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Thread: Can I get some insight?

  1. #1
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    Can I get some insight?

    Hi, what's up? Don't mean to bother ya'll just could use some insight from those who have or have not been diagnosed.

    I have a lymph node in an odd spot, it's just above my adams apple, slightly off to the right side of the midline, near the hyoid bone. First off, I didn't even know there was lymph nodes there. Anyway I have gotten an ultrasound, simple blood work, and a ct scan on it. CT scan showed two lymph nodes one a lower in my neck (doc couldnt feel it) and the bigger one being just over 1cm. It has been present for 4 months and hasn't gotten any bigger. I'm not sure what people mean by when they say they can move it, but if I put my thumb over it I seem to be able to press it slightly in different directions, but not far. It's not tender unless i poke at it a lot and it's not soft, but not rock hard either, almost rubbery feeling. Doc said CT scan showed no mass and didn't look as if it was attached to anything, which is good, but the concern is it's been two months since then and it's still there. Hasn't grown at all, but hasn't shrunk any either.

    I am going for full blood work at my primary doctor and to get a second opinion. My question is with lymphoma he said this is an odd spot, more typical spots are near collar bone and behind ears, also if it was cancer would it have grown in the four months? Any ideas what else it could be from or what that designated area of lymph nodes fights?

    As far as b symptoms go

    I haven't ran a fever at all
    I've gotten light night sweats, like part of my shirt was wet, but it's pretty hot here too.
    I have been a bit short of breath and fatigued.

    I'm 23 years old, just looking for some insight regarding the size of my node and how much it should have grown or why it may not have went down. I know you guys aren't doctors, but have been down this road and any advice helps.

    God bless ya

  2. #2
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    The comment that it is in an "odd spot" is incorrect. You can present with a swollen node in places all over your neck, and the neck is certainly one of the most common locations. My "main" one was on the side of my neck, kind of in the front. My "second" one was tiny and just left of my adam's apple. Yes, there can be swollen nodes in the collarbone area, under the arms, in the abdomen, and in the groin. I had a swollen node on the side of my neck for 5 years and it never changed. Turned out to be indolent follicular lymphoma. All that stuff about pressing on it, if it moves, how soft or hard it is, etc. is also meaningless. The ONLY way to know if a swollen node is lymphoma is to have it biopsied, and preferably fully removed. Needle biopsies can be inconclusive.

    Regarding would it grow in 4 months, that completely depends. There are over 60 subtypes of lymphoma - some aggressive, some indolent. As I mentioned, mine was on my neck for over 5 years, and never noticeably changed. I had no other palpable nodes anywhere. Lymphoma is funny stuff, but I can tell you that at almost every time, what you think could be lymphoma is not. Kermica and the other moderators on the board here can give you the statistics, but it is well over 95%.

    For peace of mind, I would recommend you get an appointment with a hematologist/oncologist, and have the node biopsied. If not, keep observing it over time and see if it goes back down. Usually you are dealing with a node that is swollen for whatever reason - recent cold or infection, dental issues, etc.

    David
    David
    Age 43
    March 1, 2011 - Grade 1 Follicular Lymphoma from node removed from neck.
    2/22 PET/CT scan revealed one additional node in groin - also removed.
    Officially Grade 1 / Stage 3 due to second node.
    No Other Evidence of Disease.
    7/8 PET/CT shows two new small nodes - opposite sides, neck and groin.
    1/06/12 Completed Rituxan x 4 Monotherapy. Easiest thing I ever did.
    2/29/12 NED! Completed 4 additional maintenance doses of Rituxan. 12/12 NED!

  3. #3
    Administrator Top User Kermica's Avatar
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    Hi Astonish and welcome. David is correct in stating that lymphoma is probably not the root cause of your swollen node. This link to the Mayo Clinic will spell that out for you: http://www.mayoclinic.com/health/swo...SECTION=causes

    He is also correct that the only way to rule lymphoma in or out is through a full excisional biopsy of the affected node. You are doing the right things by staying the course and insisting that the docs follow the symptoms all the way to the rroot cause. It is probably not lymphoma but, if it turns out to be, we will be here to support you in your journey. Good luck.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 63
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites
    Remission confirmed July 09

    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.

    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.

    Significant progression detected in PET scan - December 2012

    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.

    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.

    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".

    February 2013 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.

    Very grateful and will await the next chapter with confidence...may it never come.

    Remember the Rules!

  4. #4
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    Quote Originally Posted by Kermica View Post
    Hi Astonish and welcome. David is correct in stating that lymphoma is probably not the root cause of your swollen node. This link to the Mayo Clinic will spell that out for you: http://www.mayoclinic.com/health/swo...SECTION=causes

    He is also correct that the only way to rule lymphoma in or out is through a full excisional biopsy of the affected node. You are doing the right things by staying the course and insisting that the docs follow the symptoms all the way to the rroot cause. It is probably not lymphoma but, if it turns out to be, we will be here to support you in your journey. Good luck.

