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Thread: Pet Scan Without HD/Lymphoma Diagnosis?

  1. #1
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    Pet Scan Without HD/Lymphoma Diagnosis?

    Hello. I am a 33 y/o female who has had swollen cervical nodes since 2007. After numerous monthly doctors appointments that concluded with "take these antibiotics and come back if it doesn't get better" I decided to switch health insurances and hospitals. After my first appointment I was told that I not only had a lump in my cervical node but they also detected a nodule on my thyroid. I was given a radioactive thyroid test after which I was immediately scheduled for a FNA biopsy for the thyroid and an open biopsy for the cervical node. During the FNA for the thyroid I the techs argued over which one was "it" and only tested the one that the senior tech said was "it". After the biopsy for the surgical node, I was told that they removed not one but 3 lumps, and there were many more but too many to take them all. I was told that the dr. was "unsure of what it was but he didnít think it was cancer" and that I should follow up regularly with the ENT. I was also told that I had EBV and CMV at some point in the past. Armed with more information I went back to the original care provider for further treatment. My last CT in 2010 showed that all of the lumps in the cervical nodes and the thyroid nodule were still there. The ENT told me to "watch and wait" for more symptoms. I now feel awful. Extremely fatigued, unexplained rashes/itching, severe pain in the cervical nodes after consuming alcohol and a couple others that could possibly be caused by other factors. I now have to start the "appointment parade" all over again to address my new symptoms. What type of doctor will provide the best results? ENT? Other? Since there are too many cervical node lumps and some are too deep to get too, can I cut out the guess work and request a PET scan instead of more CT's that tell me what I already know? What other tests should I request? Thank you so much for your help.

  2. #2
    Administrator Top User Didee's Avatar
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    Hi there. I am really sorry to hear that you are having these problems.
    At this point, if I was you, I would be pushing for a surgical biopsy of a node so a diagnosis can be made or your mind put at rest.
    My GP referred me to an ENT for the surgery. I am in Australia and I am not sure of the medical systems in other countries.
    Good luck!
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

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  3. #3
    Super Moderator Top User po18guy's Avatar
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    FNA is not considered sufficient for diagnosing cancer, as too little tissue is actually removed. It might work for relapsed cancer, where they know what they are looking for. I agree with Didee that one of them should come out for a path workup.
    Dx 07/2008 Peripheral T-Cell Lymphoma - Not Otherwise Specified, stage 4B.
    "Innumerable" tumors above/below diaphragm + Bone Marrow Involvement.
    4 cycles CHOP+Etoposide plus 4 cycles GND.
    NED at mid-point and completion of chemo 12/2008.
    Relapse 02/2009.
    Scheduled for palliative care.
    Clinical trial of Romidepsin 03/2009. CR, remained NED for 56 (28 day) cycles.
    Possible relapse 07/2013.
    08/2013 "re-induction" therapy of Romidepsin.
    Mixed results on 11/01/2013 scans.
    Treatment stopped 03/03/2014.
    02/10/14 Core needle biopsy indicates either no lymphoma or possible mutation into AngioImmunoblastic T-Cell Lymphoma(?)
    03/17/14 Excisional biopsy finds no evidence of lymphoma.
    CT scans 04/24/14 reveal that nodes and spleen have reduced 60%, apparently on their own.
    Officially on W&W, as odd as that sounds.

    "Now, faith is the substance of things to be hoped for, the evidence of things that are not seen" Hebrews 11:1

  4. #4
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    Don't take more biopsies, if three of them were already clean. You could ask them to send sample glasses to other institute for double check.

    Insist PET-CT over CT. Its superior in lymphoma.

    Think positive. More than 33% of people get cancer, live like you have one, and don't panic.

    Serology. These are inexpensive and can give some leads, but surely you have received these if they'we even checked EBV & CMV antigens.
    - LDH Lactate dehydrogenase is sometimes elevated
    - ESR Erythrocyte sedimentation rate, also
    - Hypergammaglobulinemia isn't rare (elevated IgA, IgC, IgG, IgM or IgE)
    - WBC white blood count, especially percentages, could tell something
    -> high % of eosinophils is called eosinophilia, and might occur on some cases

    PS: what is ENT?
    Dx 07/2010 AITL (AILD / AIL / AILT whatever) stage 3B, age 31 at the time. Got 6 cycles CHOP14 plus 4 cycles Alemtutzumabi (clin.trial) & AutoSCT 11/2010. Relapse @ 11/2011. Skipped the suggested IKE / ICE + AlloSCT 2/2012. Intead doing alt approach since 1/2012: Supplements & Living foods.

  5. #5
    Administrator Top User Didee's Avatar
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    ENT Ear, Nose and Throat Specialist.
    Fine needle biopsies are very accurate for Thyroid diagnosis' but not reliable at all for Lymphoma.
    My bloods were all good in the months leading up to diagnosis.
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

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  6. #6
    Administrator Top User ChemoMan's Avatar
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    Hi all

    I would like to reiterate what Didee said, my bloods were also essentially normal and gave no indication that I had lymphoma.

    FNB's are useless for detecting lymphoma as they give far too many false negatives. Specialists have been trying to educate general practioners about this but I continue to be surprised at how many people come here afte FNBs. A negative result from an FNB is virtually useless to you. You did mention in your post that they took out a bunch of nodes so i am a bit confused about your biopsy. If this is true and they took out 3 or 4 nodes for examination then you need spend no more time here

    Good luck

    The best medical specialist to see about lymphoma is a hematologist, blood is the area of their expertise.
    Age 57
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  7. #7
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    Quote Originally Posted by veggiegirl View Post
    open biopsy for the cervical node... they removed not one but 3 lumps
    That sounds like surgical biopsy of three nodes, do you have the results of them?

    That's true about FNA, avoid them if lymphoma is the primary suspect. They could be even dangerous (spreading cancer cells in needle tract, false positives).

    Thanks for the ENT info. Do we have abbreviation collection somewhere FNA/FNB etc

    Needle aspiration biopsy (NAB)
    fine needle aspiration cytology (FNAC)
    fine needle aspiration biopsy (FNAB)
    fine needle aspiration (FNA)
    large-core needle biopsy
    Dx 07/2010 AITL (AILD / AIL / AILT whatever) stage 3B, age 31 at the time. Got 6 cycles CHOP14 plus 4 cycles Alemtutzumabi (clin.trial) & AutoSCT 11/2010. Relapse @ 11/2011. Skipped the suggested IKE / ICE + AlloSCT 2/2012. Intead doing alt approach since 1/2012: Supplements & Living foods.

 
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