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biopsy-false negative?

ald345
Posts: 2
Joined: Jul 2014

I have a question i have been struggling with and thought i would come here.

I noticed a swollen lymphnode at my groin on the right side in March 2014. Saw my doctor in April ( about 6 weeks after i found it) he put me on a round of Keflax antibiotics and said to call if it didnt go down. Well it didnt go down so he scheduled me to see a GEN MED- i couldn't get in with the GEN MED  until May 23. In between those two dates i had noticed swollen lymphnodes in my neck, collarbone, and both armpits. Called my PCM she put me on Doxi- used primarily for Lymes disease and a much stronger Antiobiotic. took this for 10 days with no results.

Finally get to the GEN Med surgeon he says to remove one of the lymphnodes and removes the groin one because it was the biggest 2.5cm.The results came back negative for lymphoma! I was beyond happy, until he couldnt give me a reason for the widespread swelling of my lymphnodes.

Well a month later i have lost 12 pounds and my neck and right armpit nodes are getting bigger. I am supposed to see a hemotologist oncologist, but the referral is still pending a month later.

My question/concern is: could i have gotten a false negative on my biopsy? Is there anyother reason why i would have all of these swollen lymphnodes? My Gen Med even said that he had thought it was going to be Lymphoma until he saw the results. Should i be pressuring my doctors to take this more seriously or just know that they are sure of the course we are taking?

I am 28 year old veteran. I am mother of a 2.5 year old princess and my husband is simply amazing. If something is seriously wrong, such as Lymphoma, i want to hurry up and fight this so I can live a hopefully long and happy life.

I'm sorry if i have bothered anyone, i just can't search the internet anymore and comeup with the same results : LYMPHOMA so i thought i would ask!

 

Thank you for any responses i may get!

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi ald345,

I apologize for the late response, I don't know the answer to your question about a false negative but I guess anything can happen! At the end we are all human and mistakes can be made, I just hope you get answers soon! I hate the waiting it can be the most difficult in dealing with all of this. Please let us know if you do find out...take care

Sincerely,

Liz

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

ald345,

First, sorry you are having these symptoms and causes for worry.  False negative biopsies do happen. I have read of several here over the years. My current next-door-neighbor, in fact, had several over a two year period, and is now in chemo for very widespread lymphoma.

False negatives are nonetheless fairly rare, and in most cases what a biopsy says is a substantial piece of evidence in determining what is wrong.

There are two common formes of biopsy: surgicial removal (excise technique; the mass is cut out), and a form in which tissue is pulled out via a needle ("core needle technique"). The excise method is significantly more reliable. You mention that a surgeon removed the sample, but often a surgeon is used to draw the needle type sample.  Which did you have ? (It sounds like an excise technique, but I am just not certain.)  Also, it is not clear how many nodes he drew from . Was it just the groin sample ? More is better.  Also, there are over 30 types of lymphoma (five common Hodgkins types, and about 25 common non-Hodgkins types), so a pathology lab looking for lymphomas has to have a lot of expertise in the area.

Besides a biopsy, several other sorts of tests can strongly point toward, or away from, lymphoma.  Specialized blood tests are one, which will include a CBC, Sedementation Rate test, LDH, and some others.  Some of these tests are not commonly used by Internal Med doctors.

Another (very expensive) test is the PET Scan (much like a CT).  Almost always, insurance companies have to have "medically justified" reasons to pay for a PET, which has always run over $10,000 each, where I got mine.

I would say, stratigically, that the most important thing is to get to the hematologist (medical oncologist) as quickly as you can get in. He or she is best equipped to figure this all out.  The rate at which you are noticing new nodes widely dispersed should be mentioned to your Internal Med/Family Doc.

Are you having night sweats in your sleep? Do you have severe itching ? Not all lymphoma patients have these (I never had either), but they are faily common, and are the most common forms of what are called "B Symptoms".  The weight loss is also a hallmark, but of course a variety of things can cause weight loss.  The fact that it is accompanied by swelling is quite common in lymphoma, however. The most universal symptom of all is extreme fatigue;  virtually all lymphoma patients mention it.

I would drive the issue, and light a fire under the medical team. I would request to speak to the surgeon himself and ask hm directly about the possibility of a false positive. He will know how likely or unlikely that is/was, in your case.

I have no medical training at all here, and this board is all lay advice and sharing from lymphoma patients.  I would, however, get busy on this if it were me.

Lymphoma is extremely treatable, even in late Stage IV cases, in nearly all of the 30 varieties. Success in beating it is higher than against most other types of cancers.

I have read several similiar self-descriptions to your's here over the last year or more, and MOST ended up NOT being lymphoma. But you need to determine that with greater certainty than has been done thus far.   My two-cents.

max

 

ald345
Posts: 2
Joined: Jul 2014

Thank you for the replies. I actually had the entire groin node removed. My PCM has ordered me a CT scan and is sending me to a civilian hemotologist because my night sweats continue. While it may not be lymphoma it's something systemic she told me. But the civilian hemotologist will hopefully be able to shed some light on what is happening. Sine the nodes on the right side of my neck and under my collar bone  are over 2 cm she is worried she told me,  so I'm worried! Thank you very much for the responses I truly do appreciate it. 

illead's picture
illead
Posts: 844
Joined: Aug 2012

We all know how scary this must be.  Max gave you excellent advise, and sounds like like you are "on it".  Try not to worry too much and know that if it is lymphoma,  the symptoms can get very intense but they are only symptoms.  As Max says, many lymphomas are very treatable and as you said, you can get on with your life.  Please let us know how it turns out.  We are here to support and listen and we care very much, so feel free to join us and know we are here for you.

Becky

Jessica Halter
Posts: 1
Joined: Jan 2016

I know this was a while ago, but what ever ended up happening? This basically just told my story...

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