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Thread: Lymph Nodes - Not sure if I should wait

  1. #1
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    Lymph Nodes - Not sure if I should wait

    Hello All,

    (I did read the sticky on swollen lymph nodes)

    So I have had swollen lymph nodes in my neck (4, biggest is ~2cm) for about 2 months. They are painless and didn't show up while I was noticeably sick. No other real symptoms.

    My PCP referred me to an ultrasound in which they looked somewhat suspicious. I can copy the exact results.

    I saw an ENT who put a scope down my throat and said all looked good. I went to John Hopkins and had a FNA (4 passes) and core biopsy (3 samples collected) done on the biggest and everything came back completely clear. Flow cytometry and other tests all "benign" with indicators of reactive lymph node. I followed up with my ENT the other day and she pretty much asked if mentally I could handle waiting 3 months before thinking about a full excisional biopsy. I said yes, and I hope that was the right choice. I don't want surgery just because I'm anxious. I also have a few other weird symptoms that I didn't think to bring up.

    I have an itchy scaly rash on my ankle and a few smaller patches on both feet. This has popped up before in the same place about 10 years ago and the dermatologist thought it was something like eczema but wasn't sure. It cleared up with steroids and reappears every few years. Stupid Google has me a little freaked out that it's "Mycosis fungoides".

    I also have soft bumps (~1cm) just under the skin all over my stomach and a few above my ribs. Maybe ~8 total. I haven't kept track but some of them have been there for decades. I've always assumed thy were lipomas or cysts.


    I feel like I'm inventing more symptoms to match the narrative of lymphoma. I also thought I had fatigue and dry mouth, but they went away after I calmed down a bit about all of this, so I'm very willing to admit that I'm overworrying and it's making things worse. Any thoughts or advice would be appreciated.

  2. #2
    Moderator Senior User IndyLou's Avatar
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    It seems as though all the signs so far are pointing toward "active lymph nodes," which you admit to being aware of. You haven't given any background demographics such as whether you're male or female, but all indications seem to suggest this isn't anything to be overly concerned about. You're working with your PCP and ENT...trust them, and try not to use Google to fill in the blanks. Try to be patient, and see how things progress over the next few months.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED

  3. #3
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    I am a 33 year old male.

    And yes, Google is the worst and can "prove" anything.

    Thank you for taking the time to respond!

  4. #4
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear of your worries. First, I am wondering why do you not trust the doctors. They are not only very well trained, but also experienced. They have both a desire and duty to ferret out any disease process, and are very well aware of the legal ramifications of malpractice.

    Second, why do you not trust the diagnostic tests? They have been done at a world-class facility and specifically search for evidence of a malignancy. None was found. Yet your mind is racing, driving you on to suspect something.

    One thing I can advise against is to lump every symptom you've had for several years together and assume that it is likely some form of cancer. Over 68,000 diseases are known to medical science, but produce only 150 or so symptoms. By the math, that is 450+ potential conditions per symptom. You have listed several symptoms.

    We are in the most anxious culture in human history. 1 in 5 (64 million in the US) suffer from anxiety. You are in the age bracket that is consistent with a high level of anxiety. Please ask those closest to you if they think you are an anxious person. Talk to doctor about it. It is 100% treatable without drugs and can help restore your peace of mind.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  5. #5
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    I trust my doctors and that my biopsy was run at the highest level of skill, but it's really hard to find information on how accurate FNA / core biopsies are. I would feel so much better if I just had a ballpark idea of how concerned / relieved I should be. Like my PCP gave me a VERY VERY tentative 10% chance of malignancy based on ultrasound... after the good biopsy am I down to 1% or does this test have a high rate of false negatives. My lymph nodes have been swollen for 2 months, and I'm going to wait another 3 before we consider a excisional biopsy. At that point should I be very worried or is it still just a test that will most likely come back benign based on the core biopsy and the full biopsy is just a precaution.

    po18guy - Thanks for your words of advice. I am operating under the assumption that my problem is health anxiety (other than whatever the heck is causing these lymph nodes to swell) since that is something I can do something about. I've upped my exercise, and posting this here helped. This has replaced all of my googling since I can have on personalize thread instead of combing through hundreds of pages.

  6. #6
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by ghi5000 View Post
    I trust my doctors and that my biopsy was run at the highest level of skill, but it's really hard to find information on how accurate FNA / core biopsies are. I would feel so much better if I just had a ballpark idea of how concerned / relieved I should be. Like my PCP gave me a VERY VERY tentative 10% chance of malignancy based on ultrasound... after the good biopsy am I down to 1% or does this test have a high rate of false negatives. My lymph nodes have been swollen for 2 months, and I'm going to wait another 3 before we consider a excisional biopsy. At that point should I be very worried or is it still just a test that will most likely come back benign based on the core biopsy and the full biopsy is just a precaution.

    po18guy - Thanks for your words of advice. I am operating under the assumption that my problem is health anxiety (other than whatever the heck is causing these lymph nodes to swell) since that is something I can do something about. I've upped my exercise, and posting this here helped. This has replaced all of my googling since I can have on personalize thread instead of combing through hundreds of pages.
    You are welcome. Re-read your post. Anxiety is still driving you. I would deal with that first, as it is not helping you now and will not help you in the future.

    Even if it is lymphoma, it is a very slow growing variety. In two months, I went from zero to "innumerable" actual tumors (50+). Even if it is lymphoma, the most often chosen tactic if the nodes are not actively growing and multiplying is: watch and wait. This is exactly what doctor is doing.

    Remember: You do not have cancer until a pathology report states that you have cancer.

  7. #7
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    Quote Originally Posted by po18guy View Post

    Even if it is lymphoma, it is a very slow growing variety. In two months, I went from zero to "innumerable" actual tumors (50+). Even if it is lymphoma, the most often chosen tactic if the nodes are not actively growing and multiplying is: watch and wait. This is exactly what doctor is doing.
    That's what drives me crazy, would I know if they were growing and multiplying? I spend a lot of time checking... The ones on my neck are palpable and visible if I stretch a certain way. I've discovered at least 20 other nodes in my neck, armpit and groin but I think they are all small... pea sized. I definitely can't see them and none are the size of the ones I originally found. Now that I know where they are they are very distinctive, which in my head means they are growing but more likely I am just familiar with them.

    The main reason I'm posting is to update. Late in May I had mononucleosis. It is a nasty bug and was not fun, but apparently it has a very long incubation time. Now my nodes were swollen 11 weeks before I had mono, where the typical incubation time is ~4-8 weeks but my PCP thought that it could explain all of my swollen nodes. She told me to ask my ENT, who thought "normally they don't swell up until symptoms start but she guesses it could happen". Right now this seems like the most likely explanation... it seems an impossible coincidence that I would just randomly get mono while having an unrelated lymph node scare.

 

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