal structure that is easily observed and so any changes to that structure warrant further investigation.