Aa
Lymphoma
I am a teenager and found a lump in my abdomen a little over two weeks ago. There was also a lot of swelling around my entire stomach. The lump was hard and tender to the touch. I also presented with other symptoms such has low grade fevers (on and off), night sweats, difficulty breathing, loss of appetite, nausea, fatigue, and the list goes on. I went to the ER on Sunday after the lump got larger and the swelling was becoming worse. My ER doctor ran a CBC (complete blood count) and a CT on my chest and abdomen. Both came back normal but he told me he was still concerned about Lymphoma and that the CT "maybe" could have missed it. He said he was going to treat it as an infection with antibiotics and if the lump hadn't gone away in a week, I'd need a biopsy. I came home and I began to feel one hundred times worse, it was unbearable. We called the hospital I had went to earlier in the day and they thought I would need to be admitted so they suggested I go to the children's hospital. I went, and got a brand new intern as my doctor, who refused to do anymore tests or listen to a word I said. She did the same CBC and sent me home. Last night, I found a new lump in my lower abdomen. It was hard also and tender to the touch. I also had pain on my sides and in my neck. I went to my general practitioner, who as I expected, didn't listen to me. She didn't want me to get a biopsy, and totally blew me off. She did do more blood work though - another CBC, something else and a LDH. She said "if" something alarming was found in my blood work, we'd do an ultrasound. She also told me they found fluid in my abdomen (which I didn't know before). I am becoming aggravated with doctors and not being listened to… as I know my own body and know that something is not right. Has anyone here dealt with symptoms like this or doctors of this nature? Any suggestions?
Thanks!
Thanks!
Hi laurenmarie,
It sounds like you got something going on, especially with the tender lumps and fluid in your abdomen. Could you go back to the original doctor that was willing to do a biopsy? A biopsy is what will tell you for sure what you're dealing with. One thing I will say is most lumps are painless, but not necessary all. Pain is typically not associated with lymphoma unless it is causing pressure on a nearby organ or nerve. Also, I've never heard of lymphoma causing fluid in the abdomen. Did you get any kind of explaination for the fluid? Why did they do two CBC's? Sorry...lots of questions. It just seems to me that if lymphoma isn't on their radar, what else is?
It sounds like you got something going on, especially with the tender lumps and fluid in your abdomen. Could you go back to the original doctor that was willing to do a biopsy? A biopsy is what will tell you for sure what you're dealing with. One thing I will say is most lumps are painless, but not necessary all. Pain is typically not associated with lymphoma unless it is causing pressure on a nearby organ or nerve. Also, I've never heard of lymphoma causing fluid in the abdomen. Did you get any kind of explaination for the fluid? Why did they do two CBC's? Sorry...lots of questions. It just seems to me that if lymphoma isn't on their radar, what else is?
The original doctor was just an ER doctor... I couldn't go back to him. He was the only one who really listened to me and my concerns. The others kind of acted like I was silly. Apparently certain types of cancer can cause fluid in the abdomen - but I'm not 100% sure. I've actually now had three CBC's, as my GP ran another one today. I don't know why they keep checking it. Lymphoma was the concern of the first doctor - my GP didn't completely rule it out, but didn't seem to believe that was the problem. A hernia was also ruled out. They haven't told me anything else they think it could be - honestly I think they are stumped and don't know what is wrong with me. Thanks for the response!
COMMUNITY LEADER
hi, the lymphoma-associated fluid you are thinking of is called "ascites". But ascites can also be from other causes. Is it getting bigger and bigger?
I would think they can get a sample with a needle, maybe US guided unless it is very apparent and near the surface.
a CBC is simple and inexpensive, so it doesn't hurt to do repeat tests to see if anything has changed (and/or a previous test might have been faulty)
still, I'd guess lymphoma is not likely
I would think they can get a sample with a needle, maybe US guided unless it is very apparent and near the surface.
a CBC is simple and inexpensive, so it doesn't hurt to do repeat tests to see if anything has changed (and/or a previous test might have been faulty)
still, I'd guess lymphoma is not likely
Yeah, I've heard of ascites. It's gotten bigger since when I first found the lump. The lump is a little harder to find now since there is swelling/fluid around it. There's also a new lump a little lower.