    Good health,

    kermica
    Thanks, I'm gonna go for blood work this week and follow up with my primary doc and see what he thinks. Just wondering why it hasn't gone down.

    Two quick questions about biopsies.

    1- Does the node have to be a certain size in order to do it? Could they do it with mine at 1.1 cm?

    2- I heard needle biopsy is not the way to go, but my mother has an adverse reaction to anesthesia where she almost died because they couldn't wake her up out of it or something (dont remember I was a kid) but is there a large needle biopsy you can do with just numbing it that would be accurate?

  5. #5
    Administrator Top User Kermica's Avatar
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    Good, continue to press until your concerns have been addressed. 1.1 cm is large enough to biopsy if needed and no, fine needle biopsies should not be done to diagnose lymphoma. Full excisional biopsy recovers the material in a form best suited to accurate diagnosis whereas FNA has the potential to cause sample damage or to produce an inadequate sample for definitive diagnosis. If you get to the point of needing a biopsy, be sure to tell the surgeon about your Mom's incident. If she is still living, ask her for more details, as well.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 63
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites
    Remission confirmed July 09

    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.

    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.

    Significant progression detected in PET scan - December 2012

    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.

    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.

    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".

    February 2013 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.

    Very grateful and will await the next chapter with confidence...may it never come.

    Remember the Rules!

  6. #6
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    Quote Originally Posted by Kermica View Post
    Good, continue to press until your concerns have been addressed. 1.1 cm is large enough to biopsy if needed and no, fine needle biopsies should not be done to diagnose lymphoma. Full excisional biopsy recovers the material in a form best suited to accurate diagnosis whereas FNA has the potential to cause sample damage or to produce an inadequate sample for definitive diagnosis. If you get to the point of needing a biopsy, be sure to tell the surgeon about your Mom's incident. If she is still living, ask her for more details, as well.

    Good health,

    kermica
    Thanks for the advice.

    Also Davidgb, what was the size of your node that was present for 5 years?

  7. #7
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    Quote Originally Posted by Astonish View Post
    Thanks for the advice.

    Also Davidgb, what was the size of your node that was present for 5 years?
    My five-year node was 1.7 I think on the long side. The one I didn't know about, which was in my right groin/leg, was actually a little larger, at 2.1 on the long side. It was narrow though - .7 or so I think wide. Weird.

    You can't go by that stuff though man. Everybody's case is SO different. When these two nodes of mine were removed, the two new ones that came up were funny too. The one in my neck was 8mm x 10mm, but it's uptake value on the PET scan was 4.6. The new one that came up in my left leg/groin was 1.5 x 1.7 but with an uptake value of only 2.5. Then after 6 months, the one in my neck dropped down to 4.5 (same size), and the one in my left increase in value to 3.6 (but stayed the same size). See how goofy it is?

    Also, regarding blood work. I have always had PERFECT blood work—every single part of it, even the less tested beta-2 microglobulin. Good blood work is certainly NOT an indicator that you have no lymphoma. However, certain high levels (like LDH or Beta-2) ARE indicators that something could be going on. In other words, normal labs don't mean you're ok.

    Again, follow Kermica's advise here. The only way to know is by full excisional biopsy of the node. 1.1 is certainly an ok size to have that done and tested. If your nodes are not changing, and there are no other symptoms, odds are you are FINE. But there is only one way to know for sure.

    David
    David
    Age 43
    March 1, 2011 - Grade 1 Follicular Lymphoma from node removed from neck.
    2/22 PET/CT scan revealed one additional node in groin - also removed.
    Officially Grade 1 / Stage 3 due to second node.
    No Other Evidence of Disease.
    7/8 PET/CT shows two new small nodes - opposite sides, neck and groin.
    1/06/12 Completed Rituxan x 4 Monotherapy. Easiest thing I ever did.
    2/29/12 NED! Completed 4 additional maintenance doses of Rituxan. 12/12 NED!

  8. #8
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    Quote Originally Posted by davidgb View Post
    My five-year node was 1.7 I think on the long side. The one I didn't know about, which was in my right groin/leg, was actually a little larger, at 2.1 on the long side. It was narrow though - .7 or so I think wide. Weird.

    You can't go by that stuff though man. Everybody's case is SO different. When these two nodes of mine were removed, the two new ones that came up were funny too. The one in my neck was 8mm x 10mm, but it's uptake value on the PET scan was 4.6. The new one that came up in my left leg/groin was 1.5 x 1.7 but with an uptake value of only 2.5. Then after 6 months, the one in my neck dropped down to 4.5 (same size), and the one in my left increase in value to 3.6 (but stayed the same size). See how goofy it is?

