Aa
Just to vent .... and see if a biopsy is warranted
So I've had right side submandibular lymph node swelling for the past seven months now. I've had a CBC, MRI, and CT Scan with contrast - all to tell me that I am "fine" and not to worry. Unfortunately I feel and notice this thing every day, and every appointment has confirmed it is indeed a "palpable lymph node". Over these past 7 months I've experienced labored swallowing, throat dryness, very mild hoarseness, mild night sweats (not since MAR), finding more petechie on my body (not an alarming amount), 7-8% weight loss, jaw pain on the same side, and a feeling like other lymph nodes in the area are reactive as well. Also, more recently I notice if I have a glass of wine or any alcohol the lymph node does not like it at all. It doesn't burn or hurt per say but it certainly becomes uncomfortable. Recently the area has started to itch, and the lymph node feels tight (if that makes sense). I do not feel a hard mass or immovable mass and whenever I do check it (and I do so very infrequently at this point) but touching it does make it feel more tender.
At this point I am going back to my GP to request another CBC. The report on the first was "normal" however there were some parts where I was on the way upper and lower ends of normal (Hb, Hct, Platelets, lymphocytes all low or way low end of normal). I had a CBC back in 2019 which was truly normal, and in which I was almost perfectly down the middle of normal (except for very very low end of "normal" platelets). So at this point I am wondering if I am out of bound on asking my GP for a referral for a fine needle biopsy? Every appointment I'm only seen for about 5 -15 minutes then sent on my way, so it really feels like they don't care or don't have a clue. If nothing else I am hoping at least for a referral to an ENT.
This is completely depressing to deal with - which everyone here knows. But I am trying to remember the positive. Plus there are positive indications as well - I am still very physically active (working out, riding, running 5 days a week), I feel generally okay/healthy, I sleep just find and most of the aforementioned symptoms have not returned lately. I had a close friend go through this with the same results - being told everything is okay, he doesn't need a FNB only to have his FNB come back and say stage 1 cancer! Thankfully he was treated and recovered. If he wouldn't have persisted he might have had a different out come. I can't help but feel like I am in the same situation.
At this point I am going back to my GP to request another CBC. The report on the first was "normal" however there were some parts where I was on the way upper and lower ends of normal (Hb, Hct, Platelets, lymphocytes all low or way low end of normal). I had a CBC back in 2019 which was truly normal, and in which I was almost perfectly down the middle of normal (except for very very low end of "normal" platelets). So at this point I am wondering if I am out of bound on asking my GP for a referral for a fine needle biopsy? Every appointment I'm only seen for about 5 -15 minutes then sent on my way, so it really feels like they don't care or don't have a clue. If nothing else I am hoping at least for a referral to an ENT.
This is completely depressing to deal with - which everyone here knows. But I am trying to remember the positive. Plus there are positive indications as well - I am still very physically active (working out, riding, running 5 days a week), I feel generally okay/healthy, I sleep just find and most of the aforementioned symptoms have not returned lately. I had a close friend go through this with the same results - being told everything is okay, he doesn't need a FNB only to have his FNB come back and say stage 1 cancer! Thankfully he was treated and recovered. If he wouldn't have persisted he might have had a different out come. I can't help but feel like I am in the same situation.
COMMUNITY LEADER
Well, Cris, there's definitely something pervasive going on - despite all the negative tests.
Normally, I'd follow Occam's Razor and look for one single underlying cause. But in your case, there might be at least two:
- early hemachomatosis creating various bad effects (such as your heart SVT; and perhaps your early onset cataracts [without hyperglycemia] because of hyperferritinemia)
- some genetic immunodeficiency leading to the intractable cold sores, toe fungus, and also to the possible granulomas and to the lymphadenopathy
The geographic tongue is seen by most docs to be just an isolated, benign oddity; but I'd see it as as sign that there is other immune dysfunction present.
It's good that you are so thorough. I think your best chance is to become very educated in this theory as above; and then you can make a logical presentation to any consultant that you see, and hopefully get them to investigate. I'd want a serum ferritin test for starters. This is guesswork but that's the only way to proceed for now.
That's off the top of my head. What's your reaction? This can use further discussion.
Normally, I'd follow Occam's Razor and look for one single underlying cause. But in your case, there might be at least two:
- early hemachomatosis creating various bad effects (such as your heart SVT; and perhaps your early onset cataracts [without hyperglycemia] because of hyperferritinemia)
- some genetic immunodeficiency leading to the intractable cold sores, toe fungus, and also to the possible granulomas and to the lymphadenopathy
The geographic tongue is seen by most docs to be just an isolated, benign oddity; but I'd see it as as sign that there is other immune dysfunction present.
It's good that you are so thorough. I think your best chance is to become very educated in this theory as above; and then you can make a logical presentation to any consultant that you see, and hopefully get them to investigate. I'd want a serum ferritin test for starters. This is guesswork but that's the only way to proceed for now.
