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To the Undiagnosed and Looking for Answers

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KarlS

Super Moderator
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There are a lot of wonderful people in this group who are happy to help, but keep in mind that we aren't physicians and we can't tell you if what you're experiencing is lymphoma or not. If you have emergent symptoms, such as difficulty breathing, call 911 or go to your closest emergency room.

If you’ve been reading the Internet and found Lymphoma as a possible explanation for the symptoms you're experiencing do not rush to conclusions.

Lymphoma symptoms are varied and can be similar to many common medical conditions, including the flu or other viral infection.

To identify the cause of your symptoms, please consult a doctor, providing also a concise overview of your symptoms and when they started in chronological order.

Here is a link that will tell you how doctors decide if enlarged lymph nodes require testing ... or just observation:
http://www.aafp.org/afp/981015ap/ferrer.html

A differential diagnosis is a systematic (step-by-step) method used to identify the cause of the symptoms where multiple reasons are possible. Copying from a guidance paper: "Although the finding of enlarged lymph nodes (lymphadenopathy) sometimes raises fears about serious illness, it is, in patients seen in primary care settings,
usually a result of benign (not cancer) infectious causes."


You might read and print the guidance document above prior to discussing the next step with your doctor. You might also seek a second opinion if you feel that your doctor is not following the methods describe in the above guidance document.

When a lymph node is considered suspicious by your doctor (such as when the node is larger than normal for a long period of time) a biopsy is needed to rule out or diagnose a lymphoma. If you had a biopsy done by a local pathologist, whether positive or negative, you can request that the biopsy be evaluated by a specialist at a major cancer center or at the NIH.

Jen writes: "All anyone here could possibly do is offer an uneducated guess as to what your symptoms might be. And that’s dangerous – we could scare you into doing unnecessary or invasive tests or we could unnecessarily reassure you nothing is wrong when in fact something is wrong. (Just because your symptoms are not or are not consistent with lymphoma, for example, does not mean something else could be wrong). If you are concerned [and especially if the symptoms persist] continue to follow up with your doctor

Mike writes: "The probability that you have lymphoma is low - much more likely to be an infection or something else. And yes - particularly if you've been torturing yourself with internet-based speculation - the waiting is generally worse than the actual diagnosis. Hang in there - you probably won't have any reason to stay on this forum, but if you do, please come back and ask all the questions you want."

About lymph nodes:

"Human lymph nodes are bean-shaped and range in size from a few millimeters to about 1-2 cm in their normal state (or 10 to 20 mm). They may become enlarged from an infection, the most common cause. Doctors will rarely if ever recommend surgery if the lymph node is not enlarged.

White blood cells are located within honeycomb structures of the lymph nodes. Lymph nodes are enlarged when the body is infected due to enhanced production of some cells and division of activated T and B cells. In some cases they may feel enlarged due to past infections; although one may be healthy, one may still feel them residually enlarged."

__________________
(Adapted from Alison's introduction on the Hodgkins side - thank you, Alison!)
 
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andym

Super Moderator
My concern when people come to us for advice on the diagnosis process is that we appear to have some expertise. After all, after 8 years of living with this disease I've seen some of the top doctors in the world, attended multiple educational forums, read countless journal articles, learned from my fellow patients here, and experienced several different treatments. So, I have learned a bit about lymphoma.

But I know almost nothing about diagnosing diseases that involve the lymph nodes. Each of us knows about our individual path to being diagnosed with lymphoma. However, we know nothing about other people who had similar symptoms and were eventually diagnosed with some other underlying problem. So, if you come here and find that one of us had similar symptoms you really haven't learned much. Yes, you have learned that your symptoms could possibly be due to lymphoma. But you don't know anything about the other possible causes for those symptoms which may be much more likely.

And those other causes are much more likely. I have been a member of this forum since the beginning of 2004 and over that time many people have come to us before receiving a diagnosis. Almost all of those people turned out not to have lymphoma. Perhaps one or two people who were told they likely had lymphoma turned out to actually have it. However, we have also seen a number of people who were told they probably had lymphoma who turned out not to have it.

Something I particularly worry about is that as lymphoma patients we are well aware of the importance of an excisional lymph node biopsy (the surgical removal of one or more lymph nodes) in diagnosing lymphoma. Because the biopsy was the key to our own diagnosis process we may tend to recommend them to others. However, any surgical procedure carries risks and so I worry that we could be encouraging people to push for biopsies when they may not be justified and that this could encourage people to take unnecessary risks.

So ask questions if you wish but please be aware that you are asking a group that has a limited and biased view of medicine. In the end, I think there are primarily two things we can do for you:

1) provide sympathy about how hard it is to have something wrong with you and not know what it is.
2) suggest that if you do have a biopsy that you get a second opinion on the results from an institution that has specialists in hematopathology (the pathology of the blood).

Just remember that we aren't doctors and shouldn't even play them on the internet.
 

anjou

Active member
Well said Karl and Andy!

Here is some reading on the perils of using the internet to self-diagnose:


When in cyberspace, don't self-diagnose http://bit.ly/H8palC

Health Psychology - For the Hypochondriac--Internet Opens New Worlds of Illness http://bit.ly/H7ApeO

Hypochondriacs of Cyberspace
The growing list of online medical sites has created a new breed of patient -- the cyberchondriac
http://bit.ly/HvMu0E
 

alisonh

New member
The growing list of online medical sites has created a new breed of patient -- the cyberchondriac
That made me laugh.

If you are concerned, ask your doctor for a chest xray and/or pelvic xray (called a KUB) and blood work (CBCD, ESR, LDH). These are inexpensive, quick, and easy tests that are sufficient to rule out lymphoma in a majority cases. Keep in mind that most people with lymphoma have "normal" bloodwork on diagnosis. A mildly elevated ESR or LDH could indicate lymphoma or any number of inflammatory processes, most commonly a cold or flu.
 
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andym

Super Moderator
NOTE: If you are currently not diagnosed with lymphoma please do the following:
1) Read this thread (you probably have done so if you got this far)
2) If you feel that a discussion of your particular situation is needed then please start a new thread by clicking here: http://forums.lymphoma.com/forumdisplay.php?f=28 and in that thread please state that you have read this information for the undiagnosed. It will save us the effort of asking whether or not you have done so.

Please do not reply within this thread about your specific case as this is meant as a spot for general information.

I have closed this thread to prevent new, undiagnosed people from adding to it by mistake. Other moderators can open it if anyone has something that needs to be added to it.
 
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