Author Topic: Lip Biopsy to Lymph Node Biopsy ...  (Read 3458 times)

agreenchance

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Lip Biopsy to Lymph Node Biopsy ...
« on: April 30, 2009, 12:41:21 PM »
Hello.  I was going to wait to post until I got my lip biopsy results (next week), but I have to unload my worry. 

Good news is I think I found a good dr (ENT) to do my lip biopsy.  He said he had done hundreds of them, and I believe him because it was so quick I couldn't believe it was already over, even though I feel like I was in a bar room brawl last night and I am staying away from anything salty of spicy. 

However, I have been dealing with some major anxiety about possibly having lymphoma (or cancer) and expressed that to him.  I was grateful that he listened and he did a very thorough exam of the lymph node (submandibular, neck enlarged for about 6 years) and agreed to do a ultrasound guided biopsy in 2 weeks.  Suddenly I am both relieved and terrified that I will know soon.

It is great that he says he is not very concerned of cancer based on the feel but the only way to know is to actually biopsy it.  He says he thinks it is enlarged due to pressure from my submandibular salivary glands from SJS.  They will be able to give me some preliminary results that day, but will of course will have to wait longer for official lab results. 

Though I know I am only 37, I think the reason I am most concerned, besides a family history of cancer, is that for years I have had night sweats off and on (sweats seems to come in waves and I am in one now). Also, in the last few months, I have noticed another enlarged node in my right armpit and now for the last month I have a pea sized something in my upper abdominal area (hoping it is just a fatty deposit, but could also be lymph node).  I have had chronic sinus infections the last 6 months, with fatigue.  Most frightening is the past couple weeks I have had chronic pitted edema in my right ankle, along with a pulsing dizziness whenever I get up from sitting (that passes in seconds).  Of course until recently, drs have always minimized these symptoms.  But given my research of lymphoma (and the likelihood with SJS) I don't understand why until now a doctor hasn't taken theses symptoms serious.  So if I do end up with Cancer I think I will go through a period of anger at doctors again ... but I am hoping I don't have to go there.

So I am bracing myself for the what if ... I really just want to know for sure if I am dealing with enlarged nodes due to SJS or is it something more life threatening.  I really hope my fears are appeased with a benign result.

Really just wanted to express to someone other than my husband (who I think, God love him, gets tired of hearing all my aches, pains, and fears). 

Has anyone else out there had issue with lymph nodes and SJS? 

What about edema & night sweats and SJS?

If anyone out there has had a lymph node biopsy, or even a diagnoses of lymphoma (cancer) I would appreciate knowing your experience. 

I will let you all know the results when I get them.  Thanks for the supportive forum here.

Amie

Linda196

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Re: Lip Biopsy to Lymph Node Biopsy ...
« Reply #1 on: April 30, 2009, 12:57:09 PM »
Hi Agreenchance, glad to hear that the lip biopsy went well, and if it's in your nature to worry, I won't even bother to tell you to try not to!

One thing that might help is that a lump you can feel in your abdomen is probably not a lymph node, since they lie at the back of the abdominal cavity, and unless you are remarkably skinny, the overlying organs and tissue would prevent you feeling them.

Night sweats and non-malignant enlargement of lymph nodes is not uncommon in many autoimmune diseases, and edema can have a number of causes, ranging from electrolyte imbalance, through kidney and heart issues, to the purely mechanical problem of restriction, possibly from swollen lymph glands...full circle of cause and effect.

30 years ago I had an open biopsy of the scalene node (just above the collarbone) to rule out lymphoma, results were difficult to determine, but the eventual outcome, after I had been told I had lymphoma and was booked for a staging laparotomy, was that I had Sarcoidosis. Because my biopsy was open (surgical removal, not needle aspiration) my experience with that would be totally different than your's will be with a needle biopsy.

Please keep us informed, and if it helps to distract you, browse through here all you want!, we're here and listening (to borrow a line from Dr Fraser Crane  :D)
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Pisces24

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Re: Lip Biopsy to Lymph Node Biopsy ...
« Reply #2 on: April 30, 2009, 05:28:31 PM »
My ordeal started 2003 when some of my Blood#s got odd enough for my gp to send me to specialist to check it out.   Also enlarged nodes, chronic teeth cavities, night sweats and chronic sinus infections. I got tons of tests and did have a lymph node biopsy under my right arm. I had never ever had surgery before so was nervous about that as well as the results. The surgery went great though later I got a slight infection in the node there. I had to go to the area hospital after work (it was on the way home) and have them "stuff" the surgery area with a string type guaze.  I couldn't reach it. That was for about 1 week until it healed up. I didn't have any pain or other problems thankfully. The biopsy came back negative.   
Fast forward 2 years later and I finally get diagnosed with indolent lymphoma - means lymphoma but is not progressing very fast so they monitor you.  CTs, MRIs, tons of blood tests, needle aspiration. Then one month ago my immunologist tells me he doesn't think it is cancer but an autoimmune disease.  One week ago I get definitely diagnosed with SJS A&B.

