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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!
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907672_tn?1381029323
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?  
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Avatar_f_tn
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!
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1081992_tn?1389907237
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

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Avatar_f_tn
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!
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1081992_tn?1389907237
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.





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Avatar_f_tn
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!
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907672_tn?1381029323
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.
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1081992_tn?1389907237
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.
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Avatar_f_tn
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!
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Avatar_f_tn
Oops, I meant suspicion, not suspension! Sorry!
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1081992_tn?1389907237
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"





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1081992_tn?1389907237
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
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Avatar_f_tn
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!!
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Avatar_f_tn
All the doctors I saw have ruled out a hernia, BTW!
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1081992_tn?1389907237
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.
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907672_tn?1381029323
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.  
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Avatar_f_tn
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!
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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...
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1081992_tn?1389907237
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.

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907672_tn?1381029323
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 (diarrhea))?  Sorry...kind of gross I know but it could be a significant clue.  
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Avatar_f_tn
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!
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1081992_tn?1389907237
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.
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Avatar_f_tn
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!
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1081992_tn?1389907237
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.






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Avatar_f_tn
I wonder if anything would show up on the CT now, since the swelling/lumps appear to be worse. My doctor didn't want to do anything since nothing alarming was found on the CT or blood work. I asked for an MRI, but she said that wasn't needed. She also didn't want to do a PET scan. She did say if I wanted, she would make me an appointment with an oncologist. I'll call on Monday to get an appointment. The children's hospital here has one of the best pediatric oncology systems with excellent oncologists. I did get the paper work from the hospital, it said they did a CT of my abdomen/pelvis. I thought they did my chest as well… guess not!

I get what you're saying about the atypical thing. That seems very logical and is probably the case of whatever I have. A lot of doctors consider pediatric cancer 'rare' - therefore don't typically look for it, or expect it. A lot of pediatric cancer cases are diagnosed at later stages or months after the initial symptoms occur… simply because it is missed and doctor's aren't looking for it.

I happen to know a lot about cancers, I am majoring in oncology… and I've came across another, mostly found in pediatrics, called Rhabdomyosarcoma. A read a story of a girl who had fluid buildup in her abdomen, and was eventually admitted to the hospital for a variety of tests, and the pathology report on the fluid came back as Rhabdomoysarcoma. Something else to consider I guess.

'One of those big wide syringes' sounds quite painful! Hopefully it allows me some relief, though.

Again, thanks for your help!
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1081992_tn?1389907237
yes, the  rhabdomyosarcoma was in the DDX for desmo:
http://en.wikipedia.org/wiki/Desmoplastic_small_round_cell_tumor#Differentials


quote "'One of those big wide syringes' sounds quite painful!"
well, the needle doesn't have to be wide, just the syringe   :)

what does the CT report say about slice thickness?

Yes, you do seem very sharp as well as knowledgeable. Before long you might be a doc telling your patients about this story :)


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Avatar_f_tn
I don't see anything about slice thickness on the report... I guess I will get the answers I need, hopefully, next week! I just hope I do not have any of the terrible things. I appreciate your help!
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1081992_tn?1389907237
I think that worry is not only natural but also good and prudent, because it makes a person do whatever they can to gather knowledge and that helps in deciding what path to choose - and in preparing to do what's necessary - like visit surgeons and oncologists.

But after all that is done, you might as well just forget the worry and choose to believe the best. It can't hurt and besides, there's no reason to believe the worst at this point


Here's an example of a really, really unusual "bump". The story was in the news, I think in the last year, recalled as memory serves:  A woman had an unexplained bump on her front calf. It turned out that a wasp had laid eggs under her skin. You can't get much more unusual than that :)

Have a good night.
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1081992_tn?1389907237
oops, before I forget: or a cyst walling off some parasite, said wall dampens the immune response because the parasites are hidden

it could happen
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Avatar_f_tn
Well... I'm at a loss as to what's happening. The first two lumps I found, are now incredibly hard to find and feel. Maybe it's because since I first found them, the swelling has got increasingly worse. The swelling has not gone down any, and it's really making my back hurt. In my opinion, they are numerous "lumps" or things that should not be there all in my abdomen/stomach. Literally all over - my stomach is basically filled with whatever "it" is. The first ones I found were tender to the touch, but these ones are just hard and do not hurt. However, when the hospital doctors and my GP doctor felt of my stomach a week ago, nothing stood out to them except the original lump. But my swelling has got much worse since then. I'm really aggravated, hoping I get bump my appointment with the surgeon and oncologist to sometime this week!
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1081992_tn?1389907237
oh boy, if it was me I'd order another CBC, to see if leukocytes are finally elevated

cancer seems less likely than infection again... abscesses? yet they don't hurt..

something inside broke up and redistributed?

