Biopsy results

amandaj1123
amandaj1123 Member Posts: 1
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi, I am new and have some questions and wanted to see if anyone has had a similar experience. About 5 months ago I started to notice a small lump in my neck, after all things in between my ENT orders an ultrasound guided FNA. The results came back highly suspicious and the doctor told me it was highly probable that I have lymphoma and we should do an excisional biopsy on one of the 2 swollen nodes. The results are back and it is negative. I am so confused and the ENT has stated he's never seen this happen. We have a plan and I will be doing a 3rd biopsy in the near future on the 2nd lymph node, but with all the unknown I'm not sure how to feel. Has anyone ever experienced varying biopsy results before? I appreciate the help!

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #2
    Common

    Conflicting biopsy results are common.  Excise (surgically removed) samples are much more accurate than needle-drawn, which are close to worthless.

    My neighbor went 3 years with conflicting biopsies, until it was obvious that he was advanced Stage IV with Large B type NHL.   Testing and biopsies are relatively cheap and easy, compared to everything else in cancer treatment. Keep testing until they get a definitive, clear diagnosis.  What is terrible is getting a wrong diagnosis, beginning treatment, and then having to start from scratch, after taking the wrong medicines for a time. That scenario is not uncommon either here.

    Get a definitive diagnosis before starting,

    max

  • po18guy
    po18guy Member Posts: 1,509 Member
    edited July 2017 #3
    Depends heavily upon the pathologist

    I had an entire node out. Local pathology found "abnormal B and T cells" but no malignancy. A pathologist at Fred Hutchinson/SCCA, after conducting more sophisticated tests, found lymphoma. A PET/CT series scan found lots of it. Pathology in the lymphoma world is as much an art as it is a science, so you want an artist working on your sample. Second review by a major pathology lab is highly recommended.   

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    edited July 2017 #4
    Different Pathologist

    My Biopsy went to the local Pathologist in the small town we live in. He could not make a definitive decision. He sent it to the next larger town in our area. That Pathologist which actually has quite a few Pathologist on staff could not make a definitive decision. It was finally sent to National Institute of Health where a Dr. Named Elaine Jaffe works. I was told she is an authority on Lymphoma. Needless to say with all the waiting I was getting a little anxious. Took about 2 1/2 weeks for all that to happen. Got my diagnosis and it was Lymphoma. The one type I had was just identified as a new kind about 10 years ago. Prior to that it was always misdiagnosed and mistreated. Because of them midiagnosing it the mortality rate was high. So it is important to have the right Pathologist and the right diagnosis. I am Lymphoma free today and so glad they sent my biopsy to Dr. Jaffe .

    Sandy Ray

  • Evarista
    Evarista Member Posts: 336 Member
    edited July 2017 #5
    Second opinion on biopsy

    Remember that you are always free to request that the existing slides be sent elsewhere to be re-read by another pathologist.  It probably will not be free to have it done though.

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #6
    Biopsy

    I was told but no verification that the national institute of health does not charge. Not sure about that or how it works.

    Sandy Ray

  • yesyes2
    yesyes2 Member Posts: 591
    edited July 2017 #7
    Biopsy

    You have the right to request another pathologist at what ever lab you choose.  I actually was faced with this decision back in 2008 when three different pathologist could not determine if my Lymphoma was B or T cell.  I did my research and personnely had all remaining tissue and slides sent to a Pathologist who specialized in difficult determinations at MGH.  This was after the local hospital, Stanford and UCSF chould not determine.  She with limited tissue remaining decided it was not angio-immuno T cell but a very rare B cell.  Thankfully she was correct as my treatment would not have been correct for a T cell.  Guess now days they would refer to it as T cell rich, back than who knows.

    If you go with another biopsy make sure you get a second opinion.  Pathology is both an art and a science.  You deserve the very best.

    Leslie

  • Miracle3
    Miracle3 Member Posts: 17
    #8
    Sandy Ray said:

    Different Pathologist

    My Biopsy went to the local Pathologist in the small town we live in. He could not make a definitive decision. He sent it to the next larger town in our area. That Pathologist which actually has quite a few Pathologist on staff could not make a definitive decision. It was finally sent to National Institute of Health where a Dr. Named Elaine Jaffe works. I was told she is an authority on Lymphoma. Needless to say with all the waiting I was getting a little anxious. Took about 2 1/2 weeks for all that to happen. Got my diagnosis and it was Lymphoma. The one type I had was just identified as a new kind about 10 years ago. Prior to that it was always misdiagnosed and mistreated. Because of them midiagnosing it the mortality rate was high. So it is important to have the right Pathologist and the right diagnosis. I am Lymphoma free today and so glad they sent my biopsy to Dr. Jaffe .

    Sandy Ray

    Just saw this. I sent my

    Just saw this. I sent my biopsies to Dr Jaffe. It's been over 2 weeks. Guess that's normal? Thanks.

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #9
    Miracle3 said:

    Just saw this. I sent my

    Just saw this. I sent my biopsies to Dr Jaffe. It's been over 2 weeks. Guess that's normal? Thanks.

    Dr Jaffe

    If you research her you will find she is incredibly well thought of. Therefore I assume very busy and highly sought after. My Oncologist continued to call and push for the Pathology report. He got it. I guess the squeaky wheel gets the oil they say. I saw 3 Oncologist because of the rarity of my Lymphoma and the fact I was diagnosed with Hodgkins and Non Hodgkins at the same time and very rare. Two of the 3 said that if Dr. Jaffe gave me a diagnosis there was no Second guessing. In their opinion she was the authority. The other Oncologist at MD Anderson did not act like he recognized her name so there you go.

    I received treatments that ended 7/3/2017 and I am showing no evidence of disease so I am ok with her diagnosis.

    Sandy Ray

  • Miracle3
    Miracle3 Member Posts: 17
    #10
    I'm also waiting for some

    I'm also waiting for some results. Sick of being exhausted and only eating very little!  I sent mine to Dr. Elaine Jaffe and waiting for results. Four labs can't seem to read my biopsies!!! My hematologist was impressed that I had found her through research and couldn't believe that I talked to her. Pray you get answers as well. The NIH doesn't charge but you have to have your doctor fax a letter to her before sending slides and blocks.

  • Vdross123
    Vdross123 Member Posts: 1
    edited July 2017 #11
    Looking for answers

    Hello, this is my first time here. I'm hoping I can find some answers for my daughter. 

  • lindary
    lindary Member Posts: 711 Member
    edited July 2017 #12
    Vdross123 said:

    Looking for answers

    Hello, this is my first time here. I'm hoping I can find some answers for my daughter. 

    Welcome.

    You are best to start a new thread so it is eaiser for you to track. There is a wealth of experience here. With yoru questions include the type of cancer and treatment she is getting. 

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