What's wrong with me?

hgbello · Posted: Thu Jun 29, 2006 11:12 pm Post subject: What's wrong with me?

Hi everyone. I am new here and will try to make this as short as possible. About six weeks ago, I began having a horrible stabbing pain in the left side of my neck. I noticed that one of my glands felt swollen. Since then, I have seen three doctors: a GP, ENT, and an Infectious Disease Specialist. I have been running a low grade temp for 32 days. The stabbing pain went away after a couple of days, but the lymph node has continued to enlarge and feels "tight". I am on my third round of antibiotics (no change with any of them) and have also done steroid treatment. I have had a chest x-ray (clear), a CT scan (showed several enlarged nodes in the left side of my neck, the biggest being just over a cm), tons of bloodwork (lymphocytes slightly elevated, everything else good), and a needle biopsy of the lymph node above the biggest node (came back as a "reactive node"). She did not biopsy the largest because it is directly on top of my carotid. I have been incredibly tired (I have slept 20 hours a few days), have occasional night sweats, and feel like I am living in a fog. I am scratching my itchy scalp constantly, driving everyone crazy. I am a 26 year old stay at home mom with two small children. I am really scared that my biopsy was inaccurate. I am on antibiotics now and both the ENT and Infectious Disease specialist hope it is something viral (no one else has been sick and my white count was fine) and said to give it two more weeks and then if no change, they will repeat the FNAB. What is everyone's experience with the fine needle biopsy? Should I request an open biopsy or am I just being paranoid? Has anyone else had an itchy scalp? Thanks for reading this and thanks in advance for any answers.
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Heather

SHANELLE85 · Regular Joined: 06 Jun 2006 Posts: 31

Hey Heather,
B4 i was diagnosed in Nov 2005 i really had no significant symptoms so u can imagine how much of a shock it was 2 find out!
The only thing i can think of that could b causing the stabbing pains in ur neck is the lymph node mayb pressing against a nerve (MAYBE) but im not gonna lie 2 u tiredness and itching is a symptom of lymphoma.
The only symptom i had was intense itching all over for a period of 10 months, but doctors and skin specialists just thought it was excema Mad

i know now that the itching was my bodies way of fighting of the cancer but in the end it obviously lost.
and wen i was getting tested i had a blood test.. it showed nothing was wrong, i had a needle biopsy.. it came back inconclusive but thats wen drs became suspicious, i finally had a ct scan that confirmed i had hodgkins.
i hope that this helps u
but dont automatically think u have it until u no 4 sure
goodluck 2 u
shanelle Wink

ceaves · Regular Joined: 12 Apr 2006 Posts: 36

I know that most good docs wont do an FNA to diagnose lymphoma, if that is what they suspect it is, because a lot of the time an FNA will miss the cancer cells. If the results came back inconclusive, then you would need to get a tissue biopsy. Another thing Ive wondered as I have read other peoples posts regarding reactive nodes is, what is the node reacting to? What does that even mean? Anyway, have the doctors come up with any ideas about what may be causing your symptoms? Has anyone brought up the possibility of a PET scan? I found a good doc who did a PET just to be on the safe side, and Im glad because a node and a mass in my chest lit up. I find out soon what that means. Just keep on the docs to give you some answers, it may be irritating but you need answers. Good luck to you. Wink

-Chelsea

jpnewman · New User Joined: 07 Aug 2006 Posts: 1

I had an extremely itchy scalp and was generally itchy all over my body. My bloodwork eventually showed elevated levels of eosinophils. I had night sweats and although tired, I could not sleep well due to the itchyness. My doctors were not sure initially if I had Langehans Cell Histiosis or Hodgkins, but eventaully decided (with the help of NIH) it was Hodgkins. I had enlarged and sore lymphnodes in the groin/lower abdomen area. I hope this may give your doctors an idea of things they can look for. 6 months of Chemo seemed to take care of everything.

jerbear · Regular Joined: 04 Sep 2006 Posts: 12

I had an itchy scalp too. BUT I dismissed it as a dermitits flair up. I also had a red rash on my chest for at least a year. The dermatoligist thought it was dermitits. As it would flair when stressed.

2 rounds of chemo in and the rash is noticeably better and I don't itch as much.

I was supposed to have an FNB but my fear of needles changed that plan. And they did a regular biopsy with me under sedation.

To get to the diagnosis of Hodgkins I have had in order

x-ray - set off the chain of events because of a mass in my chest
CT - found the same mass
Biopsy - results came back HL
PET scan - told the stage

RJS · New User Joined: 25 Sep 2006 Posts: 3

This info might help: see my comment on this site posted: Mon Sep 25, 2006 10:06 pm. By RJS. Post subject: NHL - Lymphoma

jamesatkins · Posted: Sat Oct 21, 2006 9:47 am Post subject: Itchy scalp and sore lymph glands

I dont know if a Pet scan is the same as a cat scan,thats what we call them in Australia,its a scan that takes disected xrays of the suspect area or they might do a full body scan, thats what id be asking for.
Mine was found with two large surgical biopcies of offending lymph nodes.
Hope this info helps in some way,P.S., i dont remember any itching.

JIm Atkins. Wink

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JIMJIM

philt1861 · New User Joined: 12 Oct 2006 Posts: 5

hi, hope you are feeling better, im in the same boat as far as testing, FNB's sometimes wont pick up cancerous cells cause there too big for the needle, u should push for a PET scan. Its expensive and insurance companies dont like paying for it but its much more accurate than a FNB. They will inject a dye through your body and if it hits cancer it will "light up" on the scan. myown insurance company thinks its unneccesary and wont pay but its worth requesting
good luck

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