Yeah I can really understand how you feel. I had 2 years of "we are sure it is some type of cancer but can't prove it" to  specialists telling me I don't need to come back and my gp mad that they didn't find the cause of the problem yet. I call it my 2 yrs of emotional H.  I've read that SJS can be around for years in someone before a dr gets the idea to test for it. That could be what you had all along.

The biopsy sounds like a good idea since you have a "history" in your family. I would not let the drs go on "fishing expeditions" in your body though unless very necessary. I had 2 drs suggest another biopsy and PET for me but  both myself and GP thought it wasn't needed at that point back then. Glad I didn't have those.   To be honest, I get the feeling that the SJS "cells" are similar acting like indolent lymphoma type cells. It is just when they "mutate" a certain way that they develope into lymphoma.

I won't tell you not to worry - I told myself that and it didnt' work.  It is easy to imagine things worse than what they really are. But I will tell you it is better to catch "stuff" at an early stage. My gp thinks if my SJS turns into lymphoma I'll just be taking pills for it due to I am being monitored so well.  So hope for the best and deal with any "issues/problems" when they come up. Good Luck!

agreenchance

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Re: Lip Biopsy to Lymph Node Biopsy ...
« Reply #3 on: April 30, 2009, 07:02:43 PM »
Thank you Pisces24 and Linda196 .. I appreciate you sharing your experiences and the wisdom you have gained through your ordeal.  I cannot imagine going 2 years thinking I had cancer to only learn it wasn't true, you must feel relieved and angry (to say the least).  The information that enlarged lymph nodes and night sweats (and even edema) could all be related to my SJS is somehow comforting.  I hope my results will be more conclusive, but now I won't "freak" out until I know for absolute certain I have cancer.

There are so many experiences out there of doctors really not understanding this, and other autoimmune diseases.  As my ENT yesterday said, there are more people that have SJS than one might think.

Thank you and I will post results when I know. 

Kimi

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Re: Lip Biopsy to Lymph Node Biopsy ...
« Reply #4 on: April 30, 2009, 07:55:22 PM »
Amie,

Looks like you and I are a bit in the same boat. I have enlarged nodes in my neck as well have had them along the bronchial in the lungs. I had an FNA (fine needle aspiration, AKA ultrasound guided biopsy) of the neck 2 years ago showing nothing at the time. Since then I have a lot more nodes enlarged in the neck as well as the left inferior submandibula gland enlarged and also ones in the arm pit and groin. The groin and pit ones tend to enlarge with my cycle mostly.

The FNA of the neck nodes was not too bad really. They have a few people in the room usually and for me they dimmed the lights in the room too. MY hubby was in there with me too.  Next they scrubbed my neck to cleanse it and then they numbed it with Novocaine. A few minute later they started taking the biopsy's. They did a total of 8 but with each of those they go in and out many times before the needle is full enough of cells to use.

The gal  never even looked at my  neck while doing them other than to place the needle at right spot before inserting it my hubby said. He said she just looked at the screen to do it all. There were 3 or 4 people in the room now that I think of it, one to do the biopsy, one to hold and move the wand, one to take the needles and place the specmine on the slide and don't remember if there was one handing the gal every thing or if the gal putting things on slides did that. 

I was kinda sore the first day and used Tylenol and cold packs and the next day I use a few warm packs and Tylenol too. I was tender there for a few more days. All in all this was not bad at all. The thyroid biopsy I had done a few years earlier was much worse, no Novocaine, ouchy!!!! Plus I was sore for a good week after that one.

 Do not be afraid to ask for something to take ahead of time if you are nervous to help relax you. I have learned it is much better than going and being anxious, but you  will need some one to drive you home. I ask for something for MRI's as well as FNA's. Makes life much nicer! LOL. I also suggest to any one having these things done to not have anything planneed for the rest of the day after, plan to pamper your self and rest. You will heal much faster after. Plus I know it takes a bit of a emotional toll on you too! So plan on R and R the remainder of the day. (Now this does not mean you need to do this but I have found I just feel better when I do and I think I heal much faster than when I have not)

I saw the SJS rheumy today for  the first time and she is sending me ASAP to an Hematologist. She thinks I have the lymphoma and wants it checked out stat. I then have to see an ENT that specializes in node surgery. (did not know they had one) So I somewhat understanding your fear. I had no fear till today though, just thought it was they thyroid cancer acting up again, so I am still in shock kinda. But I know it is all in God's hands so I am trying not to worry, but I hate surgery.

Please keep us (me) up on all that hapens!! Lovingly, Kimi



agreenchance

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Re: Lip Biopsy to Lymph Node Biopsy ...
« Reply #5 on: May 01, 2009, 05:26:55 AM »
Kimi,

Oh, Thank you for sharing your details of your experience and I will keep you in my prayers.  Please let us know your results. 

In moments of fear it is so to remember that Everything is in God's loving hands, but believing this is really the only thing that brings me comfort in those moments.

Blessings,
Amie

JannaLee

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Re: Lip Biopsy to Lymph Node Biopsy ...
« Reply #6 on: May 01, 2009, 06:27:07 AM »
Amie,

Sending you love and support!

Janna