Swollen lymph nodes...Waiting for answers

daisy.j

Hi,

I'm new here and would like to hear others' experiences/symtpoms regarding swollen lymph nodes.

It all started last September when I felt a swollen lymph node on my left parotid area. I went to the ENT, who thought it was nothing, but still ordered an ultrasound. The ultrasound showed a 1cm lymph node with 2 others around the same area. ENT was not concerned, but said to follow up with another ultrasound in 3 months. He also prescribed a high dose of antibiotics for 7 days, however after the antibiotics, there was no change. In November, I started experiecing decreased appetite and feeling fatigued, but didn't really think much of it, as I am a 24-year-old grad student and have a busy life. Around December, I experienced night sweats for most nights out of the week for about 2-3 weeks, however it was only in the neck area. I would wake up with the back of my neck and hair soaked. Didn't think much of it and just attributed it to being hot during my sleep and they eventually disappeared. During these months, I followed up with my PCP several times, who didn't think much of the swollen nodes either. The decreased appetite and fatigue continued and fastforward to February, I had a second ultrasound. This time, about 3 more lymph nodes in the right side of my neck were noted with the largest one at 1.5cm, and they were all in a chain connected. My ENT still was not concerned, but I was growing more concerned, so I pushed for an FNA. I had the FNA done about 1 month ago. The FNA report came back saying no malignant cells were found and that the lymph node was T-cell predominant. I have had several labs done and although they came back fairly normal, lymphocytes were a bit on the higher side and neutrofils on the lower side, as well as ferritin on low side. Since February, I have been experiencing extreme fatigue that just feels like its getting worse. I am constantly feeling tired and completely out of energy, even after a long night's rest, which is not like me. One week ago, I noticed I had lost about 4-5 pounds over the last 3 weeks. I recently saw a hematologist, who told me he's not worried either and he also found another lymph node, no bigger than the ones on my neck in my left underarm. I have also since found 2 additional lymph nodes on the right side of my neck and 2 more on the left side, again all about the same size.

I saw the ENT today and pushed for an excisional biopsy. He was hesitant, however agreed to do the surgery, so hopefully I can have that done within the next month. I am growing more concerned and when I told the ENT about my symptoms, he didn't acknowledge anything I said and I'm positive he thinks I'm a worried hypochondriac. His exact words were "when the biospy comes back negative, you need to promise that you aren't going to pursue this further because that means no cancer." Also, when I asked them what else this could be, his response was "they're lymph nodes that's what they do," to which I said "for 6 months." His response was "you must be fighting off an infection or virus." I don't believe him.

Obviously, at this point I'm concerned about lymphoma. I have a gut feeling that something isn't right, and I am advocating for myself and really pushing for all these tests. Luckily, I've been successful with ultimately receiving the care I need. So, my question is does anyone have similar symptoms? Did it turn out to be something? Am I overreacting?

Thanks!

Iluvlucy

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 

Max Former Hodgkins Stage 3

Nodes

Daisy,

I coined a term here a few years ago, which goes, Don't let an ENT antibiotic you to death.

In other words, don't listen to them for so long that cancer can get the upper hand. In my memory, I'm sure that people have reported more false negatives regarding lymphoma from ENTs than any other type of specialist.  It is wise to do the excisional biopsy, since they are much less prone to false negatives than aspirational ones.  Not much causes night sweats, except blood cancers (lymphoma, leukemia Multiple Myeloma) and hormonal imbalances (guys on hormonal therapy for prostate cancer, for instance, get night sweats as bad as some monopausal women).  Such a biopsy, if it is superficially located, is not horribly expensive.

But:  I would agree with the ENT that if this biopsy is wholly negative, you let the lymphoma worry go, at least unless significant further symptoms emerge.  You will have excercised due diligence.   I found the comment from the hematologist curious, and am wondering what evidence he was dismissing your concern with.    I suspect that ENTs encounter many more patients with unfounded worries about cancers than they misdiagnose as not having a cancer at all.   But every case is different.

Be aware that we write here wholly as laypeople, not medical professionals. I have no medical training whatsoever.

max

po18guy

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

po18guy said:

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.

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.

Rocquie

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

 

 

daisy.j

po18guy said:

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.

They are technically within

Thank you for your responses! They are technically within normal size (although, my doctors have told me anything over 1cm is considered abnormal and would need to be investigated nonetheless), however my worry is that there are about 9-10 of them that I can actually feel. Even though they seem to be not larger than 1.5cm its concerning that there are so many and none of the doctors are able to tell me why this is happening. I know that lymph nodes do not swell for no reason, but yes, perhaps it could be something viral and is worth continuing looking into if the biopsy comes back negative for cancer.

I, too, am experiencing fullness after only several bites and rarely have an appetite lately. I'm sleeping 8-9 hours a night and still manage to take a few naps throughout the day and am so tired at the end of the day.

ShadyGuy

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

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?

po18guy

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.