My GP made an appointment for me with a surgeon, hopefully that'll be another step forward.
My pain has gotten worse in my stomach and lower back. My blood work came back normal again. Thanks for your response!
My GP made an appointment for me with a surgeon, hopefully that'll be another step forward.
My pain has gotten worse in my stomach and lower back. My blood work came back normal again. Thanks for your response!
COMMUNITY LEADER
I'd think it should be possible to distinguish fluid from an abscess from other things (granuloma?) by the CT. You can get a copy of the CT report and look for key words - I'd very much recommend that rather than being in the dark while you wait for the next appt.
Did you travel to any exotic places?
If the initial ab lump is near the surface... lymphoma would tend to be deeper.
I'd guess the next step is for the surgeon to get a sample of the fluid, and also he can drain the area to relieve symptoms. you can watch him do it. They'll be able to tell something immediately from the color.
The ascites AFAIK can be leeching of lymphatic fluid out of lymph vessels (which are more permeable that blood vessels) or maybe some exudate from some unusual cells in the area. Your pain might be simply from pressure.
I assume urinary output is normal else you would have mentioned that... also yellowish eyes.
Lymphoma is not likely at your age, but Hodgkin's is more common that NHL.
Did you travel to any exotic places?
If the initial ab lump is near the surface... lymphoma would tend to be deeper.
I'd guess the next step is for the surgeon to get a sample of the fluid, and also he can drain the area to relieve symptoms. you can watch him do it. They'll be able to tell something immediately from the color.
The ascites AFAIK can be leeching of lymphatic fluid out of lymph vessels (which are more permeable that blood vessels) or maybe some exudate from some unusual cells in the area. Your pain might be simply from pressure.
I assume urinary output is normal else you would have mentioned that... also yellowish eyes.
Lymphoma is not likely at your age, but Hodgkin's is more common that NHL.
I actually called to get a copy of my CT, and am going to pick it up on a disc tomorrow.
I've never traveled out of the country...
We'll see what the surgeon says, hope it brings me some relief. I am feeling a lot of pain and just discomfort in general. The word sarcoma has been thrown around. (another type of cancer... much more rare though)
Yes, most everything is normal. The lumps and symptoms accompanied with it have seen to come out of nowhere.
The "main" lump (first one I found) is a little deeper. You have to really poke around and push to feel it. Again, thanks for your help!
I've never traveled out of the country...
We'll see what the surgeon says, hope it brings me some relief. I am feeling a lot of pain and just discomfort in general. The word sarcoma has been thrown around. (another type of cancer... much more rare though)
Yes, most everything is normal. The lumps and symptoms accompanied with it have seen to come out of nowhere.
The "main" lump (first one I found) is a little deeper. You have to really poke around and push to feel it. Again, thanks for your help!
I hope you get some answers soon, laurenmarie. Not knowing is truly one of the hardest parts to go through. I'm glad you're seeing a surgeon soon. Maybe he will recommend a biopsy. Please keep us posted.
COMMUNITY LEADER
Well, I don't think that the CT disc of images will help much, but the written report would.
Although a biopsy can give a definitive diagnosis of lymphoma, I don't think there is anywhere near the required justification for doing it. Even if you offered to pay for it (and the pathologist) in gold coins so that insurance approval wasn't a factor, a doctor must still balance the risk with possible benefit. Any cutting involves risk.
You can look into needle biopsies before you go there, and the attendant false negatives which make them not a favorite.
As far as the 'main' lump (being possibly the 'primary' tumor): if it's above the ab muscle wall (between muscle and skin), then I don't think it's a lymph node. It's not even known if it's a tumor.
