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Biopsy advice please

applejumper
Posts: 11
Joined: Oct 2013

I first want to say that I considered for a long time whether to post here or not.  I know many of you are going through very real battles with lymphoma and I respect that.  I have lurked the web for a long time on various forums trying to find information that would help guide me, but this is by far the group that is most welcoming of people like myself, who don't have a diagnosis but are scared and looking for answers.  So that's what led me to finally join so that I could pose my question.

What I'm really looking for more than anything is just a piece of advice, a "what would you do" from people who have experience.  So here's the background:  This past summer I visited my GP to have her check a little lump at the base of my neck.  She sent me for an ultrasound and they found multiple enlarged lymph nodes in various parts of my neck.  I was then referred to an Hem/Onc and he sent me for a CT for neck, chest, abdomen, which came out clean except nodes in my neck.  The largest was 1.1 cm x 9 mm.  Next stop was ENT surgeon since Hem/Onc recommended biopsy.  ENT examined me and looked at CT and felt there was no need for biopsy because the node was still so small.  I had also had a persistent fungal ear infection for months prior to this, but it had been resolved for a couple months before all of this happened.  The ENT and GP agreed the node was probably due to the infection.

Fast forward a couple of months and I was feeling my jaw (I am a chronic Bruxer or teeth grinder) and I ran across a new small node under my chin, in the submandibular area.  I contacted my GP who felt it was probably due to a bad canker sore I had at the time but recommended that if it didn't clear up in a few weeks to follow up.  Well it didn't clear.  In the meantime my anxiety has risen and led to acid reflux type symptoms and increased pain in my neck and shoulder (maybe due to stress and my pre-existing scoliosis).  Anyway, I haven't been feeling quite right for a couple of weeks now.

So today I went to see the ENT again to have him check the node and discuss whether to biopsy now.  He still seems unconcerned and feels a biopsy is unwarranted.  I have scheduled an ultrasound through my GP so I can have a better idea of what to do.  At this point I kind of want to follow through with a biopsy so I can get a definitive answer, but I don't want to go through (or pay for) an unnecessary surgery either.  

So...what would you do in this situation?  And thanks so much in advance for any advice.

Blessings,

Em

applejumper
Posts: 11
Joined: Oct 2013

I also thought I should mention that a factor in my decision is that I am a 31 year-old newlywed and my husband I are considering starting a family soon.  

girliefighter's picture
girliefighter
Posts: 218
Joined: Mar 2013

They can do a fine needle aspiration biopsy or bloodwork before they would actually take the whole node out..I would find someone to listen to you, I was put off for over 6 months by my family Doctor that I had a "Fatty Cyst" in my neck. It was an ENT that actually decided to go in after mine. I too had many in my neck and just under my collarbone but MRI or CT scan showed none anywhere else. I was stage 3 in March with Non-Hodgkins Follicular Lymphoma, I has no symptoms other than fatigue, which I figured was just from taking on too much, my family Doctor told me my fatigue was due to the weather and that everyone was tired and he had to take a nap at lunch that day. If you truly feel something isn't right find someone to listen to you and to take you seriously, that is my advice.

Best of luck

Carie

Rocquie's picture
Rocquie
Posts: 523
Joined: Mar 2013

Em, short and sweet: If a Hematologist/Oncologist recommended that I have a biopsy, I would have a biopsy ASAP.

Good luck and blessings to you,

Rocquie

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Rocquie gave the perfect answer.  A biopsy does not take long, and is not massively expensive (it costs a lot less than a life).  The "needle" form can be done as an outpatient, and even surgical removal is at most a same-day proceedure.

There are so, so many people here who were put off, sometimes for months or even years, before being correctly diagnosed. My own oncologist told me early on that I had had lymphoma "at least a year, and maybe much longer than that" (some lymphomas move very slowly, while other move very rapidly).

You came to the RIGHT place to ask this question.  Sometimes people (very understandably) seem to be hoping for what I would call "negative reinforcement":  They hope someone here will suggest that they "forget about the possibility of lymphoma, given what the doctor advised," or something of the sort.  

