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Old 02-16-2007, 06:58 PM   #1
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Need advise-lymph nodes in neck

I'm really glad I found this forum. You all seem very helpful.

I could really use some input from someone here if possible. This past December I noticed a pea sized lymph node in the back left side of my neck. I had no infection before, during, or after I noticed this. As I kept feeling my neck I noticed another one slightly lower to the left, in the jugular area, of the first lymph node. I work for a ped dr-he felt it and said it felt fine and only to get worried if it got bigger or more developed. I also went to my GP and she said it felt normal and some nodes are larger than others and asymmetrical. I was not happy with these responses so I went to my surgeon who I follow up with. ( I had stage 1 Malignant Melanoma in my left thigh 8 years ago) He felt them and was not concerned. He said they were reactive. I brought up lymphoma and he laughed and said I definitely did not have that. SO, I still wasn't satisfied and decided to go to an ENT. In the meantime, I noticed another small pea sized lymph node right above the first one on the left side of my neck. I'm not sure if it was there before or not because it is deeper.

Anyways, I went to the ENT, he felt all three lymph nodes and said he wasn't concerned because the are all less than a 1cm, mobile, and soft. But he ordered a Ct of the neck due to my history of melanoma. The ct scan of the neck said- no lymphadenopathy, several 3-4mm soft tissue masses suspcious of lymph nodes in left posterior neck. The ENT told me just to follow up in 3 mths to recheck them and diagnosed me with reactive lymphadenopathy.

That was in January. Then this week I panicked again because I thought I felt another one under my left jaw. I got an appt with another ENT who someone from my work recommended. I told him everything and how I was very concerned for lymphoma. I could barely feel my lymph nodes and said they were very small and not concerning. I told him I wanted them biopsied, but he said because they are so small right now he couldn't even biopsy them. I told me to follow up in May and have another neck ct done and if there was no change then I need to quit worrying. He was very nice and understanding with me.

Here is my concern. I have read numerous posts online of people being misdiagnosed with lymphoma. I am scared that I could have found this cancer early and no one will biopsy them until they get larger or the cancer progresses further. I don't understand how I could have these lymph nodes in the back of my neck enlarged for almost 3 months with NO infections that I know of. I just don't know what I should do next. I am so scared of having cancer being a mom and wife, and having a history of cancer makes it all so much more real!! Please help. ( OH yeah, I also had a CBC, sed rate, epstein barr (just showed a past history of mono), liver panel, cmp, LDH, thyroid all come back normal) ( I had a normal abd-pelvic CT in october and a CT of the chest in dec come back normal)

I have been itching for the past couple of months. I would say it is mild to moderate. I also wake up sweating in the middle of the night occasionally, but not drenching. Otherwise, I have no other symptoms. I haven't been sick all winter except for my allergies-congestion, some postnasal drip, and tickle in the throat cough. I don't know if I am itching because I obsess online about this everyday and think I have lymphoma or if its a true symptom.

I'm SO sorry this is so long. Any input would be greatly appreciated. I am a very obsessive hypochondriac about my health and my whole life is being consumed by this. I can hardly function, thinking that I may be being misdiagnosed. Thank you in advance.

 
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Old 02-17-2007, 04:06 AM   #2
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Re: Need advise-lymph nodes in neck

Quote:
Originally Posted by kah22 View Post
I'm really glad I found this forum. You all seem very helpful.

I could really use some input from someone here if possible. This past December I noticed a pea sized lymph node in the back left side of my neck. I had no infection before, during, or after I noticed this. As I kept feeling my neck I noticed another one slightly lower to the left, in the jugular area, of the first lymph node. I work for a ped dr-he felt it and said it felt fine and only to get worried if it got bigger or more developed. I also went to my GP and she said it felt normal and some nodes are larger than others and asymmetrical. I was not happy with these responses so I went to my surgeon who I follow up with. ( I had stage 1 Malignant Melanoma in my left thigh 8 years ago) He felt them and was not concerned. He said they were reactive. I brought up lymphoma and he laughed and said I definitely did not have that. SO, I still wasn't satisfied and decided to go to an ENT. In the meantime, I noticed another small pea sized lymph node right above the first one on the left side of my neck. I'm not sure if it was there before or not because it is deeper.

Anyways, I went to the ENT, he felt all three lymph nodes and said he wasn't concerned because the are all less than a 1cm, mobile, and soft. But he ordered a Ct of the neck due to my history of melanoma. The ct scan of the neck said- no lymphadenopathy, several 3-4mm soft tissue masses suspcious of lymph nodes in left posterior neck. The ENT told me just to follow up in 3 mths to recheck them and diagnosed me with reactive lymphadenopathy.

