Lymphoma?

For the past 3 months I have had swollen lymph nodes in my neck. I went to the doctor and they put me on amoxicillion 2 times a day for two weeks because my doctor thought I had tonsil stones. When that didnt seem to work I went back in and they tested me for mono my test came back negative but I was give a steroid to help with my swollen lymph nodes since it was hard for me to eat and the constant feeling of something being stuck in my throat. That worked for the 3 days that I was supposed to take it. A couple days later I started having the feeling of something stuck in my throat and still swollen lymph nodes. I went back to the doctor she told me I had mono and said that it just doesnt show up on blood work all the time. She ordered another blood test which came back negative again for mono and everything else was normal. I went back to eating fine and then the something stuck in my throat came back and then went away and is now back again which stops me from eating regular food. I have lost weight from not eating so she gave me the same steroids again so that it would bring the swelling in my lymph nodes down and so I could eat but it didnt even work. Now I have times where I get shortens of breath and I always seem to be spitting up phlem expecillay after I drink or eat anything. Im going to be going to get a biopsy of my lymph node under my armpit to see if it cancer but its just a biopsy with a needle. Is there any other tests that I should ask my doctor to schedule? Has anyone else had any similar symptoms?

[samantha609]

Forgot to mention I went and seen an ENT and they did a scope down my throat and also a barium swallow and they didnt find anything.

[Mochadelicious]

Hello and welcome.  3 months is a long time to have swollen nodes, especially to the point of it effecting your breathing and eating.  A biopsy is really the best test for ruling out blood cancer, but I'm just curious why they are biopsying the node under your arm instead of one on your neck?  I would imagine that all the swollen nodes have one likely cause, but it just seems strange that they wouldn't check one of the neck nodes first.  

One thing I think you should bring up to your doctor who will be doing the biopsy is why they are only doing a needle biopsy instead of an excissional biopsy.  If they suspect cancer or even think there is a slight chance it could be, they should be taking the whole node out and testing the whole thing.  A needle biopsy takes a very small sample, which means there is a good chance that the sample will be clean but there is still cancer somewhere else in the node.

Blood tests and scans can be helpful, but are usually used after someone  has had a biopsy and officially diagnosed with blood cancer via pathology testing.  These other tests usually help to stage the cancer (to see where else it might be in the body).

I have not personally experienced swollen neck nodes, but I have heard that swollen nodes can push on other organs and cause problems.  Possibly a node is pushing against your esophogus.  Good luck and please keep us posted on your biopsy.

[samantha609]

Thanks and i have no idea why they are doing needle my doctor said that she wants to rule out cancer. They are going to do the one under my armpit because she said that one she can really feel and she doesn't want them to be poking my neck when I have already been having problems with it. I will keep you updated whenever I get the answers.

[samantha609]

I have my biopsy on Thursday morning and I am also going to be having a chest x ray probably won't know results until after Christmas.

[Mochadelicious]

Hi Samantha,
I'm glad to hear they are looking further into this.  Waiting for the results is so hard I know.  Keep in mind the odds are in your favor so try to not think about it too much and enjoy your Christmas.

[samantha609]

Thanks and I think I might have CMV but my doctor wants to wait to test me for that until after I get my results back from my biopsy. I'm nervous about getting the biopsy done. Waiting is the hard part because I just want to get better.

[samantha609]

When i went to go get my needle biopsy the swollen lymph node that they were going to use was gone. So they sent me home. I did get a blood test for CMV though today so when i get the results back i will let you know.

[Mochadelicious]

I would think that the node going down in size would be a good thing as I don't think that usually happens when it's related to blood cancers.  Hopefully your blood test will help reveal what is going on with you.  Good luck and do keep me posted.  

[samantha609]

Yeah i think its a good thing and I will keep you posted whenever i get my results back.

[samantha609]

All my blood tests have come back negative. My doctor wants me to go see an ENT again so i have that scheduled. Now just trying to figure out what is going on. Still cant eat or anything. Nothings getting better. A lot of people keep telling me that i should go to cleveland clinic. My left arm though is now hurting me i have no idea whats wrong with it but my doctors on vacation until the 7th so im going to have to wait to talk to her about it.

[Ken_PA]

Hi, as far as the arm you can look up 'cellulitis' and see if that matches, especially if its swollen.

[Mochadelicious]

I hope a new ENT can help shed some light on what's going on.  Maybe they would be willing to do an ultrasound or some sort of scan on your neck to see what is blocking your throat.  Good luck and keep us posted.

