Ok, it's definitely lymph tissue growth

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I had posted in another thread about tonsilitis or NHL.  Well, the doc took one look today and said definitely lymph tissue.  Now onto ENT to see if if's malignant, from the breast cancer, or as the nurse said 'a new lymph cancer'!  This SUCKS.  I hate this.  I want to go back three years before the breast cancer and start over.  This just NEVER ends....I feel like going to bed and just never getting up again.

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  • TriciaK
    TriciaK Member Posts: 362
    edited April 2010

    I'm sorry the news is not encouraging so far Gracie.

     My friend had NHL and is doing great five years later.   I'll be thinking of you and hoping for good results.

    Hang in there:)

    Tricia xx

  • alligans
    alligans Member Posts: 175
    edited April 2010

    Hi Gracie.  Oh no.  Is it the actual tonsil that's swollen or a new growth?  I'm hoping that it's something benign.

     If your doctor is thinking that it's lymphoma, push for an excisional biopsy.  FNAs are good for finding metastic cancer but not so accurate when looking for lymphoma.  By excision, there will be no question whether it's benign or malignant.  Sometimes when FNAs are inconclusive or come back as benign (and the lesion persists for a long period of time) an excisional biopsy is then performed.  I had a FNA in my neck and wish that I had pushed harder for an excisional just to have a definite answer. 

    If it is lymphoma, it's usually curable or treatable depending on which subtype it is.  This is a very different type of cancer from breast cancer (behavior and staging-wise).  Did your doctor take any blood today?  Did he check ESR and LDH? 

  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited April 2010

    It's definitely not tonsil.  It's above the tonsil.  I'm hoping it's benign too.

    What's an FNA?

    My regular doc didn't do anything today other than look at it.  And made me an appointment with an ENT.  He didn't do any blood workup.  I don't know anything about this kind of cancer :(  Could use any of your knowledge. 

  • alligans
    alligans Member Posts: 175
    edited April 2010

    Hi Gracie,

    If it's not the tonsil then I have no idea what it is.  He did the right thing in sending you to an ENT.  Based on the location and if it is something that needs to be biopsied, he will just take it out.  A FNA is a fine needle aspiration which used a much smaller needle than a core biopsy.  FNAs are commonly done to aspirate cysts.  With swollen lymph nodes, they do this initially to make sure that the swollen lymph node isn't metastic because that kind of lymph node wouldn't need to be taken out as the cancer can easily be identified unlike cancerous lymphopcytes which can be very hard to identify.  This is why a complete lymph node is taken out when lymphoma is of high suspicion of when an initial FNA comes back as suspicious.  However, I'm not sure that a FNA can be done in that part of the mouth. 

    Before I go into what details about I know (once again, not a doctor here just rewriting what I've read from various medical sources). just remember that I'm not saying that this thing in your mouth is cancerous.  It could very well be a benign growth of something.

    Malignant lymphocytes are very hard to identify unless you get a huge sample to be able to see what sort of pattern they are creating.  Unless it's a type of Hodgkins in which one particular cell (Reed Sternberg) is highly visible and only associated with Hodgkins, NHL malignant lymphocytes are identified by monotonous groups.  Healthy lymphocytes should not be monocolonal.  In other words, they should not be identical because this is not how healthy lymphocytes behave.  When the become monoclonal, it means that one lymphocytes is reproducing itself like crazy and not dying when it should thus creating a huge colony of the same lymphocytes that do not help your immune system.  Instead, it causes your immune system to go haywire, thus the swollen lymph nodes.  This is why in agressive lymphomas (ones that grow fast and spread fast) the common reaction is an immune reaction (fevers, weight loss, night sweats, itching, flu-like symptoms, etc.).  Lymphoma is great at disguising itself due to this type of immune response which is why many people with lymphoma go undiagnosed for a long period of time.  When a whole lymph node is extracted, a pathologist can slice into it, stain the cells, and look for a typical or atypical lymph node structure.  When the normal structure is gone this means that abnormal lymphocytes (monoclonal ones) have taken over the normal structure of the lymph node.  Once a pathologist identifies that the lymphocytes are abnormal appearing, he/she then needs to test the cells for CD markers to determine exactly what type of lymphocytes they are (B cells, T cells, or NK cells).  These CD markers and sometimes flow cytronomy (not sure of the spelling) help the pathologist identify which type of lymphoma is present.  This can be very difficult for pathologists not specializing in lymphoma and these slides often are sent out to more experienced lymphoma specialists.  With a FNA, I don't think they can see the nodal structure which is why I may push my ENT to take out my swollen node if this stupid thing doesn't go away.  Every doctor I go to looks at my blood work and CT scan and says everything looks normal even though I  have 3 swollen nodes for almost a year now.  My FNA came back as benign reactive.  Bloodwork cannot diagnose lymphoma.  Leukemia yes, lymphoma no.  Lymphoma usually doesn't show up in bloodwork until it's invaded the bone marrow thus causing your WBCs or RBCs to go crazy.  However, sometimes it can raise your ESR (sed. rate) and/or LDH.  These are red flags but they get raised for many things other than lymphoma too. 

    I don't think that lymphoma metastises the way other cancers do.  It spreads but it usually is contained to lymph tissue within other structures (I think).  Lymphoma has 4 stages, but most people, especially those with NHL are diagnosed at stage 4 and end up cured or in remission depending on whether it's agressive or non-agressive.  Agressive lymphomas can be cured (regardless of the stage) whereas non-agressive ones get treated and treated very well but usually cannot be cured (at least right now) because indolent (non-agressive) lymphomas do not react the chemo the way that agressive ones do.  Sometimes an indolent lymphoma transforms into an agressive one.  Stage 4 just means that lymphoma is located in the bone marrow which by cancer standards is ok with lymphoma.  It's still highly treatable and sometimes curable whereas in other cancers this is not true. 

    Just try to relax until you see the ENT.  It may not be lymphoma.  It may not be anything serious.  If it is lymphoma, it's not the end of the world.  Lymphoma is a serious disease but it's very well treated and often cured.  If you need a biopsy, make sure that it's sent to a larger cancer center where they will have lots of experience identifying lymphomas (there are 35+ subtypes and all are very unique in behavior and).  The major subtypes (which then get broken down into further subtypes) are:  Hodgkins, NHL B cell (lymphocytes coming from the bone marrow) and NHL T cell (lymphocytes coming from the thymus).  Some NHLs are treated as a chronic disease and you are just looked over by a hemo-oncologist and if the disease starts to grow or cause problems then it gets treated. 

    You may want to bring your PET scan results with you to the ENT.  If this part of your body was part of the PET scan and it didn't have a high SUV then this is something new and hopefully they can just remove it and it will be done with.  Very early stage lymphomas are sometimes treated like this (just one node involved with very little activity).  However, if there are many nodes involved (not all nodes are palpable but if you had a full body PET scan than this is unlikely as long as nothing lit up on the PET) then they can't be removed because you need them.

     Good luck!  Here's a great website where actual patients may be able to tell you if they've ever had something like this in their mouth...  forums.lymphoma.com     

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