Talk to me about lymphoma- would you be worried? (pain, node, treatment)
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Has anyone here been diagnosed with lymphoma despite having normal blood work? My CBC came back normal. However I have an autoimmune disease that puts me at an increased risk of lymphoma. Furthermore, I have had an increase in sporadic lymph node swelling. Started with a lymph node under my chin (ultrasound said it appears to not be of significance because of the size- but still- it's there and only on one side). Then my salivary glands under one side of my tongue became swollen. ENT said it was the submandibular glands flaring due to my autoimmune disease. Okay. I didn't think much of it. Then most recently I noticed one of my tonsils is swollen, only on one side. Went to my PCP's office but he said it is "probably just trauma to the tonsil that caused it to swell." Hmmmm. Also, my pelvis has been hurting me. I thought I had a UTI at one point but urinalysis ruled that out. Docs can't explain the pelvic pain. I looked up lymph nodes in that area and I am having pain in that exact area where the lymph nodes are.
I am anemic. I have extreme fatigue, losing hair randomly (endocrinology work-up ruled out anything that could be causing it), I get extreme chills and then have hot flashes, am pretty much always cold, chest pain (also unexplained- docs keep telling me it is atypical and don't know why), back pain, lightheaded was (albeit this is a symptom of one of my other conditions so it could be due to that), and I do get occasional unexplained itching spells. I have a multitude of medical conditions and symptoms overlap with symptoms of lymphoma so I fear that's why docs are brushing these symptoms. However the more I think about things the more I am feeling it is likely lymphoma.
Would you be concerned it is lymphoma given the increased occurrence of lymph node swelling (in absence of an infection to cause this)? The increased occurrence of these lymph node issues has been in the past 7 months. I had a biopsy to confirm my autoimmune diagnosis and since the diagnosis my health has gotten worse. Is it possible I could have lymphoma with a normal CBC? (CBC did show differentials btw)... The CBC didn't show my anemia due to my iron supplementation. Additionally, my Epstein Barr virus titers came back extremely high. The high end of the range to confirm EBV titers is .90 but mine was 5.0. It was flagged as being extremely high. I learned that this is also what can put me at greater risk of lymphoma.
I did contact 2 hospitals today for a second opinion but they said they will only work with me once I receive a diagnosis. Well how the heck can I get one of my docs brush off my symptoms?! Frustrating. I sent my info to one of the doctors who said he will review my history and "may consider" taking me on as a patient for a consultation.
Last edited by sunshinelove0000; 05-12-2015 at 08:11 PM..
The only way to diagnose lymphoma is through an excisional biopsy of a cancerous lymph node. Have you had a chest xray or a CT scan?
Many lymph nodes are not palpable - I was misdiagnosed for over 5 years because most of my cancer was in lymph nodes in my chest and it wasn't until the end that I developed palpable nodes in my underarm and collar bone. My bloodwork was normal even on the day when I was diagnosed with stage IV Hodgkin's lymphoma with cancer from my collar bone all the way down to my groin, including my spine.
Lymphoma symptoms are nebulous, which is why I went without a diagnosis for so long (plus the fact that I was only 18 when my first symptoms developed). I can't tell you whether or not to be concerned because it seems like your existing health issues share some symptoms.
I can say that the lymph node swelling wouldn't be sporadic. While nodes with lymphoma can wax and wane, they don't go away.
The only way to diagnose lymphoma is through an excisional biopsy of a cancerous lymph node. Have you had a chest xray or a CT scan?
Many lymph nodes are not palpable - I was misdiagnosed for over 5 years because most of my cancer was in lymph nodes in my chest and it wasn't until the end that I developed palpable nodes in my underarm and collar bone. My bloodwork was normal even on the day when I was diagnosed with stage IV Hodgkin's lymphoma with cancer from my collar bone all the way down to my groin, including my spine.
Lymphoma symptoms are nebulous, which is why I went without a diagnosis for so long (plus the fact that I was only 18 when my first symptoms developed). I can't tell you whether or not to be concerned because it seems like your existing health issues share some symptoms.
I can say that the lymph node swelling wouldn't be sporadic. While nodes with lymphoma can wax and wane, they don't go away.
Wow that is mind blowing that you were so sick but docs had no idea. So amazing you're here to share your story though! Are you currently in remission? What was your treatment like?
I shouldn't have used the word sporadic that way... What I meant is that I am sporadically noticing *new* lymph nodes swelling, but that the ones that swell don't go down in size. (If that makes sense). I went from having no swelling to having symptoms. Got diagnosed with the autoimmune disease. A month later had chest pain. Never went away. Then back pain started. Fatigue has been constant the entire time. Then I got the lump under my chin. Then the swelling under my tongue. Then pelvic pain in groin area. Then most recently my one tonsil swollen... All of the nodes I mentioned are still swelling, but they didn't happen all at once...