I'd choose 1st to go to a walkin clinic today to get their view, I wouldn't be surprised if a doc calls in the other docs to see what they say

or in 2nd place: "hoping I get bump my appointment with the surgeon and oncologist to sometime this week!"  I think you increase your chances if you phone in your new symptoms to them tomorrow - and actually if you 1st convince your GP then the GP probably has more weight with the specialists than you do

but that's apparently a big 'IF'. I'd call the GP's nurse tomorrow describe the new developments, and ask the nurse to get back to you with what the doc says

I'd say that the GP is going by the book, but the book doesn't have your case in it
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Avatar_f_tn
I had three CBC's done last week - but with my symptoms getting worse, I'd say another one is in order. I also had the LDH done, and another I can't remember... but apparently they were all normal. I just want a diagnosis already - ah!

I looked up abscesses and I doubt that's what's going on... but then again, I don't really know. My symptoms are so vague and don't really point to any one infection/disease. Could be something rare or something simple...

I'll go to urgent care or a walk-in and see what they say. I hope they don't shrug me off like the others all have.

My GP will probably want to see me again, she told me last week she wanted to see me again in a week to see the status of the lumps. But she seems to think I'm 100% fine, so I'm sure that's what I'll be told again. (Not really a big fan of my GP - LOL)

Thanks again!
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Avatar_f_tn
Wilms Tumor symptoms:

Abdominal swelling
An abdominal mass you can feel
Fever
Blood in the urine
Reduced appetite
High blood pressure
Constipation
Stomach pain
Nausea

Something else I came across...
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1081992_tn?1389907237
"she told me last week she wanted to see me again in a week to see the status of the lumps"
so recent developments should interest her


"Wilms Tumor symptoms:
Blood in the urine
High blood pressure"

I would think those 2 are the primary symptoms (as kidneys can create secondary HTN), neither of which you have

I think most revealing at the moment is: what does your CT report say about the bump? is it homogenous etc
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1081992_tn?1389907237
quoting myself: "I think most revealing at the moment is: what does your CT report say about the bump? is it homogenous etc"

and yet your GP said she might order a sonogram, depending on other evidence

so why doesn't the CT show the bump? that should generally be more revealing than a sono

can you one day post the CT report? maybe somebody can email it to you and save you to the typing
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Avatar_f_tn
The CT report says:

1. Small volume free fluid within the pelvis of uncertain etiology.
2. The appendix is partially visualized. The visualized appendix is normal.
3. No discrete mass nor focal inflammatory changes.

The report says fluid within the pelvis but my GP told me in the abdomen. My GP said she'd order an ultrasound IF the blood work showed something alarming or the need to do further tests.

I'm still completely stumped as to why nothing showed on the CT...
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1081992_tn?1389907237
"No discrete mass nor focal inflammatory changes"

my only guess is that the type of CT done was not the type that can detect the bump. I wonder if the ER doc ordered the CT because of the bump or because of the ascites.

did your GP say she couldn't feel it? did the ER doc?

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I just got back from another trip to the ER. They did the exact same tests they did last time, blood work and a CT. The CT showed the same - fluid. The doctor said that the fluid wouldn't be causing my intense swelling, because there's not enough fluid to do that. He basically said he didn't know what was going on and to see a specialist.

So... UGH! Whatever it is, obviously is not going to show up on a CT. I called my GP before going to the ER and she recommended I should go. When I saw my GP, she did feel it and so did the ER doctor.

Really stumped... don't know what to do!
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Also - as of recently, there is blood in my urine...
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907672_tn?1381029323
I was just wondering if you were able to make an appointment today with an oncologist?  Are they able to get you in right away?  If it's not soon (like in the next few days), you might want to ask your GP to pull some strings to get you in earlier.

