I recently had a bad case of mono (about 11 months) ago. Since then, I have only gradually gotten better, and have had on and off problems (low-grade fevers, recurrent sore throats, colds, fatigue every now and then).

In Dec., I noticed what seemed to be a small lymph node on the left side of my neck. Of course, I kept playing with it, squeezing it and poking it. Then, I poked around on the right side of my neck, and sure enough... found another one. Then, I took a mirror and starting looking at my neck, and noticed a little lump behind my left ear (which is soft such that it can't be felt as easily as seen). The nodes are not exactly soft, but they are also not hard... they are smooth and somewhat firm... but, they can be squished flat... if this makes any sense.

I went to the PCP, who did a pretty extensive series of blood tests, WBC with diff, thyroid, and some others that I can't remember. She also did Epstein Barr. I got a call about a week later saying that my bloodwork all came back normal, except for the Epstein Barr, which was "elevated." They sent me for a CT scan of the neck.

The results of the CT scan say "enlarged digastric jugular lymph node on the left side" and "another on the right in the upper normal limits" and "additionally, there is some prominence of the adenoids and palatine tonsils." It goes on to give the differential diagnoses... which, of course, include lymphoma and leukemia.

I have a referral to an ENT. I am very panicked, but I don't want to have unnecessary and invasive tests if I really don't need to. I am thinking of just asking the ENT to biopsy every lymph node that he can find, and then take out my tonsils and adenoids.

I have read about the connection between EBV and lymphoma (which I also understand that 90% of the population has been exposed to EBV, so wouldn't it stand to reason that the connection between EBV and lymphoma is incidental?). Nonetheless, now I have convinced myself that I have cancer... This is all very stressful... I have two babies, and I want to make sure I am around for them.

I would very much appreciate support/information/comments/opinions from anyone who has gone through this testing, has had similar symptoms/problems, and what to expect.

Thank you...!

Usually, the ENT will biopsy the largest node available, that will not likely cause any bleeding problems, or nerve problems. A lot of times other antibiotics will be prescribed and a wait and watch approach will be taken. If the ENT does do a biopsy, and it comes back positive for cancer, there is still a likelihood of taking a wait and watch approach if there are not othe symptoms occurring. Hopefully your nodes are just reactive to the Mono, and maybe that is the size that they will be from now on. Good luck

Thank you so very much for your reply... the lymph node behind my ear is getting gradually bigger (over the last week), so I'm getting more nervous.

What do you know about the EBV and lymphoma connection? I am interested in how/why/if, and have found so much conflicting information.

Most of the research merely links one to the other. The reasons are varied. Of course if every one who has mono, goes to the doctor because they have flu symptoms and swollen glands, the likelyhood of catching lymphoma will be increased. There is a percentage of people out there who do not go to the doctor for flu symptoms and swollen glands and just sweat it out so to speak for financial reasons or just don't go to doctors on principle. They too may or may not have lymphoma. So the research is skewed to " if you have swollen glands, it MAY, be linked to lymphoma, and maybe not.
The bottom line is that lymphoma is a cancer of the lymph system, not the blood system, and cancer is the condition of where the deformed or dying cells do not die off properly and start to reproduce deformed, ineffective cells, which if left unchecked, eventually replace healthy tissues which eventually wipes out the body. So, the connections to viruses, environmental poisons, and genetic code alterations are all considerations, and I personally do not believe that it is any one thing, but a combination of things and added stress which lowers the function of the immune system to get rid of the defective cells. So, the bottom line is to try not to distress yourself while waiting. This will help you to fight this disease until you know the results. Good luck.

The left node is almost 2cm (per the CT scan), and there is a smaller one below it that I can feel, but was not indicated on the CT... there are a few others in the "posterior triangle," but not clinically enlarged. I visited the ENT, who treated me a bit like I was paranoid. He said he couldn't feel anything, but I can still feel them (and see them very slightly when I turn my head, but I am fairly thin).

