Hi, all the details that you provided are very useful. All patients should be like you :)
1) I don't know much about HIV, but I doubt that is involved here. I would instead first think of disseminated (spreading) tuberculosis.
2) With nodes, we always think of how signs *tend* toward cancer or toward not-cancer. A "rock hard" node tends to be cancer from metastasis (spreading). But inflammation (as from TB) can sometimes also cause hard nodes, and even "rock hard" nodes when calcium gets deposited inside.
Nodes that are painful tend to be not-cancer.
3) The pain coming and going seems more like inflammation that gets worse and then lessens. Inflammation causes swelling -- and when the inside of a node swells it presses against the enclosing 'capsule'. That is the usual cause of node pain.
Inflammation is caused by the immune system. Also, a geographic tongue is an odd, unexplained immune system reaction - and that can point to having an overactive immune system. Having an overactive immune system can mean that nodes tend to get enlarged more easily, and that also creates scar tissue inside nodes more easily than is usual for other people.
1.2 cm is not so large as to be automatically worrying about cancer. Did the CT scans tell the shape of any large node, the width x length?
I think you certainly should be concerned because the enlargement of nodes is spreading. But there is not much reason to be concerned about cancer at this point.
You can ask for an ultrasound scan of some of the largest nodes, to see what they look like inside. Cancer destroys the inside of nodes; but TB can sometimes do that, too. Most infections don't do that. However, here is a major point: enlarged nodes from cancer tend to be rounded. From TB, they tend to be long and thin.
A surgical biopsy would tell for sure, but there is some risk to having a biopsy (mainly infection, or an anaesthetic reaction, or a mistake with the scalpel). A needle biopsy has much less risk but is not as sure.
It's complicated and there is even more that can be said. Does this all make sense so far?
No, I'm not a doctor, Sandip. But thank you for the compliments.
3) I don't know a lot about TB, except that it is difficult to kill. But there also is this important fact: often a person's immune system cannot kill off the bacteria, so it instead builds little walls around the bacteria -- with immune cells that join together to try to prevent the bacteria from doing harm. This is called making 'granulomas' in the lungs and also inside of lymph nodes. So maybe some of the TB bacteria can escape the granulomas. Or you might get new TB bacteria: a re-infection. Or maybe dormant TB can get activated, like a zombie coming to life.
Or maybe there are tiny bits of dead bacteria floating around and your over-active immune system reacts to that as it if were a live infection. Have you ever seen a documentary about lions versus hyenas? Imagine dragging pieces of hyena fur through a group of lions; the immune cells 'react'. Overactive immune cells tend to react even more.
Consider this: whenever a person has the flu, all the symptoms that you feel are only from the immune reaction and the powerful biochemicals that get released; you don't feel anything at all directly from the viruses themselves. Biochemicals make lymph nodes react, with or without a live infection.
My guess is there is a live TB infection. The chances of a cancer always exist, but are very low, from what we know so far.
4) The thigh (inguinal) nodes are part of the lymphatic system, which is similar to the system of blood vessels that circulates the blood. So the lymphatic vessels can transport things to the thigh nodes that makes them react.
It would be difficult to tell the shape of nodes without a scan. Ultrasound is best used on nodes that are near the skin, not deep inside. The advantage is that no radiation is used. With a CT, you should have IV contrast to see the nodes' internal structure.
Did the geographic tongue come before or after the TB?
Then it's possible that the TB infection caused some change in your immune system that resulted in the geographic tongue. That's just a side issue, though.
Your docs might not get worried until/if the nodes get bigger. Then I'd ask for a sonogram, which might lead to a biopsy.
Or maybe the nodes will shrink down instead. Let me know how this goes.