I don't know what other tests they can do, but I'm sure an oncologist would have other ideas to try.  Don't lose hope...there's answers out there somewhere, you just haven't found them yet.
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I saw my GP today and she doesn't think a surgeon nor an oncologist is necessary. She again wouldn't really listen to my concerns and said she wasn't going to run anymore tests. She set up an appointment for me to see a GI doctor but that's all she would do, even though I've gotten worse! So frustrated!
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When is your appointment with the GI doctor?  I hope it's soon and I hope you get answers soon.  Maybe you should find another GP if the GI doctor doesn't work out.
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I don't believe it has even been made yet... my GP said it could take a while to get in. I am changing to a different GP, hopefully one that will be more understanding!
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Good for you.  Sometimes it is best to do that.  I hope you get some answers soon.  
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Hey everyone...just checking in. I still haven't seen a GI doctor, it's taking a while to get in. My abdomen got better for a little while, but now it's back to extreme swelling. Beginning to think I'll never find out what's wrong!
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Make sure when you do make the change for new GP, get copies of all the test. I have recently done the same the same thing for myself and found out there were things not told to me.

And I have now found a new doctor whom have shown more concern and see that there is an issue.

Best of Luck ( I know how you feel)
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Well, I still don't have any answers! The swelling in my stomach comes an goes, but it's there nonetheless. I've also started having lots of other weird symptoms. Pain in my arms an legs. Pain on one side of my head that gets worse when I move and basically just pain all over and the general feeling of not feeling well. Also extreme backpain. Aggravated!
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907672_tn?1381029323
Your previous posts say you changed over to a different GP and you were still waiting to see the GI doctor.  Have you been in to see any of them yet?  To me these new symptoms just don't sound like cancer, but I'm not a doctor.
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Hey guys! I could use your help again - as I'm really at a loss and don't know what to do.

My health hasn't really improved much since the last time I was here. I switched to a new GP and all tests were clear regarding my stomach. I still dealt with a few problems but nothing major, until about a week ago.

I've now developed excruciating lower back pain - worse at night and in the mornings, also worse when I am sitting or laying down - but walking and standing up brings no relief either. It is constant, 24/7, pain. The pain left me breathless last night so I went to the emergency room. The doctor first was convinced it was a UTI, but that came back negative. He then ran a CBC, which was normal. Finally, he decided to do an x-ray of my back. He told me they found an ileus (?). Which I found extremely weird, as I have had NO problems in that area and this was an x-ray of my back - not my abdomen. He recommended an MRI.

I saw my GP this afternoon, who did a physical exam and decided I definitely did not have ileus - but a herniated disc (this did not show up on the x-ray, he just assumed).

The pain is absolutely excruciating and leaves me unable to sleep. I've also been dealing with bad headaches at night/early morning - noticed a few personality changes and extreme nausea.

My GP did say if it was in fact a herniated disc, I shouldn't still be in this much pain. He prescribed a muscle relaxer and said he'd consider an MRI if the pain has not gone away in a few more days.

Any thoughts? I've never felt pain like this, absolutely never going away, nothing brings relief.

Thanks for any help!
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Hi lauren,
Welcome back.  Sorry you are having so much trouble with your health.  The x-ray was of your lower back, but they can probably see your bowels (intestines) too.  An ilius might explain the nausea but I'm not sure if an ilius can cause back pain, unless it is somehow causing pressure against your spine.  Did they find anything wrong with your actual spine?

As for a herniated disc, I doubt that would be causing you extreme nausea and headache.  Do you remember doing anything (like exercise, extreme movement) to hurt your back?  How's your mattress?  Until recently, I had an old mattress and I suffered with lower back pain for years.  Usually it was during the night and in the morning, just like you.  Some mornings I could hardly get out of bed due to the pain.  Last month we got a new mattress and my back feels so much better.

I'd try and wait it out a few more days and see if the pain goes away.  If it doesn't it would be good to see your doctor again about the MRI.  BTW, how are the lumps in your abdomen doing?  Have they gone away?  Do you still have the fevers and night sweats?    
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Yeah, I'm not sure how it could cause back pain - but the ER doctor made it out to be almost life threatening. I just don't see how I could have that, with no other symptoms. He said my spine looked fine, "textbook" actually - but he still wanted further testing. He also suggested a CT of my head.

