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Thread: Do I have lymphoma?

  1. #1
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    Do I have lymphoma?

    I noticed some swollen nodes in my neck a few months back but was not experiencing any other symptoms, so I didnt do anything about it. A few weeks ago I decided to get it checked out and the doctor put me on some antibiotics because he thought it may be an infection, however, they did not work. I recently a CT scan that revealed lymph nodes in my neck and chest that were swollen. Right away the doctor mentioned Lymphoma which was quite unnerving. I also thought it was a bit unprofessional to mention something of that caliber without having test results to back it up.

    I had an excisional biopsy done last week to remove one of the nodes in my neck as it was very close to the surface. The doctor said I would be notified of the results by Friday, but when I called, they were still performing tests using "special staining" (whatever that means).

    Since it is taking so long I am starting to get worried. The only thing that is helping is that I have not experienced any symptoms of lymphoma whatsoever. I feel completely fine. I am 26 years old, eat well, exercise, and get proper sleep. I have no fatigue, no night sweats, no weight loss, no chest pain or coughing. The only thing is the swollen lymph nodes.

    Has anyone gone through this before? Its all a bit scary to me.

    Thanks!
    Chris
    Last edited by jonescm12; 01-28-2014 at 07:42 PM.

  2. #2
    Senior User David52's Avatar
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    Chris:

    Not much to say here until you get your biopsy results back. But you have done the right stuff in terms of running to ground whatever you have going on. Unfortunately, waiting for test results, scan results, biopsy results, etc. is the worst part. Hopefully, you will get your biopsy results back shortly and they will be negative for lymphoma. If it turns out positive for some kind of lymphoma, you have everything in the world in your favor, including the fact that you are very young, apparently fit and otherwise healthy, and so far symptom free. So try not to panic.

    In the meantime, we will all be praying and sending good karma in your direction in hopes that biopsy results are negative. Let us know, if you will, how it turns out, and know that this is a very knowledgeable and caring community that will be here to support you every step of the way if you need us.

    Best of luck,

    David
    62 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
    Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. No evidence of lymphoma, but funky spot between cervical vertebrae c-2 and c-3, which, after 2 MRI's, seem to be degenerative disc disease, not cancer.

  3. #3
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    Quote Originally Posted by jonescm12 View Post
    I noticed some swollen nodes in my neck a few months back but was not experiencing any other symptoms, so I didnt do anything about it. A few weeks ago I decided to get it checked out and the doctor put me on some antibiotics because he thought it may be an infection, however, they did not work. I recently a CT scan that revealed lymph nodes in my neck and chest that were swollen. Right away the doctor mentioned Lymphoma which was quite unnerving. I also thought it was a bit unprofessional to mention something of that caliber without having test results to back it up.

    I had an excisional biopsy done last week to remove one of the nodes in my neck as it was very close to the surface. The doctor said I would be notified of the results by Friday, but when I called, they were still performing tests using "special staining" (whatever that means).

    Since it is taking so long I am starting to get worried. The only thing that is helping is that I have not experienced any symptoms of lymphoma whatsoever. I feel completely fine. I am 26 years old, eat well, exercise, and get proper sleep. I have no fatigue, no night sweats, no weight loss, no chest pain or coughing. The only thing is the swollen lymph nodes.

    Has anyone gone through this before? Its all a bit scary to me.

    Thanks!
    Chris
    My husband went to the doctor for stomach pains. Blood work was done which showed a slightly high WBC count (10 being the high end of normal, and his was 13) Upon doing at CT scan, several enlarged abdominal lymph nodes were seen. The largest lymph node was 2.2 cm by 3.3 cm. The doctor also put him on antibiotics which did nothing to help the lymph nodes. He had a full colonoscopy, and it was written in his chart that they were looking for cancer in the colon that metastasized from his lymphoma. No cancer was found, only severe diverticulosis. 2 months later, he was told to see an oncologist and he was labeled as having lymphoma. We were told by 2 doctors that lymph nodes do not get that large from an infection, that the pain he was feeling in his abdomen was not from the diverticulosis, but from the lymph nodes, and they really gave us no hope that this was anything other than lymphoma. A needle biopsy was done and that came back as inconclusive, and he was finally sent for a PET scan. The PET scan was NEGATIVE and it showed the lymph nodes had finally shrunk down a bit, and the oncologist finally said it must have been an infection. Until that PET scan came back as negative for lymphoma, though, we were told it was lymphoma. I couldn't quite believe a doctor could label a patient as having lymphoma when there was nothing to back it up. I am guessing that if patients are labeled as having lymphoma, maybe it is easier to get the tests done to determine if they really do have it? I don't know if that's true, or not, just a thought.

    The waiting is the hardest part and it took us 4 months of worrying, thinking about it, and tests to get the all clear. But it finally happened. We are definitely very lucky.

  4. #4
    Super Moderator Top User po18guy's Avatar
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    To know that they are spending a little more time on your biopsy is actually good, although it doesn't feel so. Lymphoma can be quite difficult to identify correctly, and if that it what it is, you want to be certain that they have the correct diagnosis. The first path lab took a couple of weeks on mine, and completely missed the cancer. Yet, I had huge nodes popping out of my neck - something on the order of Frankenstein's electrodes, as well as all of the classic B symptoms. You may very well have had a viral or fungal infection - neither of which will be touched by antibiotics. There could also be a difficult to identify chronic infection. Many things. Yes, the wait is the worst, but we are hoping that all is benign.
    Dx 07/2008 Peripheral T-Cell Lymphoma - NOS, stage 4B. "Innumerable" (50+) 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 at first post-chemo scan.
    Scheduled for palliative care.
    Entered clinical trial of Romidepsin (Istodax) 03/2009. CR, remained NED for 56 (28 day) cycles.
    07/13 Possible relapse/autoimmune condition.
    08/2013 "re-induction" therapy of Romidepsin.
    Mixed results on 11/01/2013 scans.
    Treatment stopped 03/03/2014 - lack of response.
    02/10/14 five core needle biopsy samples indicate 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 nodes and spleen reduced 60% on their own.
    Currently a medical enigma.

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

 
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