Nonetheless, he is going to remove my tonsils based on the fact that they are slightly enlarged and I have had recurrent sore throats this past year (like one moderate one per month, and a really bad one almost every other month).

I'm feeling very disoriented in this process. Once I get online and start reading things, I get paranoid...

I've read that the jugular digastric lymph nodes drain the tonsillar area... does this sound like I have "clogged" (if there is such a thing) lymph nodes from all of my infections? And, the elevated EBV... Could it be an infection or virus? Tonsillitis? But, my WBC was normal... wouldn't the WBC indicate an infection, even a latent one?

Should I see an infectious disease doctor?? Another ENT?? A hematologic (sp?) doctor??

I'm really confused (and scared), at this point. Any advice would be appreciated.

Hi there,
First off, you are not paranoid. Some docs simply don't have good bedside manner. Anything above 1cm in the neck region is suspicious for malignancy and since your CT scan showed a node of 2cm, I'm surprised your doctor looked at you like you were paranoid. Did he review the CT scan films and/or report? I don't know how old you are, but as an adult, taking tonsils out is a much more complicated procedure. The doctor would be better off removing the 2cm node as it's less complicated and will reveal what is going on with you. My suggestion is to get a second opinion from an otolaryntologist/ head and neck surgeon prior to making the decision of removing your tonsils. An elevated WBC won't yield lymphoma results (or any blood test for that matter) but it should reveal an infection if you do indeed have one. You can have an elevated EBV test without an elevated WBC count. Did the doctor tell you if the elevated number is IGG or IGM? The difference between those two is whether you have chronic EBV or an acute case. I would certainly get the second opinion. And it's my opinion only, but I would have the node removed first as opposed to the tonsils as they are only slightly enlarged.
Let us know how it goes.
:wave:

He said he couldn't feel anything when he felt my neck. He did look at the x-rays for a pretty long time. He seemed to think the radiologist's report was exaggerated, and commented that they report "A-Z" just as a CYA measure.

Because I have had so many chronic sore throat issues, children in daycare, and the elevated EBV, he seemed to chalk it up to those factors. (I also had a very, very bad cystic pimple on the left side of my nose, which persisted for a few weeks). My WBC wasn't elevated to indicate infection, but then again, when I had it done I had a cold... so, I don't even know what is accurate anymore.

I see him (ENT) Tuesday for a pre-op visit. I am going to ask him again to try to feel the lymph nodes. I still feel the nodes, though they are small. They are superficial, and seem to lay right on top of my neck muscle. Being thin, I can't help but notice them.

I probaby should get a second opinion... you're right. He didn't seem to think the "nearly 2cm" was anything to worry about; apparently, nodes can be up to 1.5 cm in the jugular digastric area, and 1 cm in other regions of the neck. I don't know who says so, but, without having gone to medical school, I have to defer...

Thank you for your reply... Stay tuned...

Well, I got the tonsils taken out (which wasn't that bad). The doc biopsed them and the biopsy didn't show anything.

The doc has still not been able to palpate the "nearly 2cm" node that showed on the CT scan, and assumed that it had went down. I still have a smaller node on the left side of my neck, which is palpable. The doc felt it, at my request, and he said that it didn't concern him because it was "soft, mobile, and small." It is relatively soft, but it wasn't there before... and it doesn't seem to be going away... going on 5 months now.

Now, last week, I started to have night sweats. I am running fevers intermittently and am very fatigued. At night, I wake up with chills, then get all bundled up and then I guess the fever breaks and I wake up all sweaty and clammy. This has happened a few times now.

I don't know what to do. The doctor is insisting that he can't find anything wrong with me, I've had a CT scan of the upper chest, head/neck (which showed the enlarged jugular digastric node, plus a few other posterior cervical nodes which were not clinically enlarged, but the radiologist noted them), I've had my tonsils out and biopsied, I've had liver function tests, CBC with differential all normal, and I've had Epstein Barr tests which show that I have raised levels of IGG and IGM - I guess showing a chronic infection... what now?

