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lilsilva545
New User
Joined: 20 Aug 2009
Posts: 3
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 Posted: Thu Aug 20, 2009 1:31 am Post subject: any advice.. please help... |
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| hi am a 24 year old female.. i have had enlarged groin nodes *on both sides* for the past six months.. they are firm and barely movable.. the largest is about an inch and a half.. they are palpable but not visible.. i thought that everyone else's nodes were like that until i stared having nodules on my neck.. they are small but they have lead me to search and know more about lymph nodes.. anyways, back to the subject.. i went to the doctor about a month and a half ago and upon physical exam he said that he could also feel the tail of my spleen below the left coastal margin.. he was concerned so he ordered every blood work in the book to rule out things like stds, hiv, lyme disease etc.. and he ordered a chest xray too.. a week later he called back everything was normal.. during that one week i was waiting, i have developed a lot of small palpable nodules on my abdomen*mostly upper abdomen*.. also my rib cage (specially the left side) where the coastal margin is at was portruding but the tissue on top of seems thicker at the same time.. for example, normally when i lay down you can see my rib bones and my stomach is flat.. but now the rib cage is high but i cannot see the bones because the tissue on top seems bigger...no i didnt gain weight..in fact i have lost about 10 pounds in a matter of 2weeks...also, i have discovered a left supraclavicular lymph node by accident while i was laying down..it is about 1cm firm but a little movable.. i can only feel it when am laying down because it sets deep down the fossa right behind the clavicle.. so i told the doctor what am experiencing and he ordered me a chest, abdomen, and pelvis ct scan with contrast.. mind you i have no health insurance and had to pay $7000 to get it done.. but i thought that it would give me a better idea of what is going on.. so now ct results are back and show NOTHING.. they didnt mention anything about the supraclavicular node.. nothing about the 1.5 inch nodes on my groin, nothing about the nodules on my abdomen.. nothing what so ever.. the dr called me and said pretty much that there is nothing further for him to do... putting my symptoms aside (such as weight loss, fatigue, weakness, constipation, diahrea) and lets say all these symptoms are in my head... the lumps are real.. and the lymph nodes are there.. how can none of them be significant enough to be shown on the radiologist report.. has anyone experienced anything like this before.. and what do you think i should do next.. |
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ChemoMan
Moderator
Joined: 04 Jun 2008
Posts: 1061
Location: South Australia
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| Posted: Thu Aug 20, 2009 6:01 am Post subject: Re: any advice.. please help... |
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Hi lilsilva545
So sorry to hear your symptoms are causing you so much distress.
Try not to panic most enlarged nodes are caused by infection and not cancer. Normal nodes are about the size of jelly beans and can be felt. The only way to get a definite diagnosis for NHL is by excisional biopsy, CT scans are of very limited use in diagnosis.
Most doctors will advise a watch and wait period to see if the nodes get smaller and this could be up to 6 weeks. Dont panic as the wait won't kill you regardless of what you have.
You have done the right thing to see the doctor so don't feel bad about this. There is a financial forum on the board where you can get advice to help you in this area I suggest you post there for some advice, I can't really help you other than to point you there.
Good luck I hope all is well. Rule number 1 is don't panic, try to remember that.
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1 |
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lilsilva545
New User
Joined: 20 Aug 2009
Posts: 3
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| Posted: Thu Aug 20, 2009 1:10 pm Post subject: Re: any advice.. please help... |
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thank you for your quick reply.. i understand the whole watch and wait concept.. but i think that 6 months is a long wait already... and i understand that ct scans are not diagnostic tools but they are used to see what is going on in one's body.. i didnt expect the doctor to tell me " the ct scan showed cancer" but i expected him to say " we see enlarged lymph nodes".. isnt 1.5 (almost 4 cm) inch nodes considered enlarged in the groin area... and also about the nodules and the changes i feel in my abdomen, shouldnt the ct scan have at least given me an explanation.. whether they are cycts or nodes..just anything..also arent supraclavicular nodes an important finding no matter what the size it is.. i heard that if is it is palpable, then malignancy should be excludes...i feel like i am back at the same boat where i started.. no diagnosis.. not even a logical explanation... was there an exact thing they were looking for in the ct that i did not have.. i mean, i thought that enlarged lymph nodes, without any necessary spread to other organs in the body, is enough to be a concern.. am i missing something? at this point am thinking of either taking my medical file to another doctor and see what he says... or asking my previous doctor to refere me to a general surgeoun... ive only graduated from college and got a job a few months ago and i have spent almost everything that i have on this; so you can see how frustrated i am to not have any explanations...
ps chemoman, i have passed the panic stage, now i am just pissed off lol |
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ChemoMan
Moderator
Joined: 04 Jun 2008
Posts: 1061
Location: South Australia
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| Posted: Thu Aug 20, 2009 4:30 pm Post subject: Re: any advice.. please help... |
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Hi lilsilva545
Ok 6 months is a long time, too long in fact. As I said before the only way to get a definite diagnosis for NHL is by biopsy, so I don't really know what is going on. Maybe it might be beneficial to see someone else if you are getting no joy from your doctor or perhaps put some pressure on your doctor to get a biopsy.
Im sorry this has gone so wrong for you, but keep advocating strongly for your own health. I hope all goes well and your fears can be put aside soon.
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1 |
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lilsilva545
New User
Joined: 20 Aug 2009
Posts: 3
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| Posted: Tue Aug 25, 2009 4:52 pm Post subject: an update |
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| k so i went to my doctor to pick up my lab work and ct scan report..the doctor previously told me everythin came out normal..so i go home look over the lab work and i only saw the paper that shows my lipids , hiv, and std..i emailed the doctor and told him that he forgot to give me the papers for all the other tests like my cbc..he emailed me and said that they have not come back yet..mind you i did this test one month ago..so now am mad because how can he tell me that everythin came back normal when he didnt even get the test results back..two hours later i get a phone call from his office nurse sayin i need to come back and redo the test because the lab disregarded it cause the sample was too old when it got there..now i dont buy that for one second.. I Think they never sent it..and in fear of me knowin they acted like it was the lab fault..how can a doctor not pay attention to a cbc? It could show so much..and for him to tell me that i was fine based on my lipid test only?! I find it crazy..this goes to show that doctors sometimes can make dumb mistakes..thats why you gotta do things your self...anyways..am goin tomorrow morning for more blood work..ill keep you updated |
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