I'd guess that a chest and ab CT was done to look for other masses, with none being found. Why they didn't zero in on the bump to see its structure and composition, I can't guess.
You are quite right that they don't know, so far. That's because your case isn't anything typical.
My amateur opinion is that the ER doc jumped the gun by talking about lymphoma.
Good luck.
Although a biopsy can give a definitive diagnosis of lymphoma, I don't think there is anywhere near the required justification for doing it. Even if you offered to pay for it (and the pathologist) in gold coins so that insurance approval wasn't a factor, a doctor must still balance the risk with possible benefit. Any cutting involves risk.
You can look into needle biopsies before you go there, and the attendant false negatives which make them not a favorite.
As far as the 'main' lump (being possibly the 'primary' tumor): if it's above the ab muscle wall (between muscle and skin), then I don't think it's a lymph node. It's not even known if it's a tumor.
I'd guess that a chest and ab CT was done to look for other masses, with none being found. Why they didn't zero in on the bump to see its structure and composition, I can't guess.
You are quite right that they don't know, so far. That's because your case isn't anything typical.
My amateur opinion is that the ER doc jumped the gun by talking about lymphoma.
Good luck.
Oh, well I'll be sure to ask for those as well!
I understand what you're saying, my GP didn't want me being 'cut' either. The needle biopsy seems much more logical. But it has it's down sides as well so I don't really know.
The 'main' lump is lower - hardly above my belly button on the left side. Sarcoma cancers have been brought up, but those I don't really want to consider...
It's also been thrown around that the CT could have made a mistake, or missed it. I doubt they'd be willing to do a repeat CT, and definitely not an MRI without any indication of a suspension on the CT.
My case definitely isn't typical... I just want answers and if it is something serious, I want it caught early!
Thank you!
I understand what you're saying, my GP didn't want me being 'cut' either. The needle biopsy seems much more logical. But it has it's down sides as well so I don't really know.
The 'main' lump is lower - hardly above my belly button on the left side. Sarcoma cancers have been brought up, but those I don't really want to consider...
It's also been thrown around that the CT could have made a mistake, or missed it. I doubt they'd be willing to do a repeat CT, and definitely not an MRI without any indication of a suspension on the CT.
My case definitely isn't typical... I just want answers and if it is something serious, I want it caught early!
Thank you!
COMMUNITY LEADER
Just some thoughts:
a CT takes slices, so imagine taking slices of a french bread to find some object inside. If you find nothing, maybe you took too few slices and just didn't hit the right spot. How long did your CT take, in minutes? (Then again, the more the slices the more the radiation.)
There is also the matter of whether contrast was used or not. Did you get an injection beforehand? (Then again, contrast can cause harm.) What types of tumors can be detected with, versus without, contrast? (I don't know that answer.)
But likely it's only that single bump.
So what is it composed of? Long ago, exploratory surgery would have been an option, just to look around and see - but nowadays scans can look inside without cutting. The safest scan is US. But that also gives the least resolution.
As you see, everything is a tradeoff.
Many docs send PTs to a surgeon about bumps. So the surgeon sees many bumps and has possibly a better idea of what it is just by looking, more so than a medical doctor does. Plus, I get the idea that surgeons like to be involved in diagnosis.
As Mocha said, you don't usually expect tenderness in lymphoma nodes. I don't know about sarcoma. But you do expect tenderness or pain with infection. So if things get better from the antibiotic, then the US would have been a waste. (i.e., ultrasound)
Knowing how docs think, how they proceed in an ordered fashion, lets you get along better with them.
Also, the more you educate yourself before an appointment, the less time you waste with beginner questions: "doc, what is a lymphoma?" wastes time that could be used instead with "doc, what type of lymphoma is possible in that area, in someone my young age?".
Or "would a sarcoma be tender?" which you can look up yourself, replaced with "in what circumstances could a sarcoma result in pain and ascites?"
