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.
Last edited by jonescm12; 01-28-2014 at 08:42 PM.
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,
65 yrs old
March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
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. All fine, save a bit of arthritis.
11/14/14: 24 month post transplant check-up--still NED. Scanziety still sucks.
5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
Relapse confirmed/ started every 3 week brentuximab
Allo transplant in Feb 2016.
100 day post transplant scans in June 2016 fine.
1 yr. post transplant blood work fine; clean scan. No GvHD so far.
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.
Originally Posted by jonescm12
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.
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.
07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, 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. Two dozen tumors + small intestine (Ileum) involvement.
04/22/15 TREC (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) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
07/16/15 Total Body Irradiation.
07/17/15 Haploidentical Allogeneic 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 Blood nose dive. Fever. Hospitalized two weeks.
08/04/15 Engraftment official - released from hospital.
08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
09/26/-11/03/15 Prednisone to control skin GvHD.
05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
09/16/16 Three skin punch biopsies.
11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.
I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.
"What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
- Hebrews 11:1