I definitely haven't injured my back in any way. The pain was very random and sudden. Came on like a light switch. I just recently got a new mattress this year - it's pretty nice!

My GP also prescribed a muscle relaxer - he said it should help some. As far as my stomach, still swollen - but I've accepted it's not anything, it's been so long now and so many tests were done on it. Lumps gone except for a small one in the same spot as the very first one I found.

I've just had a fever of 99 - which is basically nothing. As far as night sweats, not anymore. I have developed a cough that isn't going away, though, and my difficulty breathing has gotten a lot worse.

Thanks for your response!
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Your so welcome.  I hope the pain goes away on it's own soon.  I know how miserable it can be.  Hopefully the muscle relaxers are working.

I'm glad to hear about the reduction of the lump in your abdomen and no more night sweats or fever.  It's strange that no one was ever able to figure out what it was, but it sounds like it has mostly resolved itself.  

I have a cough now too.  I think it's just that time of the year.  Take care and keep us posted.
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Well, last night was very interesting. The pain left me unable to walk and things were not looking good. I was taken via ambulance to the local children's hospital. They gave me so much medicine that when I woke up this morning, I had no memory of what happened last night. But they did not do any further tests, they seemed more occupied with knocking me out! They wrote a referral to my doctor for an MRI.

I still feel EXTREMELY out of it, can't walk or keep my head straight. Took my muscle relaxers last night and they didn't even touch it. :(
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I am getting an MRI...thank goodness. I've never felt such pain in my entire life. The muscle relaxers haven't helped one bit. The pain leaves me breathless - absolutely nothing I do brings relief, no medicine relieves it. It's constant and hasn't gone away for even one second. This is TORTURE!
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Wow, Lauren.  This is from the pain in your lower back?  Well at least now you'll get that MRI.  Hopefully you'll get it soon and get the answers you need.  

As for the pain, I'm suprised the doctors in the ER didn't give you something stronger than muscle relaxers.  If the pain is as bad as you describe, you should call your doctor and ask for something stronger.  

Keep us posted on your MRI results.
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It's all from my back...yes. It hasn't gone away since it first came on (two weeks ago). It came on like a light switch, I hadn't injured myself or anything.

I didn't have a good experience at the ER. They put me in fast track and didn't even start an IV. They didn't give me any pain medication. We had to practically beg them to at least do blood work.

My doctor prescribed some more pain medication as well as something for nausea. They have me on four different medications now - it's nuts!
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Even though you had an xray, now that I think about it your symptoms sound a lot like a stone.  Stones can get lodged in the kidneys, bladder or ureters.  Nausea goes right along with it.  Is the pain on one or both sides of the spine?  How high up is it?  

Several years ago I had to have surgery to remove a very large stone in my right kidney.  It was so large that it filled the whole inside cavity of it.  The pain was excruciating, much like you described.  The kidneys lie a couple of inches above your belly button and the pain is higher up, more in the middle of your back.  However, if you had a stone in the ureter or bladder it would be further down causing lower back pain.  I would think an xray would catch a stone, though.  It was an MRI that caught mine.    Anyway, it's probably best to stop guessing what you have and see what the MRI says.  :-)
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The pain is in one spot on my lower spine - however, it causes my entire back to hurt. Last night the pain felt almost like there was a large weight sitting on top of my back.

Ouch, that sounds so painful!! I've never had a kidney stone but I've heard how excruciating they can be. I guess I'll just have to wait and see what the MRI results are, but it's hard not to guess until then!
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Well, the MRI of my back was normal. But they found some abnormal things in my urine - crystals and hemoglobin. Not sure what that could mean...
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Still sounds like a stone, Lauren.  Have you seen your doctor yet to go over the results?  If it is a stone, if it's small enough you will probably have to let it pass on it's own, which isn't much fun.  If it's too large to pass, they have ways to break it up without surgery.  

I was thinking that this post is probably getting too long and you should start a new one next time you post, or you can send me a private message if you'd like.  Take care, Lauren.  
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