Most docs respect an educated patient who is not pushy about it. Some think it is pesky. Some have a god complex (like maybe the intern) - so you can only ask questions and hope you get answers. Some will deliberately show by their tone that they really resent getting questions. Keep asking anyway. As they speed toward the door ask another. Be businesslike and don't take anything personally, even though that can be difficult. Be tactical.
Always take notes.
...and find out what 'something else' is, a la "another CBC, something else and a LDH"
a CT takes slices, so imagine taking slices of a french bread to find some object inside. If you find nothing, maybe you took too few slices and just didn't hit the right spot. How long did your CT take, in minutes? (Then again, the more the slices the more the radiation.)
There is also the matter of whether contrast was used or not. Did you get an injection beforehand? (Then again, contrast can cause harm.) What types of tumors can be detected with, versus without, contrast? (I don't know that answer.)
But likely it's only that single bump.
So what is it composed of? Long ago, exploratory surgery would have been an option, just to look around and see - but nowadays scans can look inside without cutting. The safest scan is US. But that also gives the least resolution.
As you see, everything is a tradeoff.
Many docs send PTs to a surgeon about bumps. So the surgeon sees many bumps and has possibly a better idea of what it is just by looking, more so than a medical doctor does. Plus, I get the idea that surgeons like to be involved in diagnosis.
As Mocha said, you don't usually expect tenderness in lymphoma nodes. I don't know about sarcoma. But you do expect tenderness or pain with infection. So if things get better from the antibiotic, then the US would have been a waste. (i.e., ultrasound)
Knowing how docs think, how they proceed in an ordered fashion, lets you get along better with them.
Also, the more you educate yourself before an appointment, the less time you waste with beginner questions: "doc, what is a lymphoma?" wastes time that could be used instead with "doc, what type of lymphoma is possible in that area, in someone my young age?".
Or "would a sarcoma be tender?" which you can look up yourself, replaced with "in what circumstances could a sarcoma result in pain and ascites?"
Most docs respect an educated patient who is not pushy about it. Some think it is pesky. Some have a god complex (like maybe the intern) - so you can only ask questions and hope you get answers. Some will deliberately show by their tone that they really resent getting questions. Keep asking anyway. As they speed toward the door ask another. Be businesslike and don't take anything personally, even though that can be difficult. Be tactical.
Always take notes.
...and find out what 'something else' is, a la "another CBC, something else and a LDH"
COMMUNITY LEADER
btw, I would take the disc to the surgeon's and any other appt, in case there was a mixup and they don't have that. It does happen albeit rarely.
Also, you might search something like:
https://ixquick.com/do/metasearch.pl?query=parietal+hernia+differential+diagnosis
Also, you might search something like:
https://ixquick.com/do/metasearch.pl?query=parietal+hernia+differential+diagnosis
Thanks for your help!
My CT probably took 5 minutes, if not less. They gave me contrast via my IV.
The swelling has got noticeably worse, to the point I'm having to find new clothes to wear. It's causing me great discomfort and the pain is going towards my sides and lower back.
I did do some research on sarcoma, and it said there would be a noticeable lump or swelling, also with pain if it is pressing on nerves or muscles. Maybe this is something more logical I could have instead of Lymphoma. But then again, I may not have cancer at all. Whatever it is, I want it to be found soon.
If it is cancer, we all know time is of the essence!
My GP shrugged off the Lymphoma subject. She also told me to stop the antibiotic for infection, because she didn't believe I had an infection at all.
Thanks again!!
My CT probably took 5 minutes, if not less. They gave me contrast via my IV.
The swelling has got noticeably worse, to the point I'm having to find new clothes to wear. It's causing me great discomfort and the pain is going towards my sides and lower back.
I did do some research on sarcoma, and it said there would be a noticeable lump or swelling, also with pain if it is pressing on nerves or muscles. Maybe this is something more logical I could have instead of Lymphoma. But then again, I may not have cancer at all. Whatever it is, I want it to be found soon.