I could ask him to biopsy the smaller lymph node, but he seems to think that it is small and insignificant (and, what if it's not the real problem!). Maybe I'm not asking him the right questions? Or, not asking for the right tests? Or, is this all Epstein Barr virus and I am simply overreacting?

Thanks in advance to everyone for the great advice.

Raised IGM suggests active infection. Tonsils contain lymphoid tissue, and if they are swollen in the setting of generalised adenopathy they should give a representative picture of what's going on elsewhere. I would say it was probably unnecessary to have another biopsy, but it is odd that your doctor should say there was nothing wrong with raided IGM level. Perhaps you should take your results to an infectious diseases specialist and ask for another opinion.

Actually, it was 3.64 and 3.94 on IGG AB and the EBNA, respectively. I don't know what the IGM was... I can't remember. Do you know what each one means? My doctor doesn't know. THANK YOU so much for your quick reply.

The IGM was .08. I saw my general doctor todaybecause I have started to have night sweats. I also have a constant low-grade fever around 99.5. He felt my neck and said that he feels lots of small lymph nodes, but nothing "prominent." So, I had a chest x-ray this morning, plus c-reactive protein, sed rate, and another CBC with diff. And, he even gave me a tuburculosis test.

I don't have any of the results yet, but I am very nervous. He said that it would be premature to biopsy any lymph nodes, and that he "doubts" I have cancer - since I gained 4 pounds in the past few months, he thought that if I were having these other symptoms (fevers, night sweats), that I wouldn't be gaining weight at this point.

The fevers are really debilitating. I feel awful. I feel completely exhausted, out of it, feverish.

Please help. What does this all sound like? (Constant low-grade fevers, lymph nodes, tiredness, also.... slight, vague loss of hearing in my right ear, recurrent canker sores). Are these symptoms of cancer?

Well I dont believe it! You are on the same road as I have been on, I feel ya pain! Back in February of 2004 I had an encounter with a female, and about 2 weeks after developed sore swollen lymph nodes in my neck that didnt go away for a whole month! When I finally went to the doc she prescribed me an antibiotic (which the Lymph nodes did go away after this) and gave me a bunch of tests for STDs and other stuff. Just before I started taking the antibiotic I developed a malar rash on my face that has never gone away (its itchy from time to time), then the rollercoaster of symptoms came that has never stopped. Ive had everything from persistent mild feverishness (though it dont show up on the thermometer usually, in fact my temp is usually 97.9???), loss of appetite for an entire week, one night I woke up with chills and shaking, BAD floaters in BOTH of my eyes and gradual loss of vision in one (my theory there has always been possible Primary CNS Lymphoma, a complication of Lymphoma general). Ive also had numerous gastric symptoms including a persistent abdominal burning that started back around may of last year. Ive also had sores in my mouth for a period of time, extremely DRY mouth for a period of time, headaches, EVERYTHING UNDER THE SUN.

Well I had a CT Scan of the abdomen with contrast in August of 2004 and it revealed nothing other than some diverticuli in my intestines. I also had near perfect blood counts at this time. The symptoms just keep coming and overall im gradually worsening and succumbing to the extreme fatigue and lack of energy at times. Recently I have also developed dark reddish purple circles around my eyes and way back in March I did lose about 8-10lb after the initial problem.

Now the doc never did find Mono with the Monospot test, but it is an extremely easy test to mess up. One of my many theories has been that I got Mono which probably lasted for months (Mono spells can last as long as six months or more, and can turn into "Chronic Mono" in rare cases), and that it may have spurred Lymphoma.

The only problem with my theory is that Ive never had swollen nodes other than the painful initial ones, or at least not that I can feel.

The search goes on...

Good luck and keep on top of those docs!
Ian.