Hi - I'm 36 yrs old (female) - In the summer my internist found an enalrged lymph node on left side of my neck - had CT done - it's 4.6 x 2.1 cm and solid - then had FNA done and results came back saying no evidence of T-cell or B-cell lymphoma but still couldn't determine what it was - then went to an ENT specialist who talked to me about possibly doing an "open biopsy" or frozen section to take a larger piece out to examine - I decided to hold off and wait two months and then go back and further evaluate and possib do another CT scan - it's now 2 months and I'm going next week for a follow up to the ENT - the mass is still there - I can feel it right above my collarbone on the left side and I think now it's alittle in the front of my neck too - if you look at my neck you can see that the right side curves in and smooth and the left slightly jets outward.
My question is this - should I do another CT scan (first one was June 2nd) to see if it's the same size or has enlarged more? Should I think about having the frozen section biopsy done? I am extremely hesitant to even think about doing this biopsy surgery as it is a very tricky area - even the doctor admitted that to me with lots of nerves and it scares me very much. What are the benefits of doing the surgery? Also - is it at all possible that the FNA results were wrong and that it could be cancer? Thanks for whatever advice anyone can give me.
To tell you the truth both the size and the other characteristics of this lymph node/mass you have sound quite worrisome and demand clarification.
Have you been experiencing other symptoms such as fever, weight loss or night sweats?
Whether you should undergo another CT scan depends particularly upon your doctors' opinion. A CT scan by itself can not diagnose lymphoma or other benign lymphatic conditions, though it provide some benefit by detecting size changes.
I do believe it would be wise to have this mass removed or at least partly removed so the pathologists will have sufficient amount of tissue sample to analyse. It is already quite a bit off the normal range and since it didn't withdraw up until this point, I don't think you shoud delay diagnosis anymore.
Also, FNA is not 100% accurate. I read it holds somewhere between 60-90% variable accuracy rates in detecting lymphatic conditions.
As for the location - you should discuss the risks involved with a qualified surgeon. It is normal to be concerned but in my opinion you should seek an expert surgeon evaluation promptly. If a biopsy is indicated, consider this a good thing as you could know for certain the nature of this mass.
Thanks for the advice - I'm seeing the ENT specialist (who's specialty is neck surgery) on Tuesday and I'll see what he says - I have a feeling he will recommend doing a more extensive biopsy than an FNA.
Go with the extensive biopsy debbie. I wouldn't take the chance with all the stories I've read at a Lymphoma Foundation. Good luck with your out come.
Remember to get a 2nd opinion. Negative or positive. From a different Lab.
I'm not familiar with the term frozen section, But I think that the pathologist is able to get an answer quickly with this method. I've heard that it's not that accurate when they've done this on breast biopsies. I've never read from others who have lymphoma that their biopsies were performed this way.
go for the regular excisional biopsie where it might take alittle longer to get an answer. It's always wise to get a 2nd opionion too on a biopsy. What was the results of the biopsie other than they know there's no cancer cells?
The results just said no evidence of T-Cell or B-Cell Lymphoma in this sample - clinical correlation is suggested - it did not say it's an infection or anything specific about what it is so I'm wondering they actually got enough sample and from everywhere. I'm anxious about having the open biopsy if that's what the ENT suggests due to the anesthisia and where the biopsy is taking place (neck). I've read that this is same day surgery - is this true? How long is the recovery from an open biopsy? Can my ENT feel with his hands if the mass maybe has become larger than 4.6cm or should I do another CT scan first? Thanks
I had an open biopsy on June 1st and I was only under local anhestetic. The lymph node was located in the back of my neck near my hairline. The procedure took about 30-40 minutes and I was in and out in a total of 4 hours [including pre surgery prep time, surgery time, and recovery time]. Recovery from the surgery was fast and not painful. My neck was a little sore and the site of the excision remained sore for a few weeks afterwards. I was given pain relievers and I think I may have taken only one. Today, the scar has almost fully healed and the excision site is only a little sore if I press on it. I went back to work 2 days after I had the biopsy done. I probably could have went to work the next day but I thought it would be in my own best interest to rest [I am a work-a-holic].
The office manager at my dentists office had a lymph node removed that was in the same location as yours and she is a-ok. The biopsy was successful and it was just a normal reactive node.