That was in January. Then this week I panicked again because I thought I felt another one under my left jaw. I got an appt with another ENT who someone from my work recommended. I told him everything and how I was very concerned for lymphoma. I could barely feel my lymph nodes and said they were very small and not concerning. I told him I wanted them biopsied, but he said because they are so small right now he couldn't even biopsy them. I told me to follow up in May and have another neck ct done and if there was no change then I need to quit worrying. He was very nice and understanding with me.

Here is my concern. I have read numerous posts online of people being misdiagnosed with lymphoma. I am scared that I could have found this cancer early and no one will biopsy them until they get larger or the cancer progresses further. I don't understand how I could have these lymph nodes in the back of my neck enlarged for almost 3 months with NO infections that I know of. I just don't know what I should do next. I am so scared of having cancer being a mom and wife, and having a history of cancer makes it all so much more real!! Please help. ( OH yeah, I also had a CBC, sed rate, epstein barr (just showed a past history of mono), liver panel, cmp, LDH, thyroid all come back normal) ( I had a normal abd-pelvic CT in october and a CT of the chest in dec come back normal)

I have been itching for the past couple of months. I would say it is mild to moderate. I also wake up sweating in the middle of the night occasionally, but not drenching. Otherwise, I have no other symptoms. I haven't been sick all winter except for my allergies-congestion, some postnasal drip, and tickle in the throat cough. I don't know if I am itching because I obsess online about this everyday and think I have lymphoma or if its a true symptom.

I'm SO sorry this is so long. Any input would be greatly appreciated. I am a very obsessive hypochondriac about my health and my whole life is being consumed by this. I can hardly function, thinking that I may be being misdiagnosed. Thank you in advance.
Ok, you said you have sinus allergies. That will cause your lymph nodes to react. But remember that all you have to do to send lymph nodes into action is to irritate your skin with a comb through your hair scratching your head, bumps scrapes, pimples, insect bites, passing viruses that your body recognizes but is not vulnerable to. Stress is one of the most frequent cause of lymph node enlargement because it puts the body's defense system on guard. What you would really need to worry about is if you were extremely ill and your lymph nodes did not enlarge. It would be a sign that you could not fight the illness off. You might not even run a fever if your body did not recognize the illness or infection. So unless you get another opinion that is different than the one you have gotten so far, just keep an eye on things. If you have an illness that needs to be addressed, your treatment at this stage would be worse than the symptoms you describe.

 
Old 02-17-2007, 01:04 PM   #3
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Re: Need advise-lymph nodes in neck

Thanks so much for a fast reply. I want to think that these lymph nodes are just from allergies, but they are only on the left side of my neck. I have not had any scalp infections, pimples, or anything else that should warrant a swollen lymph node. I am a nurse in a Ped office so I am around alot of things but I have had no illnesses this year. I would like to go to an oncologist for an opinion but I don't want to waste their time either if this isn't a legit concern. I just hate the watch and wait thing. I was so lucky that I found my melanoma so early and if it wasn't for me being persistent, I might not even be here today. I have been misdiagnosed a few times that once even led to my losing my twins. I want to trust what the drs tell me so much but always in the back of my head I get nervous that they could be wrong again like they were before. I hate not knowing for sure what is going on, it makes it all so hard. THanks again

 
Old 02-17-2007, 06:47 PM   #4
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Smile Re: Need advise-lymph nodes in neck

Hi

I am so sorry that you have had to go through all that, I know what it's like to be misdiagnosed, and your left feeling as though no one wants to listen and I felt like a hypercondriac.

I have just had two lymph nodes removed from the left side of my neck, and I have two in my collar bone. I am waiting still to find out what is wrong with me though.

If so many people have said don't worry, maybe you need to put your trust in them, especially as they know your history, I had my nodes removed within a month of seeing my specialist, as I had lots of symptoms and my bloods came back high.

When you are ill you don't have to have both sides of your lymph nodes up, my daughter is four and has a huge lymph node up on the one side and it's due to a runny nose, it's been there a while.

Nodes can stay up for six or more months after an infection.

I hope you get some peace of mind.

Good luck Susie

Last edited by fairy-lights; 02-17-2007 at 06:48 PM.

 
Old 02-18-2007, 01:23 PM   #5
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Re: Need advise-lymph nodes in neck

Thank you so much for your replies. I think I will wait a month and see what happens. I am due to follow up with my surgeon for my melanoma and I can address it with him then again. I am going to hold off on seeing an oncologist for now, at least. I just wish these lymph nodes would go away!!!!!! These little things have given me so much stress and anxiety the past few months.

Fairy-lights, sorry to hear that they can't find out whats wrong with you yet. I know that must be so much to deal with. I will pray that you will find your answers soon and that they will be good ones! You have been very helpful.