If it is cancer, we all know time is of the essence!
My GP shrugged off the Lymphoma subject. She also told me to stop the antibiotic for infection, because she didn't believe I had an infection at all.
Thanks again!!
COMMUNITY LEADER
I'd guess that only 5 minutes for the CT means they just sampled (took slices) here and there.
have you gained weight, by the scale? Is it only in the midsection -- not all over edema, as in ankles etc?
I think that's alarming about the clothes size increase. When is your appt with surgeon?
The 'lower back' rings a bell but I just can't place it. Maybe Mocha knows.
That link:
https://ixquick.com/do/metasearch.pl?query=parietal+hernia+differential+diagnosis
is not meant by me to explore hernia, I do remember you'd said it was considered but ruled out. But a differential diagnosis which includes a parietal hernia as one of the possible causes would also list other conditions that present the same, i.e. with the bump in that area. Inductive versus the usual deductive approach. That might give you other ideas besides cancer.
Keep us posted.
have you gained weight, by the scale? Is it only in the midsection -- not all over edema, as in ankles etc?
I think that's alarming about the clothes size increase. When is your appt with surgeon?
The 'lower back' rings a bell but I just can't place it. Maybe Mocha knows.
That link:
https://ixquick.com/do/metasearch.pl?query=parietal+hernia+differential+diagnosis
is not meant by me to explore hernia, I do remember you'd said it was considered but ruled out. But a differential diagnosis which includes a parietal hernia as one of the possible causes would also list other conditions that present the same, i.e. with the bump in that area. Inductive versus the usual deductive approach. That might give you other ideas besides cancer.
Keep us posted.
Have they looked at the possibility of issues with the stomach or intestine? I ask because years ago my sister went to the ER with a hard, bloated stomach and intense pain. Come to find out part of her intestine had died due to an infection. She ended up having emergency surgery and had about 10 inches of her intestine removed.
Another thought...has anyone suggested doing a PET scan? Radioactive sugar is injected into you which is attracted to cancer cells in the body. The scan should light up wherever there is an abundance of cancer cells, if any.
I'm with Ken about having to change clothing sizes (that it's quite alarming). I hope you get to see the surgeon very soon.
Another thought...has anyone suggested doing a PET scan? Radioactive sugar is injected into you which is attracted to cancer cells in the body. The scan should light up wherever there is an abundance of cancer cells, if any.
I'm with Ken about having to change clothing sizes (that it's quite alarming). I hope you get to see the surgeon very soon.
Ken_PA: Right, that seems logical to me. As far as gaining weight by the scale, no more then 5 pounds to my knowledge. Today I put on a pair of shorts I wear all the time and they were too small. Sweatpants are becoming my best friend!
I believe my appointment with the surgeon is sometime next week.
I've done lots of researching on my symptoms and can't find one exact thing that points to what's going on except Soft Tissue Sarcoma. I was sent some information about a rare cancer called a desmoplastic small round cell tumor. The symptoms include:
First symptoms of the disease often include abdominal distention, abdominal mass, abdominal or back pain, gastrointestinal obstruction, lack of appetite, ascites, anemia, and/or cachexia.
It definitely caught my eye, but I've probably done too much research on cancer's. (It's always the first thing that comes to mind when I hear lump etc). But I do realize it could be 100 other things!
Mocha: I'm not sure they have. In my research on the internet, I've come across things like that but the only thing that gets me stumped is the lumps. The swelling, pain and hardness points to lots of things - except the lumps. There seems to be a new lump a little above the 'main' one. The only thing about the lumps is they don't buldge out of my skin.
I brought up a PET scan to my GP but since nothing indicated the need to on a CT, she thought it was useless. She also didn't see the point in an MRI. She really doesn't seem to believe me - even though the lumps can be felt easily and my stomach is very noticeable.
Thank you both!
I believe my appointment with the surgeon is sometime next week.
