> I am a little concerned about a couple of new symptoms. I have had me/cfs
> for 20 odd years. In the last few weeks I have developed itchy legs, below
> the knees, and periods of overheating at night. Oddly there is no rash or
> raised skin on my lower legs even after scratching quite fiercely.
Hi, Rusty. As you know, those symptoms are non-specific and are generally telling you that there is something wrong with immune signalling. That could be true for lymphoma, or for the leukemia that is most like lymphoma, which is Chronic Lymphocytic Leukemia (CLL). Or from other cancers.
e.g.
http://www.clltopics.org/DC/BSymptoms.htm
But first you'd have to look at the probabilities that cancers are the least likely cause. That should be a little reassuring.
>
> Half way through last year I lost 6kg (almost 10% of my body weight)
> without any change of diet, and I haven't been able to put any back on.
Cachexia wouldn't halt, it would go on and on. I'm interpreting your words as meaning that your weight has been stable for months. You might just have had something hormonal going on. Or quite possibly: histamine effects, which also create itching, etc.
>
> I don't appear to have a fever (at least I don't think so) but I have read
> that it is not necessary.
Correct, in fact no B-symptoms are necessary for lymphoma to be present; there might very well not even be anything unusual on a CBC; there often are zero symptoms at first, for many months.
>
> I have a lymph node behind one ear which is swollen most of the time, and
> it has been like that for over 18 mths.
What's the size and shape? Reactive nodes are enlarged but still bean shaped. A long oval would be a bad sign. Being movable is a good sign. Being hard is not a good sign, being rock hard is a sign of metastasis. Cancerous nodes are almost never painful, since the cancer grows right through the node's capsule whereas reactive nodes push against the capsule and cause pain. If the node has been very painful: do you have a cat?
Is the node divided at all? Any irregularities?
All of those are indications and are not definitive of anything.
Did you have any ear problems before or during the time that the node enlarged? That tends towards being reactive.
Did you thoroughly check neck, underarms and groin for more enlarged nodes? You might as well also check Virchow's node, supra left clavical.
You can't at this point even be sure it is a node, it might be some other primary cancer; or it might be lipoma, or cyst. But it probably is a node, or maybe lipoma.
>
> My sweating is not great amounts of sweat, but intolerable heating where I
> have to throw off the covers for half an hour till it settles down.
"night sweats" are drenching by definition to where you have to change clothes, but that's not necessary to indicate lymphoma
>
> Itching on the lower legs appears to be a classic symptom of NHL, so I am a
> little concerned and wondering what to do next without appearing to be
> overly dramatic.
Not overly dramatic one bit, you have enough valid reason for concern.
> My other concern is any added expenses. I would appreciate
> any response to my symptoms and avenues of testing etc.
To start, the least expensive would be an LDH blood test, possibly showing increased cell turnover. A physician looking at the node is helpful, but not definitive.
A gray scale sono can tell a lot. The presence of a 'fatty hilum' almost always means a node is benign. OTOH, if the internal structure (architecture) is effaced, that's bad.
A color doppler sono can show the blood flow from angiogenesis - new arteries grown to feed a tumor.
Some docs would want an MRI instead of a sono... IMO sono is superior for lymphadenopathy - and cheaper
There is a fine needle biopsy, but those are known for false negatives - the needle didn't hit the right spot. A surgeon just kind of pushes the needle in at different spots and pulls back the plunger a little each time. There's no need for guiding by sono or MRI in your case.
An excisional biopsy is the ultimate, especially in a easy area like yours to get at (not deep nor not much danger of hitting anything vital like nerves, arteries, vocal cords whatever). The resection gives a large sample, plus shows the architecture. A surgeon might see something even during the procedure, if advanced malignancy is present. There needs to be sufficient justification for a resection - plus, nodes after useful and you don't want to lose any for nothing
Testing of biopsy samples starts with a pathologist looking under a microscope for odd looking cells. Next might be flow cytometry to look for surface markers. Then maybe something like FISH for DNA testing, very expensive and often sent away to special labs.
(A PET scan wouldn't really apply to your situation.)
>
> I have read some the available research which seems to question any link
> between me/cfs and NHL, but I realize that any research is questionable.
I hope that overview helps somewhat, Rusty. Twenty years of inflammation can predispose to neoplasms, yes. But my guess is that since you already have immune dysfunction, the CFS is what is creating your symptoms. Cancer can be mysterious and do many things, but that's also true for the immune system with all of its cells and cascades... as you well know. Good luck