I was in a similiar position many years ago. I had been hospitalized for 45 days following an accident, and received over a dozen pints of blood.  I asked my doc some time later if I should get an HIV test, since at that time, manditory testing of the blood supply had just started.  He responded: "Yes ! Definitely get tested. I would advise it ."  I had very much hoped he was going to say, "Of course not.  No need for that."  I recall the sinking feeling I had at that reply, but he was being honest and professional. The tests came back negative, I but I shall never forget that feelng.

It is always better to know that to not know, and too often, no one cares about a patient finding out the truth but the patient themself.  If, in a year or so, some of these other doctors were to hear that you had late-term lymphoma, they would likely think to themselves "Shucks. I thought I diagnosed that one right. Oh well ! "

Please share what you learn, if you feel inclined to do so.

max

onlytoday's picture
onlytoday
Posts: 596
Joined: Jun 2010

Em,

I would go back to the Hem/Onc and get the biopsy done.  You need peace of mind one way or the other and that is what I would do.

All the best to you.

Hugs

Donna

Shoopy
Posts: 210
Joined: Jul 2013

I agree with the others...get the biopsy done.

Karl

NANCYL1
Posts: 263
Joined: Jun 2012

Em:

I agree.  Get the biopsy.  My Internist sent me immediately to an Oncologist/Hematologist re my white blood cell count.  I had a series of tests including a bone marrow biopsy.  I have "mild" B Cell Lymphoma.

 

Nancy

applejumper
Posts: 11
Joined: Oct 2013

Thank you to all who have already replied.  The ultrasound is scheduled for Monday so we'll see what that tells us.  I appreciate all of your opinions.  My husband tends to just believe the doctors and I'm a lot more skeptical, probably from reading all the stories of people who were passed over for too long.  He doesn't think I should do the biopsy and that I am just worrying over nothing (which if I'm being honest, I do have a tendency toward) but I really feel deep down the biopsy is the right way to go.  Even though I would love to bury my head in the sand and pretend like none of it is happening.  You all have confirmed what I've been thinking.  Now to convince the hubs...

How long did it take you to heal from an incisional? Did you have a lot of visible evidence of it?  I'm only asking because I'm a teacher and I'd like to keep the whole thing from my students as much as possible.  So any experience you can offer about the actual surgery and recovery would be great.  

In the meantime, I am so glad I posted here.  Thanks for not driving me away because I don't have a diagnosis and for being so understanding.  

Em

Shoopy
Posts: 210
Joined: Jul 2013

They took a node from the base of my neck.  The incision is less than 2 inches...maybe an inch.  You can still easily see the scar but it's along my collar bone so my shirt hides it.  They told me it would go away...but being a guy...I'm not worried about it. 

Karl

GKH
Posts: 326
Joined: Jul 2012

The biopsy of neck glands is minor and lymphomas are srldom removed surhically. The treatments dissolve them. Good luck.

LaurieKW
Posts: 14
Joined: Sep 2013

Hi - I would get that biopsy as soon as possible. 

applejumper
Posts: 11
Joined: Oct 2013

Thanks again for all the advice everyone.  I had an ultrasound of the neck on Monday and the doctors haven't called me back yet.  The tech and radiologist seemed unconcerned but I try not to read too much into that.  I have had a concerning turn of events as I have begun to have some very mild sweating at night.  It's more like just feeling overheated and I'm a bit clammy and my hair is slightly wet.  Also had some mild itching the last couple of days.  Husband thinks stress and the colder weather are to blame but I am far more skeptical.  I know the symptoms listed for lymphoma tend to be more extreme, but the fact that they are showing up even in mild form makes me nervous.  And then another odd thing...been having a dull pain in one tiny spot on my right side on top of my lower rib cage.  Went feeling and thought I felt a bump there.  I don't think there are lymph nodes there but I have had some slight irregularities with my liver over the past few years and that's near there.  Who knows....  I am so mixed up about what is or isn't of concern.  At this point there are too many question marks for me.  I'm calling the ENT today and scheduling the biopsy.  It's time I just got a definitive answer.

 

Em

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

I would say you are interpreting things correctly and making the right moves.

(1) Radiologist not reacting. They are trained to have a "poker face," and are prohibited from commenting on what they see as they perform tests. Hence, them not commenting means nothing, one way or another.  This is also true if you get CTs or PET scans: the technicians will tell you nothing, and will not even hint at what they have seen.