I've done lots of researching on my symptoms and can't find one exact thing that points to what's going on except Soft Tissue Sarcoma. I was sent some information about a rare cancer called a desmoplastic small round cell tumor. The symptoms include:
First symptoms of the disease often include abdominal distention, abdominal mass, abdominal or back pain, gastrointestinal obstruction, lack of appetite, ascites, anemia, and/or cachexia.
It definitely caught my eye, but I've probably done too much research on cancer's. (It's always the first thing that comes to mind when I hear lump etc). But I do realize it could be 100 other things!
Mocha: I'm not sure they have. In my research on the internet, I've come across things like that but the only thing that gets me stumped is the lumps. The swelling, pain and hardness points to lots of things - except the lumps. There seems to be a new lump a little above the 'main' one. The only thing about the lumps is they don't buldge out of my skin.
I brought up a PET scan to my GP but since nothing indicated the need to on a CT, she thought it was useless. She also didn't see the point in an MRI. She really doesn't seem to believe me - even though the lumps can be felt easily and my stomach is very noticeable.
Thank you both!
Thought I'd let you know the second, lower lump has significantly grown. I went to feel of it and was caught off guard at how much bigger it had grown. I am starting to get very concerned...
COMMUNITY LEADER
I just noticed that you hadn't given the size. I'd somehow just assumed an inch or so. I wonder how large granulomas can sometimes get (not 'typically' get).
By "the second, lower lump", do you mean a possible inguinal node? You probably can find some illustrations at netterimages to see where they are (a chain of them). IOW, a node can react to whatever is happening with the primary bump.
Such rapid growth in that bump argues against cancer. Tumors don't grow that super fast, AFAIK. But reactive nodes can get big that fast.
How about going to a walk-in clinic for a 2nd opinion?
P.S. I hope you will also post when you eventually find some answers. Most people just disappear. Good luck.
By "the second, lower lump", do you mean a possible inguinal node? You probably can find some illustrations at netterimages to see where they are (a chain of them). IOW, a node can react to whatever is happening with the primary bump.
Such rapid growth in that bump argues against cancer. Tumors don't grow that super fast, AFAIK. But reactive nodes can get big that fast.
How about going to a walk-in clinic for a 2nd opinion?
P.S. I hope you will also post when you eventually find some answers. Most people just disappear. Good luck.
I was thinking the same thing as Ken...it probably would be a good idea to go see another doctor, or, atleast give your GP's office a call and talk to the nurse. At the rate that your lumps are growing I don't think it would be a good idea to wait the weekend.
Has your pain increased as your lumps grow? Also, are you having any problems with your bowels (constipation or diarhea)? Sorry...kind of gross I know but it could be a significant clue.
Has your pain increased as your lumps grow? Also, are you having any problems with your bowels (constipation or diarhea)? Sorry...kind of gross I know but it could be a significant clue.
It's hard for me to tell the exact size. I'd say a little bigger than a quarter?
It is hard for me to find/feel the 'main' lump now. I know it is there, but it's much harder to find. I don't know if this is because of all the swelling around it, or if it's gotten smaller. To me, my entire stomach feels abnormal. I think we may go back to the hospital sometime soon.
I have been more uncomfortable these past few days. I don't know if it's caused by the lumps growing, or whatever else is going on. I can't seem to get into a 'good' sleep... I wake up constantly throughout the night not able to remain comfortable. At night it is very hard for me to breathe. I have an uncomfortable feeling in my stomach at all times.
No other problems have came up. Like I said once before, all of this seemed to come out of nowhere! Thanks for your help and don't worry, I will post here once I finally find out what is going on!
It is hard for me to find/feel the 'main' lump now. I know it is there, but it's much harder to find. I don't know if this is because of all the swelling around it, or if it's gotten smaller. To me, my entire stomach feels abnormal. I think we may go back to the hospital sometime soon.
