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Lymphomas Message Board
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Old 05-17-2013, 06:30 AM   #1
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please help me!!!

Im going out of my mind with worry and no one will take me seriously!

This all started with a swollen lymphnode on my neck 4 months ago.

It is on the side of my neck just over 1 cm long. Painless, rubbery and moveable.

I went to my GP who said it was just a slightly swollen lymphnode, nothing to worry about. If it would get bigger or more would show up I should come again.

I started feeling my neck for nodes. And be careful what you search for because you might find it!!!

Today I have 4 palpable nodes in my neck. The original one, its still the same size. A HUGE one under my jaw on the same side. This one is 2,5 cm long and ca 1 cm wide. Rubbery, painless and moveable. I have one in the middle of the neck, just under 1 cm, rubbery, painless and not movable. And another one on the sime side of the neck, only lower, under 1 cm diameter. Soft, painless and moveable. None of them seem to be growing.

I have a few nodes in my groin, all under 1 cm.

Shortly after I found the first node I started having loose stools with undigested food in it. I had a coloscopy and the following 2 weels a had a fever and severe diarrhea. I am now back to loose stools. Have not had a normal bowel movement in 4 months.

Ive been to a lot of doctors that have felt my nodes, they didt seem big to them and I was told not to worry.

I have been to 2 ENT specialists and had an ultrasound of my nodes. The sie of them has been confirmed but they both said the nodes looked "fine".

I had a fine needle biopsi of the big node it came back benign.

I had a CT scan thad showed swollen nodes around my intestines (the biggest being 1,6 cm) and for some strange reason it didnt show the big node on my neck.

None of my docs are concerned, they think the intestinal nodes are from my stomach problems and there are no "pathalogicly enlargened nodes".

Even though I can feel big nodes on my neck confirmed by two ultrasounds!

The docs wont give me further tests, so I really dont know what to do now!

Is a CT.scan enough to rule put lymphoma?

Can a beningh FNA rule out NHL (I know it cannot rule out HL)?

 
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Old 05-19-2013, 01:41 PM   #2
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Re: please help me!!!

Anything worrisome would have been picked up by the biopsy/ultrasound, so don't worry.

 
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Old 05-20-2013, 07:09 AM   #3
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Re: please help me!!!

My understanding is the only truly valid test for Lymphoma is an excisional biopsy. The needle biopsy have some higher error rates. But with that said... I usually post to people... TRUST YOUR GUT. But in your case, it sounds like you have seen all the right doctors. If you get over your stomach issues and the nodes are still enlarged, go back for a followup. Hang in there. Keep us posted.

 
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Old 05-20-2013, 07:26 AM   #4
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Re: please help me!!!

Nodes that are enlarged, over 1 cm in length and persist for over 1 month should be worked up. I can see why you are upset. Have you had any blood tests looking for a cause other than lymphoma? (Like connective tissue disease?) Can you see a specialist without a referral? I would make an app't with an oncologist or surgeon to get further evaluation. Your Drs should be more aggressive at checking these out IMO.
Do you have fever, night sweats, weight loss, severe fatigue? Any anemia or changes on CBC? If you can't see a specialist, I would gather all your records and see a new Dr. perhaps at your local university internal medicine clinic. They are usually more interested in finding answers and thorough. Good luck and let us know what happens.

 
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Old 05-20-2013, 07:36 AM   #5
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Re: please help me!!!

I am contradicting myself a bit... but Ladybud is right. Every time you have a test run, ask for a copy of the results. Carry them with you to each appointment. I like the idea of your seeing an oncologist who deals in Lymphoma. Another idea is an infectious disease doctor. But you have to check their credentials. Just like ENTs, they are not all alike. Check their specialties.

I just had 5 nodes removed from my neck. The largest was 1.7cm. Everything turned out OK... all reactive, viral. I was never sick. I never felt sick. As Ladybud said, don't quit until YOU are satisfied.

 
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Old 05-24-2013, 11:44 PM   #6
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Re: please help me!!!

Thank you so much for replying you guys, I REALLY apriciate it!

Ive had a trillion blood test, CBC, LDH, CPR, multiple viruses and everything came back clear! Low vitamin D and bilirubin a little low were the only "abnormal" results.

Ive been tested for lactose and gluten intoloranse and chrons. all negative.

My neck lumpnodes have been looked at by 3 different ENT specialist (with ultrasound) and they havnt grown in 2 months. (saw my third ENT a couple of days ago) Largest is 2,7 cm, long and has a fatty hilum. The others or just around 1 cm, with a fatty hilum. The largest one is the one thats under the jaw (submandibular node). The ones around my intestines are 1,6 cm at the biggest (ct scan)

NONE of my doctors are worried, they say the ct scan does not indicate lymphoma. That confuses me, how can I have so many nodes and they still dont consider it might be lymphoma!? Is it because the biggest node os "only" 2,5 cm or can they see it by the shape of the nodes. I dont know My finde needle biopsy was negative but I know these are not conclusive. Im having a full node biopsy in 4 weeks so Ill get my answers then but Im really trying to hang on to the little hope i have of this being something else

Did any of you have stomach problems with your lymphoma? I dont have any pain, just chronic loose stool with undigested food and some mucous in it. Very strange!
were your nodes more round than long and did they have a fatty hilum? Im trying to comfort myself with the fact that the biggest node "looks" benign....

Is it a good sign that the node hasnt grown in 2 months?

thank you SO much for your help

 
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