[samantha609]

Sorry I havent posted in a while but its just been the normal everyday thing. My ENT appointment is on wed the 16th in the morning so hopefully i can get some answers. My left arm is still hurting it actually hurts all the way up to my elbow sometimes, its not swollen and my right arm is starting to hurt sometimes too. My dad says he thinks it might be from me loosing weight but i havent lost any more weight than before im still around 85 pounds. My lymph nodes are starting to bother me again and starting to swell more than they were on and off. Ill keep you posted when i find out any new information.

[Ken_PA]

Are you saying that you weigh 85 pounds? What's your height?

Or did you lose 85 pounds?

[samantha609]

I weight 85 pounds and I'm 5'2". I lost 14 pounds I was 99 pounds before I got sick

[Ken_PA]

It's a mystery, Samantha. If I were guessing I'd say that there is some pathogen somewhere (an occult infection), and the rest is all a result of the immune reaction. Was there something noticeable 3 months ago that started it all off?

Do you have a history of allergies or bad reactions to hornet stings or strange rashes or burning eyes or anything like that? Or do any family members have autoimmune conditions like Raynauds or Lupus or anything similar?

Did you move or start spending time (like on a job) anywhere new at 3 months ago?

I take it that there are no actual bumps or lumps inside your throat - only the feeling that there is something, else they would have found it by now with the scoping, etc.

Can you try pressing all over yourself to try and find any tender of painful spots? Is the pain in your arm(s) on the surface or deep? The inflammation might be in the blood vessels or even the lymphatic vessels at this point.

I'm throwing out ideas to see if that sparks anything. But at this point, it doesn't seem like cancer because the node under the arm went all the way down. Was that node on the same side where the arm pain began?


P.S. Can you not take a lot of liquid nutrition because your stomach can't handle it? Losing that weight can weaken your immune system, as you likely know. There are protein powders, for example.

[samantha609]

Yes i was eating a slim jim and as soon as i ate the last piece it felt like it had got stuck and thats where it all started.

The only thing i know of is that my grandpa got a tumor behind his eye a few years ago and i dont have allergies to anything but the stuff that they put people to sleep with. I dont have any rashes or burning eyes. My left arm started to hurt about 2 weeks ago and now my right arm is starting to get that too and i dont know what to do about it. It hurts more at night or if i use it alot and it does worry me.

The only thing that changed is that i got a new boyfriend and i was fine for about two weeks until i ate that slim jim like i said earlier.

My upper arms do get sore sometimes even if i dont push on them and my underarms sometimes hurt to but i think it might be from my lymph nodes swelling up. My legs get sore sometimes too. My lymph nodes in my neck hurt on and off still. Im not sure if its deep or on the surfuce im not sure how to determain that.

Yes the pain in my arm is on the same side where they were going to take the lymph node sample from and now it has gone to the other arm. Its not as bad on my other arm though but its getting there and the pain makes me not want to use my arm at all because the more i use it the more it hurts.

If i take to much liquid i do get sick to my stomach and i have to lay down for about an hour until it passes. I take protein shakes to help keep some good things in me. I am not loosing any more weight since ive been taking the protein shakes so im good on that.

[Mochadelicious]

I'm assuming you told the doctors about the slim Jim incident?  It almost sounds like you got a piece stuck in your throat but I'm sure the ENT would have seen that when he used his scope (and how that would make your lymph nodes swell and your arms hurt I don't know).  How did your chest x-ray turn out?  You mentioned earlier that you were going to have one.  

Possibly something is pushing on your esophagus from the inside (like an enlarged lymph node or an enlarged thyroid).  If the doctors think that there is any possible way it could be cancer then I would ask them that straight up.  If  they say yes, then ask about doing a PET/CT scan and keep pushing for a lymph node biopsy.  Keep in mind that it is possible to have normal blood work and still have cancer (this happened to me).

Good luck Samantha.  I hope your appointment goes well tomorrow.

[samantha609]

Yes i told the doctors about the slim jim incident and they told me that i had tonsil stones and thats whay i felt like something was stuck and then they told me it was because i had acid reflex that was giving me that feeling but anything they gave me didnt help that feeling so it wasnt those.
My chest x ray came back fine they didnt find anything on it. My doctor wanted to do the biopsy just to rule out cancer but shes not really sure if that maybe be what i have or not. Im not getting any answers because nobody can find anything i have another ENT appointment in the morning to see what they want to do and if they dont find anything my parents are talking about taking me to cleveland clinic because thats about the only choice we will have left.

All the doctors say that there is something medically wrong but they just dont know what it is because they cant find anything wrong in my blood work and everything else that they have done.

Thanks i will update you on how the appointment goes.