I have been more uncomfortable these past few days. I don't know if it's caused by the lumps growing, or whatever else is going on. I can't seem to get into a 'good' sleep... I wake up constantly throughout the night not able to remain comfortable. At night it is very hard for me to breathe. I have an uncomfortable feeling in my stomach at all times.
No other problems have came up. Like I said once before, all of this seemed to come out of nowhere! Thanks for your help and don't worry, I will post here once I finally find out what is going on!
COMMUNITY LEADER
while looking further, I independently arrived at:
http://en.wikipedia.org/wiki/Desmoplastic_small_round_cell_tumor
which you'd mentioned earlier. While predominantly in males, it is not impossible in females. While looking at the differentials:
http://en.wikipedia.org/wiki/Desmoplastic_small_round_cell_tumor#Differentials
I don't know if any of those can cause your symptoms to come up so very rapidly. Also, many have associated large tumors, which your CT presumably would have found. Peritoneal mesothelioma is usually caused by asbestos, but apparently not always. Then there is your age to factor in.
However, there's nothing on that list of alternatives that isn't very serious.
Since you are getting worse, I would think that a visit to an oncologist is really called for. The strategy of "we don't know what it is, so do nothing" seems very wrong to me. It's not going away by itself.
This page on Peritoneal Mesothelioma describes the investigation process:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1994863/
generally a CT of the tumor, plus a sample of the fluid, then a needle or resectional biopsy.
That's not to say whether you do or do not have that condition - but it shows the process of investigating. Some diagnoses are said to take months, with your knowledge, you can probably speed that up by prodding docs.
Good luck.
http://en.wikipedia.org/wiki/Desmoplastic_small_round_cell_tumor
which you'd mentioned earlier. While predominantly in males, it is not impossible in females. While looking at the differentials:
http://en.wikipedia.org/wiki/Desmoplastic_small_round_cell_tumor#Differentials
I don't know if any of those can cause your symptoms to come up so very rapidly. Also, many have associated large tumors, which your CT presumably would have found. Peritoneal mesothelioma is usually caused by asbestos, but apparently not always. Then there is your age to factor in.
However, there's nothing on that list of alternatives that isn't very serious.
Since you are getting worse, I would think that a visit to an oncologist is really called for. The strategy of "we don't know what it is, so do nothing" seems very wrong to me. It's not going away by itself.
This page on Peritoneal Mesothelioma describes the investigation process:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1994863/
generally a CT of the tumor, plus a sample of the fluid, then a needle or resectional biopsy.
That's not to say whether you do or do not have that condition - but it shows the process of investigating. Some diagnoses are said to take months, with your knowledge, you can probably speed that up by prodding docs.
Good luck.
Thank you for your help! As probably anticipated, I really hope it is not either the Desmoplastic or the Peritoneal Mesothelioma... due to the very low survival rate.
What I keep getting stumped over, is why nothing was found on my CT. If there was a large tumor, or numerous tumors in my abdomen, I feel like it would have been seen on the CT. I guess it is possible the CT simply made a mistake?
I do agree that I should visit an oncologist. I have a low grade fever right now of 99.2... not high at all, but a fever nonetheless. I also have started to have leg pain, I don't know if that could be related or not.
Thank you!
What I keep getting stumped over, is why nothing was found on my CT. If there was a large tumor, or numerous tumors in my abdomen, I feel like it would have been seen on the CT. I guess it is possible the CT simply made a mistake?
I do agree that I should visit an oncologist. I have a low grade fever right now of 99.2... not high at all, but a fever nonetheless. I also have started to have leg pain, I don't know if that could be related or not.
Thank you!
COMMUNITY LEADER
yes, that's why the CT report would be very valuable - especially about the structure of the bump but also regarding where they scanned. All you need to do is go to the relevant hospital dept and sign for it - unless you need a parent to do it.
I don't think 'mistake' is a good characterization for a CT - but 'missed' might be.
Also, when I'd said your case wasn't typical, I didn't mean it was rare. I'd meant it was atypical. Maybe I could have been more clear, sorry.