I had a ct scan for chest pain. Came back normal. Chest x Rays have also been normal
My wife was as healthy as the proverbial horse for over sixty years. She had a sinus infection and was scheduled for surgery. The day before the surgery they examined her very carefully and she was cleared for the next day surgery. Expecting a six hour surgery I left the hospital but was called back in less than an hour. They had found cancerous lesions in her mouth and throat. The X-rays proved they were not there the day before. They took biopsies but didn't do the sinus surgery. She went from healthy to stage 4B the next week.
My wife was as healthy as the proverbial horse for over sixty years. She had a sinus infection and was scheduled for surgery. The day before the surgery they examined her very carefully and she was cleared for the next day surgery. Expecting a six hour surgery I left the hospital but was called back in less than an hour. They had found cancerous lesions in her mouth and throat. The X-rays proved they were not there the day before. They took biopsies but didn't do the sinus surgery. She went from healthy to stage 4B the next week.
Wow! Talk about your life being turned upside down in a matter of a few hours. How is she doing now? What treatment did she go through?
Wow that is mind blowing that you were so sick but docs had no idea. So amazing you're here to share your story though! Are you currently in remission? What was your treatment like?
I shouldn't have used the word sporadic that way... What I meant is that I am sporadically noticing *new* lymph nodes swelling, but that the ones that swell don't go down in size. (If that makes sense). I went from having no swelling to having symptoms. Got diagnosed with the autoimmune disease. A month later had chest pain. Never went away. Then back pain started. Fatigue has been constant the entire time. Then I got the lump under my chin. Then the swelling under my tongue. Then pelvic pain in groin area. Then most recently my one tonsil swollen... All of the nodes I mentioned are still swelling, but they didn't happen all at once...
I had a ct scan for chest pain. Came back normal. Chest x Rays have also been normal
I've been in remission for almost 4 years and had 6 months of chemo. I go back for yearly scans at this point.
Have you had any increased infections due to the autoimmune disorder? I have a swollen node under my chin and one of my tonsils is bigger than the other, but that's because my nodes are more likely to get "shoddy" post-chemo. It takes them a LOT longer to go down in size after illness and some never go down at all. Because I've gotten so many sore throats in the past few years, my tonsils are pitted and I get wicked tonsil stones in and around the tonsil that is larger - which also keeps it large and contributes to the swollen node under my chin. Even with my cancer history, it's not a concern.
Normal CTs and chest xrays mean that I wouldn't worry, but I had Hodgkin's lymphoma which has a very standard pattern of progression. I'd say it would be odd no matter what lymphoma to have node involvement in the neck AND in the abdomen but a clean chest CT and xray. Most do not seem to skip around the body - there's a progression.
Has anyone here been diagnosed with lymphoma despite having normal blood work? My CBC came back normal. However I have an autoimmune disease that puts me at an increased risk of lymphoma. Furthermore, I have had an increase in sporadic lymph node swelling. Started with a lymph node under my chin (ultrasound said it appears to not be of significance because of the size- but still- it's there and only on one side). Then my salivary glands under one side of my tongue became swollen. ENT said it was the submandibular glands flaring due to my autoimmune disease. Okay. I didn't think much of it. Then most recently I noticed one of my tonsils is swollen, only on one side. Went to my PCP's office but he said it is "probably just trauma to the tonsil that caused it to swell." Hmmmm. Also, my pelvis has been hurting me. I thought I had a UTI at one point but urinalysis ruled that out. Docs can't explain the pelvic pain. I looked up lymph nodes in that area and I am having pain in that exact area where the lymph nodes are.
I am anemic. I have extreme fatigue, losing hair randomly (endocrinology work-up ruled out anything that could be causing it), I get extreme chills and then have hot flashes, am pretty much always cold, chest pain (also unexplained- docs keep telling me it is atypical and don't know why), back pain, lightheaded was (albeit this is a symptom of one of my other conditions so it could be due to that), and I do get occasional unexplained itching spells. I have a multitude of medical conditions and symptoms overlap with symptoms of lymphoma so I fear that's why docs are brushing these symptoms. However the more I think about things the more I am feeling it is likely lymphoma.
Would you be concerned it is lymphoma given the increased occurrence of lymph node swelling (in absence of an infection to cause this)? The increased occurrence of these lymph node issues has been in the past 7 months. I had a biopsy to confirm my autoimmune diagnosis and since the diagnosis my health has gotten worse. Is it possible I could have lymphoma with a normal CBC? (CBC did show differentials btw)... The CBC didn't show my anemia due to my iron supplementation. Additionally, my Epstein Barr virus titers came back extremely high. The high end of the range to confirm EBV titers is .90 but mine was 5.0. It was flagged as being extremely high. I learned that this is also what can put me at greater risk of lymphoma.
I did contact 2 hospitals today for a second opinion but they said they will only work with me once I receive a diagnosis. Well how the heck can I get one of my docs brush off my symptoms?! Frustrating. I sent my info to one of the doctors who said he will review my history and "may consider" taking me on as a patient for a consultation.
Lots of information are missing. First of all, how old are you and are you done with menses? What kind of autoimmune disease? Celiac disease? My gut feeling is you have anxiety more than lymphoma. (I am not saying you don't have those symptoms. But those are more likely discrete processes.)
Hi. Are you still using this forum? If so, how are your symptoms doing?
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