[samantha609]

I went to the ENT today and he ordered a Laryngeal Videostroboscopy and a Flexible Endoscopic Examination of Swallowing. Im getting these done on the 28th and then I have a follow up with the ENT on February 6 to go over these tests and see whats going on and what were going to do depending on what they find or dont find. He did mention that everything from the outside looked fine and that they have people who specialize in helping people getting over the fear that i have of swallowing because of the feeling in my throat so i guess if they dont find anything i will have to do that so that i can start to eat regular food again but i will still need to find out whats wrong. I will let you know how the tests go and keep you all updated on whats going on.

[Mochadelicious]

It's good to hear that they are at least going to do some more tests.  I really hope they are able to pinpoint what's going on with you.   This process of going to doctor after doctor and having test after test can surely be frustrating, but hang in there.

Has the ENT checked your thyroid?  Last year I had to have part of my thyroid removed because it was enlarged and they wanted to check it for cancer.   My doctors were surprised that I didn't have any problems with swallowing because it was pushing on my esophagus.  Maybe you are having a similar problem.

Well please keep us posted on your future tests.

[Ken_PA]

Keep in mind that even if something is found, it can still be something benign and not cancer.

HPV is mentioned here: http://www.emoryhealthcare.org/voice-center/diseases-conditions/laryngeal-tumors.html


Also, I'd ask the person that does the test about what they saw. Some are helpful and will tell you, others are close-mouthed because they're technically not supposed to. I'd also ask for a copy of the report to be sent directly to you.

[samantha609]

I have had my thyroid tested twice with blood tests and they said that it was normal. I think I have already been tested for HPV. The packet I got that explains what the tests are say that they go over the test with you that day when your there. I need to get paperwork of all the tests I have had because I don't have any of that.

[samantha609]

Had both of my tests done today. They said that everything looks normal. My vocial cords are the color that they are supposed to be and they are working the way they are supposed too. They also said that its not acid reflex because i didnt have any signs off it. My swallowing they said is perfect and that everything is working the way it is supposed too work and they didnt see anything wrong. They said that it might just be my muscles in my neck that are tight and making me have these feelings in my throat but they arent sure. They want me to do my follow up with my ENT on the 6th and see what he says. If he thinks that its the muscles in my neck being tight then they have therapy for it where they massage my throat and help my muscles to relax and untighten. I will keep you posted and let you know what my ENT says. Im still unsure if that what is causing my problems because my lymph node is swollen and i dont know if my lymph node would be swollen just because of tight muscles in my neck. Guess i will just have to wait and see.

[spoilher101]

WOW! I am happy u went to an ENT! I am shocked they havent figured out the problem yet? I was experiencing some of the same symtoms (symptoms), but after, 29 days, i couldnt talk, swallow. Luckily, the doctor took ex-ray of my throat, & did same thing with the scope up my nose, down my throat. Turned out, i had a very bad disease, called epiglititis, & was admitted immediately to ICU.
Obviously, i dont think u have that, cas of the slim gym incident, & the spealist , i think would had noticed if you had it!
I, am having problems again, 3 years later, but it seems to be up more in my right ear, & going down my throat. Getting sick of doctors not doing anything, so i made an appointment with the same EMT, that originally saved my life. Wish u the best, & good luck! PS. Ken, & Mochadelicious, both seem to be wonderful helping people!

[samantha609]

Yeah i think if i had that they would have figured it out by now. I can talk and swallow just fine just still having problems. Im getting sick of doctors as well because they just keep telling me the same thing that they dont know whats going on or why im feeling the way i am. Ken and Mochadelicious both help a lot and its nice to get some insight and know that i have people that i can talk to with having them think "its all in my head" as my dad says. My dad thinks all of my problems are just in my head and that i have made myself this way but whatever. Even all the doctors that i have seen have told him that its not all in my head and that there really is something wrong but he wont listen. Sorry about that rant. Thanks!!

[Mochadelicious]

It's good to hear that your tests came back fine, but probably still frustrating that no real diagnosis as of yet.  I hope it is just your neck muscles causing this and rehab is all you need.  What does the doctors think about that swollen node?  Is it possible it's just scar tissue left over from a previous infection?  Sometimes lymph nodes just don't go away completely.

Thank you for the kind words Spoilher and Samantha.  Ken and I have both experienced lymphoma first hand and we are here to try and help others who are experiencing similar diagnoses (or just trying to get a diagnosis).  We know how hard it can be and the importance of talking to others who have some experience with it.

[samantha609]

Went to my follow up with my ENT yesterday and he said that everything in my throat is normal. I just need to get some therapy to help the muscles in my neck. He said it would be once a week for about 3 months so I have a lot of work ahead of me. Hopefully this works out.

[Mochadelicious]

Good to hear Samantha.  I hope the therapy helps.  Let us know if you have any more questions.