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Date of last update: 10/21/2017.

Forum Name: Lymphoma

Question: frustrated with my doctor

 ms_barnacle - Thu Jun 02, 2005 12:07 am

I'm 26. I've had generalized lymph node swelling in my head and neck for a year and a half. I had a bad case of mono when I was 18, and the cervical lymph nodes along the back/side of my neck had been palpable ever since. A year and a half ago these nodes, in addition to the nodes behind both ears and on the back of my head, swelled noticably and painfully. I went to the doctor freaked out that I had lymphoma. The doctor noticed some sores on my scalp, cultured them, found bacterial infection, put me on antibiotics and sleeping pills, and sent me home. The node swelling went down, but not completely. Two months later the nodes came back fully swollen. I went to a new doctor who put me back on antibiotics and also put me on meds for anxiety. That was about a year ago. Since then, my lymph nodes on the back/sides of my neck have always been palpable and swell noticeably when I have a cold/flu.

This spring the nodes swelled up huge again. Yet another doctor checked my scalp, cultured a sore, and found an infection. She put me on antibiotics. To see if the lymph node swelling my have another underlying cause, she also did a CBC, some kind of liver-related blood test (?), a TB test, a chest x-ray, and checked for Epstin Barr. All these tests came back normal. After two weeks on antibiotics, the scalp infection was gone. Two months later, my lymph nodes are still swollen. I'm worried about lymphoma, so she did a fine-needle biopsy on one of my swollen neck nodes. The lab results came back normal.

I know fine-needle biopsies aren't 100% accurate in diagnosiing lymphoma. Yet my doc refuses to fully remove a node, saying the fine-needle biopsy is fine, that none of my other symptoms point to malignancy so she doesn't think my anxieties justify a more invasive procedure, but she can't explain the 18 months of swollen nodes.

I feel like if I have lymphoma, it's getting late in the game to be playing dare with my doctor. should I switch doctors, or demand a full biopsy of a node? I'm scared to death and frustrated that I've spent so much time and money at the doc office with no answers. :cry:
 Dr. Wafaa Abdel-Hadi - Thu Jun 02, 2005 4:33 am

Dear ms_barnacle,

Well, first of all...Thank you for your lymph nodes consiced medical history :) . So you are not worried about your neck nodes because they've been there ever since your mono infection. But you are worried from your flactuant nodes on the back of your head and behind your ears.

Your doctor has done a very good approach to a case of lymphoma, when he did a Chest X-ray,blood tests,TB and EBV test,....and these nodes (back of head and behind the ears) are not common to be malignant. That is why your doctor is excluding malignancy....he's just missed an abdominal ultrasound :wink: ,for nodes in your abdomen....and he should check nodes underneath your armpit (axillary lymph nodes).....and that would complete his investigations to exclude a case of lymphoma.

You have noticed that each time he gives you an antibiotic according to culture they go away....malignant nodes wouldn't behave like that.

If the Fine needle biopsy(FNAB) was inconvenient to him...he would have ordered an excisional biopsy (removal of the largest lymph node) ...but it seems that he's content with the FNAB.

I also want to inform you that infections in the scalp sometimes become chronic... you should look for the cause of that infection and consider a better hygiene and management to your scalp...frequent washing of your hair with therapeutic shampoos may be as directed by a dermatologist.

Don't worry, I cannot be 100% sure that it's not malignant...but i highly doubt after your history and the investigations that you've had.
You just make sure that you don't have other lymph nodes anywhere else...axilla,groin,etc...and ask for an abdominal ultrasonography...those would be the last investigations you can make to exclude lymphoma.

I am sure if he had felt that your lymph nodes consistency was wired...he would have investigated more.

Best regards,
 ms_barnacle - Thu Jun 02, 2005 10:21 am

Thank you so much for your reply.

Are fine needle biopsies relatively accurate? I also wonder weather it would matter which node she biopsied. The one thing I didn't explain clearly: the lymph node swelling never goes away completely. All of those nodes, even the "new" ones, will shrink and get big again, etc. but they're always palpable, they never go away, now for a year and a half. And the scalp infection does go away... then comes back within a few months. I've also wondered if the scalp infection could signal something else wrong... I shower twice a day because I go to the gym after work, I use dandruff shampoo, but I still get these infections. I do have allergies, and I've wondered if that could have anythin to do with it.

And is it normal for my lymph nodes on the back of my neck to be palpable ever since having mono? It's never given me much anxiety until now, but now I can't seem to find anyone who has experienced the same chronic enlargement.

Lastly, may I ask approximately how much an abdominal ultrasound would cost? I only have catastrophic health insurance so I pay for everything out of pocket.

That's a lot of questions. Sorry!
 Dr. Wafaa Abdel-Hadi - Fri Jun 03, 2005 4:29 pm

always a pleasure:-)

Well, FNAC are relatively accurate....but when it's inconvenient and we feel query about it....we just excise the node.

I just have to say that it's very common for nodes after severe mono,TB or even minor but very prolonged infections stay big...forming something called granuloma which means...infection trapped inside the node that has healed by fibrosis and reactive the nodes never go back to their normal size!

Although you have plenty of nodes... but the way they behave and react to antibiotics just makes me doubt that it could be lymphoma.

What type of infection do you have in your scalp...what does the culture say?
Scalp infection doesn't signal something that i am aware of...?
You told me your CBC was fine? what was the WBCs count (white blood cells)!?, because if your scalp infection was due to something systemic(in your body) and not local(confined to your scalp)... the white blood counts would have been elevated!

I don't know how much does an abdominal ultrasound costs in your can ask the hospital or the center by phone,sorry.

Well, you can do the ultrasound whenever you can...but your doctor is doing a good job...I'd just ask you to go to a good dermatologist and ask for a proper treatment to your scalp condition,please.

Best regards,

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