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Thread: Submandibular small lumps each side

  1. #1
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    Submandibular small lumps each side

    Male 27
    189 lbs
    US
    6'

    Mid April started to have weird "thing in throat" feeling.
    Went to walk in clinic end of April, negative for strep and bacterial.
    Early May noticed one white spot on tonsil. Felt chills all day. No fever. Lower jaw would feel shooting numbness for 10 minutes every couple days.
    Started having mild night sweats for two weeks. Stomach started hurting.


    Went to primary care,
    Complete blood count was very normal.
    Doctor gave Prednisone.
    Bilateral submandibular glands sightly swollen, slightly spongey bumps but moveable.
    She was concerned about it.
    Swelling did not change.
    Started getting all day dull headache.


    Went to ENT
    Throat optically inspected with camera
    No signs of malignancy
    Esophagus slightly irritated, prescribed stomach acid medicine. White tonsil spot cited as debris.
    Asked to come back in 3 months or to call if anything changes.
    I called back a week later and I asked for a CT or biopsy.

    Appointment is for June 17th but I'm scared it's just another doctor looking at it and not what I requested. I'm calling every couple days to see if anything earlier opened.
    Since then night sweats and chills have stopped.
    Watching weight, I'm now 188 lbs when I was 198 lbs two weeks ago.
    Stomach always feels off, dull headache and obviously my glands feel tender in my face.
    No other glands are active on my body or neck.

    So at this point my mind is screaming cancer but it seems like that's more common in the salivary gland near the ear. I'm also barely on my cell phone (I know, dumb assumption but I'm looking for any reason how I may have a rare cancer).

    Should I be booking a closer appointment elsewhere? This weight loss is worrying me.

  2. #2
    Moderator Top User
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    Hi, sorry to see you are concerned about your health and feel the need to post, my advice would be have faith in your doctors and let them do what they trained to do, diagnose disease and reassure patients when the is no reason for concern. Your doctors seem to be responding to your ailments and requests for further reassurance which will either rule things in or out. Worrying and causing yourself angst will only drive your thoughts about cancer and if not controlled will lead to anxiety issues, as we have seen this many times when people post about their worries.
    Hope the scan is fine and your worries are dispelled.
    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.

  3. #3
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    I appreciate your response. My worry is driven from wanting to take action and feeling like I've waited too long to bring it to the doctor's. My worry also comes from seeing very little of what I'm experiencing online which is bizarre to me. I am meditating and finding decently healthy ways to cope.

  4. #4
    Moderator Top User
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    When it comes to symptoms, nothing appears bizarre as in your case you have a range of issues, some may be link others not and some may be due to your heightened awareness as you seek answer. I know from my own experiences sometimes the are no answers even though the symptoms are real and happening.
    A second piece of advice is beware of Dr Google, the time to research is when you know what you are dealing with.
    Keep busy and your scan will be here before you know it, keep focusing on it and it will feel like a life time, its your choice
    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.

  5. #5
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by Rain790 View Post
    I appreciate your response. My worry is driven from wanting to take action and feeling like I've waited too long to bring it to the doctor's. My worry also comes from seeing very little of what I'm experiencing online which is bizarre to me. I am meditating and finding decently healthy ways to cope.
    At my second relapse, when I was at stage IV once again, I had to wait over a month and allow the cancer to grow so that a tumor would be accessible for biopsy. In my experience, lymphoma begins in one spot and not bilaterally. On one side, or in one area and spreads from there. No doctor, but I would opine that you may have tonsillitis. Just keep up with it, and know that some things are never diagnosed. If it is lymphoma - and I really, truly doubt it - it will make itself known in no uncertain terms.
    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.

  6. #6
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    Hello all. I open this thread every couple days and read it to feel a little more control. Thank you. I go to the ENT doc Monday and we will see what he says. I believe I'll ask for some kind of scan. Overall my white dot on tonsil is gone. My night sweats and chills have stopped. Headaches are gone as well. So right now all I have is an odd slight "numbness" on my neck but not to the point of not being able to feel. My little nodes on each side alternate between being slightly swole feeling. That's about it. I'm less nervous. I'll let things take their course with a scan and then deal. I feel silly for putting my family and friends through this on an unknown. I need to wait and see what happens. I don't know if this is salivary gland cancer. Either way when I find out, I'll post. I want to be helpful in some way for anyone else who may stumble on this post.