An open biopsy will give you the best results and I am here to tell you it's not bad at all.
Thanks Chelle - can I ask how big was your node that it needed to be removed? Do you know how big your dentists office manager was? My ENT already had told me that I would be under General Anesth. and that he might do a frozen section. Are there any cases where you might have malignant cells in the lymph node that the FNA wouldn't detect? I'm just completely paranoid about cancer being that my Mom just had Colon and before that Endometrial and my grandfather died of Pancreatic and there's more on the same side. Thanks
I have heard it said that a FNA is alot like going fishing, just because you don't catch anything does not mean that there are not any fish in the lake. The open biopsy is the best way to go. That way they can look at the entire lymph node. The surgery is very simple and not painful at all! Good luck and let us know how you turn out!
I believe my lymph node was a little bigger then the normal 1.5 cm size but not by much. I had the lymph node on the back of my neck for 6 years and it wasn't growing, but it had become a source of contention for me and ached me a lot. That is why I had it removed. I also used to have a big irrational fear of lymphoma because of this lymph node, so taking it out was the only way I could get over it. The biopsy report came back that it was a reactive lymph node with no signs of malignancy or lymphoma. I have two other lymph nodes that are just like the one I had removed. I have had them for years and my doctor says they are normal. I believe him and don't fret over them now.
The manager at my dentist's office found her's while soaping up in the shower. From what she told me, it was pretty big. I believe over 3.0cm. She went to the doctor and went on antibiotics and when it didn't go down, she went back in and got it removed. I have heard they worry about lymph nodes located in the collar bone area [not to try to scare you, it's just what i've heard!], but her biopsy came back that it was just a normal reactive node. So just know that your chances of it coming back NOT lymphoma are there. Don't think it's always the worse case scenario. I did that and it ruined me.
As for the FNA, it's always better to just have them do an open biopsy. Only with an OB can they get a for sure answer on what is going on. FNA leaves room for error. By getting the OB done, you will be able to know you have accurate results and won't have to guess and say...what if they didn't take a sample from the part with potential malignant cells?..because the whole lymph node will be taken and tested.
Good luck and don't hesitate to ask me any other questions. I don't post much on this board, but I lurk to see if I can offer any help.
I really appreciate everyone taking time to calm and answer me. So from what Chelle is aying then 4.6 cm (x2.1 - it's elliptical shaped) sounds big to me - I'm still alittle confused as to whether I should just go ahead and do the Open biopsy without having another CT scan done to see if it's grown or the same. What kind of a scar does the OB leave on the neck? this would be right in the front lower left collarbone - i'm just curious. Thanks - tomorrow morning is my ENT appt so I'll guess I'll discuss my options with him.
Yes from what my doctor and surgeon told me, a lymph node of that size would be on the bigger side. But please remember, just because it's bigger does not mean it's automatically cancer!
As for my scar...at first it was a purple-ish color and swollen. Now that almost 5 months have passed since the surgery, it's faded to a light pink and should be totally faint in color over the next year. It's not horrible looking at all. I was worried about how the scar would look at the beginning too. Then I thought I needed to put my vanity aside and make my health a priority! True my scar is not in the front of my neck, it's in the back. But I do have short hair so my scar is visible. But like I said...it's almost gone. It helps to rub vitamin E oil on it because it helps it heal. The lady at my dentists off...well her scar is GONE and she had the lymph node in the same location as you. So yeah. Don't worry.
Go see your ENT and discuss things with him. If you want them to go another CT scan first, then request one. It's your body and you have control over it. Just remember to be open-minded and listen to your doctors options in return.
I went to see my ENT this morning - he thinks by feeling my neck that it's probably around the same size - his feeling normally with something you don't know what it is would be to take it out and examine - after discussing - I decided to go for another Neck CT scan first to see if it changed at all. The question is going to be is whether it is the same size - what do I do then? I guess it's really up to me whether I'm okay with this undiagnosed mass in my neck or not. He said the open biopsy would consist of me being under General Anesthsia - and he would cut, go in and maybe do a frozen section where part of it is analyzed right then and there while I'm under and then he could see whether the needs to take everything out or he could leave it..but again because of where it is in my neck, it's a tricky surgery. I guess I'll wait to have the CT scan done and go from there. I'm wondering if I should go see another ENT for a second ENT opinion.