(2) Mild night sweats. Night sweats are a characteristic of "B"-symptoms (aggressive disease) in lymphoma, but many other hormonal issues can cause night sweats.  In other words, your mild sweating may or may not mean anythng regarding lymphoma.  Note also:  Many lymphoma patients, even with widespread, late-stage disease (like me, of instance) never had any symptoms anywhere before diagnosis.  I never felt a lump, anywhere.  Never had night sweats, ever, and never even had abnormal blood results. 

(3) "Liver".  My father and numerous relatives died of liver disease, and the liver itself does not ordinarily "hurt, "even when heavily diseased. I myself have had serious liver issues, and have never had "pain" there.  So, the pain needs to be investigated, but nothing really links what you described to lymphopma, or even liver problems. You are right that (as best I can determine what area you are referring to) there are not a lot of lymph nodes  below the floating ribs (ribs 10, 11, 12) but there may be some.  I just do not know.

Get the ultrasound results and the biopsy.  At least they will yield some answers.  But if it were me I certainly would not assume that lymphoma were the cause at this point.

max

applejumper
Posts: 11
Joined: Oct 2013

I heard back from my GP today about my ultrasound (still no word from ENT).  The findings are mixed.  Right side cervical nodes have decreased but there are a few new nodes that have popped up.  She feels that it would be good to go ahead with the biopsy, although she doesn't think it's absoulutely necessary.  She still feels like it most likely nothing to worry about but now that the nodes have persisted as long as they have and that there are a few new ones, it's probably time to just get an answer.  So before I call to schedule the biopsy (because at this point I'm convinced it needs to happen) I was wondering a few things.  I think I asked about biopsy recovery before but I'm looking for a little more info.  I am considering how to schedule this whole thing so that it can fly under the radar as much as possible, particularly at work.  Since I am a teacher it's difficult for me to take time off and I really don't want to show up to school with a bandage, etc. and start the questions.  At this point I'm not really sure where they will take the node from.  I have a few under my ear, one under my jaw, and one at the base of my neck and these are just the ones that are palpable.  

So basically, what was your recovery like?  Did you have to wear a bandage?  Was it totally obvious you had surgery?  Are there stitches involved?  Also, how does the surgeon decide which node(s) to take?  If several of them are enlarged would it be possible for him to just take one from a less obvious location?  And is general anesthesia necessary or can they use local?  

Thanks for all of the advice and information.  I just want to be prepared to get this thing scheduled as soon as possible.  I'm glad I came to this board.  I truly feel understood here and that is helping me tremendously.  

bobmcghee's picture
bobmcghee
Posts: 43
Joined: Apr 2010

Mine were needle biopsies done while slightly sedated and covered with a band-aid over a small red spot.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

applejumper,

I suspect that eveyone's experience with biopsy is a bit different, or maybe even very different.  The surgeon will decide which node or nodes to go after based upon his or her study of your CT : He will look at how they are distributed, and decide which one to take, based upon that.  In other words, the CT will be a "road map," and he will have a route planned before he starts.  Access is one issue, and "easier is better" is one rule among others. 

My biopsy was from the axial region (under the armpit). It was a same-day surgical proceedure. I was unconscious and very groggy thereafter, and there is no way I could have gone to work later that day.  I was sutured and bandaged under the arm, and there is no way anyone could have seen anything.   My removed node was reportedly "the size of a golf ball," and the incision tore and bled fairly heavily about a week later, and the surgeon had to install a drain in his office after that happened, but that only took about an hour or less. But, keep in mind, the node removed was quite large, and left a significant void that filled with fluid.   My next-door neighbor had a node removed from his armpit a year earlier, which his surgeon told him was the size of a baseball, but he was horribly diseased, and a big guy -- over 300 pounds to begin with (he later achieved complete remission).

Some people have nodes visibly under the skin, and getting them is little more than a lancing technique, and of course the needle proceedure is even easier than that.  So, as I said, what you rexperience with biopsy removal can vary from virtually nothing to significant surgery.

 

"Recovery," even for me, was nothing, really. Except for the bleeding episode, the incision did not bother me at all, and did not affect my daily routine at all.  No one would or could have known about it if I had not told them.

I hope your extraction is one of the quick and simple variety.

max

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