    Also, regarding blood work. I have always had PERFECT blood work—every single part of it, even the less tested beta-2 microglobulin. Good blood work is certainly NOT an indicator that you have no lymphoma. However, certain high levels (like LDH or Beta-2) ARE indicators that something could be going on. In other words, normal labs don't mean you're ok.

    Again, follow Kermica's advise here. The only way to know is by full excisional biopsy of the node. 1.1 is certainly an ok size to have that done and tested. If your nodes are not changing, and there are no other symptoms, odds are you are FINE. But there is only one way to know for sure.

    David
    Yea the blood work is just to see if anything else could be causing it, I understand that it's no indicator of whether or not it's lymphoma, but trying to find other underlying issues prior to the biopsy.

    Thanks for the quick response.

  9. #9
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    What you are experiencing can also be caused by a variety of different viruses, including mononucleosis - although that normally comes with fevers. Lymph nodes can react to a virus, fungus or bacteria. The vast majority of causes of reactive nodes are not cancer. If you have an extensive family history of cancer, or if a sibling has been diagnosed, I might be a little more concerned. The Epstein-Barr virus (95% infection rate among adults) is associated with fatigue and other symptoms. As far as night sweats go, you would know it, as you would be soaked from head to toe. No weight loss? Probably a good sign. But the blood work and other tests will likely give your answer. Bottom line: wait for blood results.
    Dx 07/2008 Peripheral T-Cell Lymphoma - Not Otherwise Specified.
    Stage 4B, widespread disease, "innumerable" tumors above/below diaphragm + Bone Marrow Involvement.
    Primary regimen 4 cycles CHOP+Etoposide plus 4 cycles of Gemcitabine, Navelbine and Doxil.
    NED at completion of chemo 12/2008.
    Relapse 02/2009.
    Scheduled for salvage therapy of ICE and hospice.
    Clinical trial of Romidepsin 03/2009. CR, remained NED for 56 (28 day) cycles.
    Relapse 07/2013.
    08/2013 "re-induction" therapy of 3 Romidepsin infusions per 28 day cycle.
    Mixed results on 11-01-2013 scans.
    Treatment stopped 03-03-2014 due to progression and spleen involvement.
    02/2014 Core needle biopsy shows cancer has mutated into AngioImmunoblastic T-Cell Lymphoma.
    Additional biopsy scheduled 03/04/2014 to confirm mutation.

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

  10. #10
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    Quote Originally Posted by po18guy View Post
    What you are experiencing can also be caused by a variety of different viruses, including mononucleosis - although that normally comes with fevers. Lymph nodes can react to a virus, fungus or bacteria. The vast majority of causes of reactive nodes are not cancer. If you have an extensive family history of cancer, or if a sibling has been diagnosed, I might be a little more concerned. The Epstein-Barr virus (95% infection rate among adults) is associated with fatigue and other symptoms. As far as night sweats go, you would know it, as you would be soaked from head to toe. No weight loss? Probably a good sign. But the blood work and other tests will likely give your answer. Bottom line: wait for blood results.
    No weight loss thus far, nothing out of the norm anyway. I got a blood sample taken when I was in the ER, but not sure it was a full count, probably just something basic. I'm going to get a full count either tomorrow or Monday to try to get a better idea of what's causing the node to not go down.

    Thanks for the advice. Also I heard EBV is something you have to get tested specifically for, would that not show up on a full blood count?

  11. #11
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    Quote Originally Posted by Astonish View Post
    Also I heard EBV is something you have to get tested specifically for, would that not show up on a full blood count?
    I believe EBV has to be specifically looked for.
    Dx 07/2008 Peripheral T-Cell Lymphoma - Not Otherwise Specified.
    Stage 4B, widespread disease, "innumerable" tumors above/below diaphragm + Bone Marrow Involvement.
    Primary regimen 4 cycles CHOP+Etoposide plus 4 cycles of Gemcitabine, Navelbine and Doxil.
    NED at completion of chemo 12/2008.
    Relapse 02/2009.
    Scheduled for salvage therapy of ICE and hospice.
    Clinical trial of Romidepsin 03/2009. CR, remained NED for 56 (28 day) cycles.
    Relapse 07/2013.
    08/2013 "re-induction" therapy of 3 Romidepsin infusions per 28 day cycle.
    Mixed results on 11-01-2013 scans.
    Treatment stopped 03-03-2014 due to progression and spleen involvement.
    02/2014 Core needle biopsy shows cancer has mutated into AngioImmunoblastic T-Cell Lymphoma.
    Additional biopsy scheduled 03/04/2014 to confirm mutation.

    "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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