Well if you all don't mind I will probably be hanging out on this board for a while. It has actually helped ease my mind a bit. Its nice to get some perspective from others besides your family and doctors. You can see things differently. Thanks again

 
Old 02-20-2007, 11:13 AM   #6
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Re: Need advise-lymph nodes in neck

Well, I couldn't hold off and I'm going to see an oncologist next week for an opinion. I just happened to be looking through my past copies of tests done and came across my chest ct. It said "incidental note is made of soft tissue fullness in the anterior mediastinum. This most likely reflects residual thymic tissue. Possibility of adenopathy cannot be entirely excluded and is considered in the differential" So now I am panicked that something could be wrong! The doctors all told me this was normal, but how do they know for sure and now the lymph nodes in my neck! I am so upset and I hope the oncologist can give me some answers and not blow me off for 3 months like everyone else has. Sorry to rant and rave, but I just want to know whats going on so bad!

 
Old 03-02-2007, 01:32 PM   #7
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Re: Need advise-lymph nodes in neck

Hello all. Well I figured I would go ahead and update everyone on my oncologist visit in case there is anyone out there that is going through the same problems as me.

Anyways, the oncologist was very nice to me. She said that she was not concerned at all about my chest ct scan report. She said that the reason why they put that "lymphadenopathy could not be entirely excluded" was because the ct scan I had did not show the collar bone region. But the neck ct scan did show my collar bone region to be normal.
She felt my neck, armpits, and groin. I had no enlarged lymph nodes except for the three on the back left side of my neck-which she said were very small. She did feel my abdomen and said that my spleen may be slightly enlarged.
She said that she was very doubtful that I had lymphoma. She said that they still like to watch these nodes to make sure they do not change or for peace of mind I could have one biopsied. So, of course, I chose the biopsy. So, here I am waiting for another appt with my ENT to convince him to give me a biopsy. At least I have an oncologist's referral to back me up this time.

I would like to feel at ease that she felt confident that I didn't have lymphoma, but now I am concerned about the enlarged spleen! She said that the spleen just makes her think that I had mono, but to me that doesn't make sense. I had a test done in Dec when I noticed the lymph nodes and it said that I had it in the past (which I don't remember when)but I had no active mono infection. So my spleen should not be enlarged right now. I just don't know what to think.

So I will update on Tuesday, after my ENT appt.

 
Old 03-02-2007, 02:19 PM   #8
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Smile Re: Need advise-lymph nodes in neck

Hi I am glad that you decided to keep us all up dated we do care about one another on this forum!!

I have had an enlarged spleen for over a year now, and it really hurts, as my stomach is distended and I just look even more fatter than normal!! So don't worry on that account.

I am glad that you are going to see an ENT consultant hopefully you can get some answers.

What is mono I have read other posts where people have mentioned this, maybe I know and it is just a shortened word for it?

I am going to see an immune consultant on Tuesday, so hopefully I will get my answers.

It is a worry when you don't know whats going on, I feel for you.

All my lymph nodes are up on the same side, in the neck, collar bone, enlarged spleen etc, also I have had in the last couple of years three moles have bled and fallen off on my left arm. When I have been to my GP they have said it is too late to do anything as they have already come off!! I don't know if this a sympton or just a coincidence.

I'm thinking of you any way, good luck and let us know how you get on.

Love Susie x

 
Old 03-03-2007, 05:11 AM   #9
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Re: Need advise-lymph nodes in neck

Thanks so much for caring, it really does help. Thats why I decided to come here.

I'm glad you are going to see a doctor on Tuesday. Thats when I'm going to the ENT, so hopefully we can both write back with some GOOD answers!! So, as of right now, you do not have lymphoma, but an immune disorder of some kind that they don't know yet? That must be difficult not knowing!!

Mono is short for Mononucleiosis. It is a viral infection caused by the epstein-barr virus. About 90% of the population have it bay the time they are 30. Once you get it, it does put you at a slightly higher risk of lymphoma, but again 90% of the population get mono and don't get lymphoma . Symptoms are fever, swollen lymph nodes in the neck, extreme fatigue, sore throat, elarged spleen, etc. My tests say that I had a past infection of mono, but no recent infection. Thats why I don't understand the fact that I have an enlarged spleen. I think she has no ides why I have an enlarged spleen.

Your moles, I wouldn't think is a symptom of any immune problem, but I could be wrong. I have had melanoma so I am very scared of moles! I guess if those two moles are completely gone than I wouldn't worry!

Well, I'll be thinking of you too!! Hopefully we can all get through this and get on with our lives! You asked how I get on, the truth is I'm probably not a good one to ask. This whole ordeal as caused me SO much anxiety the past couple of months- its horrible!! No one understands me- including my mom and husband-and think its my anxiety over my past problems I have had. Well, hope you have a good weekend!!

 
Old 03-03-2007, 08:40 AM   #10
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Please don't be sad

It took my family a long time to come to terms with me being ill, because I am so tired all the time I didn't want to go out and every thing was answered "Do I have to?" I down loaded information about certain things before I had my hysterectomy and my nan and dad and friends started to accept that I was really unwell and not just lazy.