  7. #7
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    I'm new here but your post captured my attention because I have dealt with very similar symptoms so I thought I'd share my journey so far and where I am right now. I apologize in advance, it's a lengthy story!

    First I have to say I suffer with several autoimmune conditions (RA, Fibromyalgia, Raynaud's, Secondary Sjogrens to name a few) so I don't always give much attention to pain, even if it seems to be an unusual location, I live with pain 24/7, 365. But at the end of March of this year, one evening I noticed a pain in the left side of my neck, it was sort of weird, but I still chalked it up to sleeping on it wrong or something. But it didn't get better, the pain got worse and started radiating into my shoulder and collarbone and nothing, NOTHING, would make it feel better. Then I started getting swelling along my left jawline and it was tender, something was definitely wrong.

    Rheumatologist visit was on the books, she waved me off with "you're probably coming down with something" and that was it, but sent me to a primary care doctor. She said the same thing but sent me for an ultrasound, which showed several enlarged lymph nodes in my neck, likely reactive and "appeared" benign so they didn't recommend a needle biopsy. Thing was I hadn't been sick, so why reactive? How canyon tell just by looking at it whether it's benign? My mom died from breast cancer so my thought process is confirm, don't assume.

    Fast forward to appointment with cardiologist I'd waited months to see, she was concerned by the swelling and called the head of head and neck surgery for UCLA to see me. MRI of head was clear, was sent for CT scan of neck which showed the enlarged nodes at cervical level II and prompted urgent appointment with my head and neck doctor.

    I was told that I had lesions on my lingual tonsils (didn't even know there was such a thing) and that the tissue would need to be removed and sent out for pathology in addition to another ultrasound of my neck to do a needle aspirate of the enlarged lymph nodes. Clearly I'm a little concerned given the urgency in which this is being treated and of course the unknown. I'm hoping for the best but prepared for the other.

    Go with your gut, if you feel something is wrong then push for what you think should be done. Find another doctor if you need to, but don't just take what they tell you and walk away if you feel something is off. We as patients have to be our own advocates because no one else is going to do it for us, especially with this very broken system. I'm now three months into this whole process since it started and I've fought a lot, to be seen, to be heard, and I suggest you do the same if you're feeling something isn't right.

  8. #8
    Administrator Top User lisa1962's Avatar
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    Hello Ashes20:

    Sorry to hear of your health struggles. We are definitely our own best health advocates, however, with this said, at some point, especially after extensive testing, one must put some faith in the medical community after all, they spend years educating and training within the medical field. Sometimes, there are not clear reasons why someone is feeling "off" as there are literally hundreds of things that can mimic even just one symptom of cancer. Example, a cough does not equate to Lung Cancer, Lumps and bumps do not equate to Lymphoma.

    The OP of this thread has seen improvement with his symptoms. Cancer does not come and go but progresses. You are doing the right thing for yourself but keep in mind, you also have other medical factors that are known and your body is reacting. Not to say further investigation is not warranted, just saying jumping to cancer at this point, premature.

    If you would like to create your own thread Ashes20, please do so.

    Lisa

  9. #9
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    Thank you for your reply. I have been dealing with this for months and feel that I am finally in capable hands. To be clear, I am not the one jumping to cancer as the possible cause, it's been relayed to me as a possibility, thus the reason for the urgency with everything. It's unnerving to say the least so I thought coming here I could see if others had similar stories that resulted in that outcome. I guess I will just wait for my biopsy results and pathology after the surgery and go from there.

    I'm so happy that the original poster has seen improvement and truly hope that things turn out well for him. I think the unknown can be much more frightening that knowing what you're dealing with, at least for me.

    <3

  10. #10
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    I hope things are well for everyone. I went to a prinary ENT doc today. White spot on tonsil gone. He said neither submandibular were swollen. He stuck his finger under my tongue and only one submandibular side was tender. That's about it. I haven't felt anything off besides my lower jaw feeling weird still. Weird as in I feel the tenderness of my one gland on one side. Considering my symptoms went away then there isn't any reason to do anything. The doc did say he has a colleague who specializes in salivary gland "disorders" and if the gland swells or symptoms return, we can coordinate with him. Doc is just an email away. I feel better that there isn't swelling. Tenderness is okay. The lower jaw thing is weird but I'm feeling better. No swelling is big for me. I'll just watch it for some time. Give it around September and if it still feels off then perhaps I put out the signal. I really appreciate being listened to. Again I hope this helps someone in some way.

 

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