So let's try an example of an atypical presentation, using sarcoidosis.
https://secure.wikimedia.org/wikipedia/en/wiki/Sarcoidosis
Wikipedia is not an authoritative source but it will do at the moment. Any doc suspecting sarcoidosis will do a chest x-ray. If there are no lung nodules, they'll reflexively think it's therefore not a case of sarcoidosis. But "Granulomas most often appear in the lungs or the lymph nodes, but virtually any organ can be affected". If a person has sarcoidosis in the eye alone, the docs won't suspect sarcoidosis because it's atypical - an unusual example of the disease - with not the usual symptoms or test results, e.g..
So maybe you have an atypical case of... something. It doesn't have to be a malignancy, I'd still bet on something with immunity - because of the rapid changes and the clean CT. I didn't want to be alarming, about cancer.
But that brings up another important point in diagnosis: you always want to consider what cause there might be, however unlikely, that would nevertheless be devastating if missed.
So I think that's a good reason to see an oncologist. There are apparently pediatric oncologists, so that tells me that a regular onc wouldn't necessarily be best at diagnosing your age group. Age matters.
Also, an ER is not the mecca for diagnosis.
Cancer can make a fever, but certainly immunity also can. Leg pain cause? I don't know. I also don't know much about all these other types of cancers. I was just trying to help out by looking up a few things. It's not so easy to do it all for oneself.
I'd call the surgeon's office early Monday and ask to be bumped up if a spot opens. Tell them about the pain, ascites etc increasing. I bet he'll use one of those big wide syringes, and refill it many times. He probably won't put in a drain, though.
You'll probably feel better from that alone :) Then onward to find the cause.
P.S. Usually internal bleeds that make pockets of blood do hurt. Also I'd guess the CT can tell the differences between blood and serous of lymph fluid. So bleeding likely doesn't apply.
I don't think 'mistake' is a good characterization for a CT - but 'missed' might be.
Also, when I'd said your case wasn't typical, I didn't mean it was rare. I'd meant it was atypical. Maybe I could have been more clear, sorry.
So let's try an example of an atypical presentation, using sarcoidosis.
https://secure.wikimedia.org/wikipedia/en/wiki/Sarcoidosis
Wikipedia is not an authoritative source but it will do at the moment. Any doc suspecting sarcoidosis will do a chest x-ray. If there are no lung nodules, they'll reflexively think it's therefore not a case of sarcoidosis. But "Granulomas most often appear in the lungs or the lymph nodes, but virtually any organ can be affected". If a person has sarcoidosis in the eye alone, the docs won't suspect sarcoidosis because it's atypical - an unusual example of the disease - with not the usual symptoms or test results, e.g..
So maybe you have an atypical case of... something. It doesn't have to be a malignancy, I'd still bet on something with immunity - because of the rapid changes and the clean CT. I didn't want to be alarming, about cancer.
But that brings up another important point in diagnosis: you always want to consider what cause there might be, however unlikely, that would nevertheless be devastating if missed.
So I think that's a good reason to see an oncologist. There are apparently pediatric oncologists, so that tells me that a regular onc wouldn't necessarily be best at diagnosing your age group. Age matters.
Also, an ER is not the mecca for diagnosis.
Cancer can make a fever, but certainly immunity also can. Leg pain cause? I don't know. I also don't know much about all these other types of cancers. I was just trying to help out by looking up a few things. It's not so easy to do it all for oneself.
I'd call the surgeon's office early Monday and ask to be bumped up if a spot opens. Tell them about the pain, ascites etc increasing. I bet he'll use one of those big wide syringes, and refill it many times. He probably won't put in a drain, though.
You'll probably feel better from that alone :) Then onward to find the cause.
P.S. Usually internal bleeds that make pockets of blood do hurt. Also I'd guess the CT can tell the differences between blood and serous of lymph fluid. So bleeding likely doesn't apply.
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