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!
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"
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