I felt unloved for a while and it put a strain on my marriage, but I confronted my husband and asked him how he felt and we had a really good talk, it helped.

When you worry and your ill it puts a huge strain on your loved ones, I don't want my children to grow up and think mummy's always ill.

I don't think I have been tested for mono, I'll ask my consultant.

Your not on your own, have a nice weekend and we can catch up on Tuesday.

Take care Susiex

 
Old 03-07-2007, 05:00 AM   #11
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Re: Need advise-lymph nodes in neck

Well, I had my ENT appt yesterday. I'm not sure what to think of it. I discussed with him my oncologist visit and How she told me my spleen may be slightly enlarged and I could get the nodes removed for piece of mind.
He felt my nodes and said that he really didn't think anything has changed with them at all. He said that he doesn't want to do a biopsy on this small of nodes (4mm) because he KNOWs that there is nothing wrong with them. He told me he takes out lymphoma nodes all the time and I definitely do not have them.
Then I actually started crying and told him I was just so scared that it was cancer. He was very sweet and told me that we could do a repeat ct scan and if there was even a tiny bit of change in them-he would biopsy, otherwise if there was no change, he wanted me to quit worrying. He also didn't charge me for the visit and told me to get a second opinion about the spleen. (which I work for a doctor and had him check my spleen. He wanted to know who told me my spleen is enlarged. He felt my stomach for like 5 minutes and told me I definitely do not have an enlarged spleen. I told him how the oncologist said she thought she was feeling the tip of it in a certain area and he said that he felt nothing at all. I do trust him alot because he is so protective of his staff and wants to make sure they always have the best care)

So here is my question to everyone. If this repeat ct scan comes back normal again, should I quit worrying? Did any of you have lymph nodes that were only 4mm and end up having cancer? I have 3 lymph nodes that are 3-4mm in size on the back left side of my neck-not sure what the next ct scan will say.

I just don't know what to do. I've went to my general dr, my dr I work for, my surgeon that I see for my melanoma, 2 ENTs, and an oncologist. Everyone told me this is nothing. Please help!

Fairylights, I read about your visit yesterday. I'm so sorry it didn't go well. Did you call your dr that was supposed to order the testing and ask him why is wasn't all ordered and what he thinks your diagnosis is? I hope you find something out soon. We all love you on this board, you are so sweet to everyone and we want you to get some answers!!

 
Old 03-07-2007, 11:58 AM   #12
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Oh thank you for those kind words xx

I wish that I could give you a hug, you sound as though you need one, I could do with one I think we all could, we should have one big group hug (lol)

I saw my doctor and I have had some results from an xray that I had taken a while ago, I have a shadow on my right lung? No answers yet!!

How frustrating for you especially as you had been so worked up about your spleen, it may well of been enlarged when the lady consultant looked examined it, they can go back down after an infection.

My CT scans and other scans with the gel all showed an enlarged spleen and from last year they show that it is slowly increasing in size.

I feel as though I have had enough of second guessing and I am fed up of being passed from pillar to post.

Sorry I am just fed up and tired today I am feeling unwell and my left side hurts etc.

I worry about you though and everyone else on this forum, as you do start to get close to people you have never met it's lovely to know you have a whole set of friends experiencing similar concerns.

I can't say to you that if your scan comes back fine not to pursue it any longer, as I know you will still worry!!

Just keep an eye on things my lymph nodes where between 3 and 5 Cm's when i had them removed.

Just try and have happy thoughts, have a night out, sing a song!! do something that you enjoy.

I will be thinking of you love Susiexx

 
Old 03-10-2007, 09:52 AM   #13
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Hi there how are you at the moment?

Have you heard anything yet from your scan?

I hope that you have a good weekend.

Thinking of you Susie x

 
Old 03-10-2007, 01:27 PM   #14
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Re: Need advise-lymph nodes in neck

Thanks you guys for thinking about me, especially with everything your going through right now. I have not scheduled my next ct scan yet, I'm waiting for them to call me back after they pre certify it. I hope the two of you are having a nice weekend. MsMagic- that is so awesome that you have a friend like that!! I am so happy for you. Now there is a huge thing you don't have to worry about anymore- Money!! I know what you mean about being very thorough for a previous cancer patient. Even though I had only a stage 1 melanoma, I would think they would take out the node right away. Melanoma is a wicked cancer too! Everyone seems to think in mo way they are cancerous. Oh well, I don't know what to think. I follow up with my surgeon this month for my 6 mth check up.

Well, I hope you two have a great weekend and can get some relaxation!! Keep me updated on everything!! Thinking of you guys!!

 
Old 03-11-2007, 09:53 AM   #15
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Re: Need advise-lymph nodes in neck

THINKING OF YOU TOO X

 
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