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Thread: Just did the first ultrasound, a little bit of anxiety

  1. #11
    More Update

    The hospital called today, said that the radiologists looked at the ultrasound images and would not recommend a FNA because the lymph nodes looked benign depsite them tripling in size in 2 months. they said 2.5cm*0.5cm*0.2cm could be the normal size.

    Yesterday, I just heard a girl from my high school who is now in her sophomore year in University of California Berkeley has been diagnosed with T cell lymphoma. She is not even 20 years old! As a result, I became more worried. I dont know if I should push for the FNA though the radiology department does not recommend it. Also I told the girl about the forum and lymphomas.org.uk where she can find a lot of help!

  2. #12
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013
    What I would do, contact your physician and ask for his/her opinion. My guess is, the may do a watch and weight over the next couple of months. While radiologists are not pathologists, they have seen enough to at least have some knowledge on when or when not to be concerned. However, I would follow up with your physician, the person that oversees your care and get their take on the situation and recommendation.

  3. #13
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Never mind lymphoma. Any and all cancers are distinctly rare at 19. Do you have an ear/nose/throat (ENT) doctor?
    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.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    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.

  4. #14
    Newbie New User
    Join Date
    Apr 2018
    Kinda in the same boat as you as I am having a biopsy Friday. I would demand a biopsy. I’ve done a ton of research lately and Hodgkins (not non Hodgkins) is quite coming around your age group. Still I wouldn’t worry but I definitely would get a second opinion.. possibly get appt at general surgeon and demand biopsy. 2 cm and still growing is a cause for concern.

  5. #15
    Hi Everyone

    It has been 5 months and a lot has happened. I didn't do the FNA biopsy but instead did a MRI of head, neck and nasal cavity which found out that there is some kind of chronic inflammation in my nose which could be why I am having the lymph nodes. The latest ultrasound showed 2cm*1cm lymph nodes bilaterally in my neck which the doctors are still not worried about.

    I developed pityriasis rosea a week ago and everything else is so dar so good. No B-symptoms and the lymph nodes I felt 7 months ago is still there and I didn't feel any significant enlargement. I have now learned to ignore small changes in my body and not linking every single thing to the worst outcome.

    Hopefully everything stays this way, enjoying life everyday!

  6. #16
    Moderator Top User
    Join Date
    Mar 2010
    well done you and get back to living life, its so much more fun
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits

    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  7. #17
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Good news. I would hope that you and doctor are dealing with the inflammation.

  8. #18
    Hi, everyone

    Another 6 months have passed. I've completely forgot about my worries and have been happily living my life. However, recently I thought I finally found out the cause of my enlarged lymph nodes by accident.
    I went to my GP last week because of some chest pressure and hands/feet joint pains, she did EKG and draw a lot of blood. Everything is fine except for that I'm low on vitamin D and my Rheumatoid Factor was HIGH.
    I am now scheduled to see a rheumatologist next Monday. I'm pretty sure that I have RA and my lymph node problems were related to that. My mother had arthritis but I never thought I'd have RA at such a young age. I'm kind of leaning towards not to take medications for it and just leave it there as long as it doesn't bother me too much. But we'll see what the doc say at next week's appointment.

  9. #19
    Newbie New User
    Join Date
    Jul 2019
    Can you let us know how this turned out? I have a very similar situation that I am dealing with currently.

  10. #20
    Hi riley!

    Hope you are doing fine! I'm doing fine. Vitamin D 2000iu a day and a gluten-free diet solved my pain syndromes, don't know how that really functioned but the joint pain kicks in every time I ate pasta / piazza / bread / anything that has gluten or when I forgot my vitamin D. The joint pain acts as a reminder that I need to take my meds now haha

    As for lymphoma, I don't worry about that too much now. It has been almost two years since I first noticed symptoms. After my last post, I had my 21th birthday (), got a recurred pityriasis rosea but that resolved by itself after 3 months.

    I realized long time ago that lymph nodes are just hard and large for some people. Maybe I had a inflammation years ago and the lymph nodes just had always remained large after then. Ultrasound cound be a good first step action, normally doctors can tell if you need further investigation. I would advise you to go to the doctors and if they tell you you are fine, you are mostly fine!!!


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