That's off the top of my head. What's your reaction? This can use further discussion.
1 Comments
hem-o-chromatosis :) not hema
COMMUNITY LEADER
Taking any immunosuppressive meds would likely be quite bad. Vaccines might be bad.
In another vein, blood thinners like aspirin, vit E, fish oil and even cinnamon would be bad.
In another vein, blood thinners like aspirin, vit E, fish oil and even cinnamon would be bad.
1 Comments
Once again, thank you for your time and feedback. Rather than put a long follow-up here I have sent you a message and friend request if you would like to provide any more insight. I have listed out in greater detail the reports I've gotten back, general medical history, and other possibly useful information in my profile journal.
Again, thank you, truly!
Again, thank you, truly!
COMMUNITY LEADER
"Since this started I have had problems retaining weight."
If it's from reduced calorie intake, then that's nothing to do with wasting from cancer. Immune system dysfunction can easily affect the GI tract and squelch the appetite.
"Hard gainer/ectomorph."
Bravo to you, for being knowledgeable on those terms and also for being dedicated in the exercise. What would life be without working out, eh? :)
If it's from reduced calorie intake, then that's nothing to do with wasting from cancer. Immune system dysfunction can easily affect the GI tract and squelch the appetite.
"Hard gainer/ectomorph."
Bravo to you, for being knowledgeable on those terms and also for being dedicated in the exercise. What would life be without working out, eh? :)
COMMUNITY LEADER
cris, everything here is screaming out to me, "forget lymphoma and zero in on the granulomas".
But still, we'll need more clues, in order to work out how the low platelets factor in.
But still, we'll need more clues, in order to work out how the low platelets factor in.
COMMUNITY LEADER
Thank you for your gracious expression of gratitude, I appreciate it.
"Over these past 7 months I've experienced labored swallowing, throat dryness, very mild hoarseness"
Whatever caused those symptoms (it is commonly strep throat, from strep bacteria) also caused the enlargement of the jugulodigastric node.
"[patient] ultrasound showed 10mm jugulodigastric node...(please do CT w/ contrast)..."
Since that node is deep and also behind a muscle, a CT can penetrate and see it better than the US that first spotted it - otherwise US is better on surface nodes. Using contrast along with CT means the CT can see the structure inside the node, not merely its outer dimensions. "Loss of hilum" would have been alarming for cancer, but thankfully you don't have that.
"glass of wine It doesn't burn or hurt per say but it certainly becomes uncomfortable."
Probably swelling, because alcohol is a vasodilator.
"Recently the area has started to itch, and the lymph node feels tight (if that makes sense).?" Yes, swelling again... plus the itch is likely caused by histamine produced by immune cells.
Btw, the "B-symptoms" from lymphoma are usually in late stage, not beginning.
"but touching it does make it feel more tender."
Probably you have still some reactive process going on inside there, even if there also is fibrosis.
"another CBC"
In the US, a CBC is around $35. So a doc should not be resistant to order such an inexpensive test for you there.
===================
Now let us switch to a grand view, considering the effects seen in your lungs and also liver via CT. Is it possible you might have had tuberculosis? The alarm word is "granulomas". Please research that a bit, then get back with any questions. Granulomas are something of a mystery entity, produced by the immune system and can be involved in mystery conditions. And granulomas can also fill up a lymph node.
Granulomas are found with TB, but also in a mystery condition called Sarcoidosis. Each can effect lungs, and less commonly the liver, and also neck nodes. Each can also cause throat symptoms.
In addition, a damaged liver can result in reduced liver-produced "coagulation proteins", which can cause easy bruising/bleeding, such as in petechiae.
Have you had the common "liver function" blood tests? If they are abnormal, I'd straightaway want testing done for the levels of your clotting proteins.
"Over these past 7 months I've experienced labored swallowing, throat dryness, very mild hoarseness"
Whatever caused those symptoms (it is commonly strep throat, from strep bacteria) also caused the enlargement of the jugulodigastric node.
"[patient] ultrasound showed 10mm jugulodigastric node...(please do CT w/ contrast)..."
Since that node is deep and also behind a muscle, a CT can penetrate and see it better than the US that first spotted it - otherwise US is better on surface nodes. Using contrast along with CT means the CT can see the structure inside the node, not merely its outer dimensions. "Loss of hilum" would have been alarming for cancer, but thankfully you don't have that.
"glass of wine It doesn't burn or hurt per say but it certainly becomes uncomfortable."
Probably swelling, because alcohol is a vasodilator.
"Recently the area has started to itch, and the lymph node feels tight (if that makes sense).?" Yes, swelling again... plus the itch is likely caused by histamine produced by immune cells.
Btw, the "B-symptoms" from lymphoma are usually in late stage, not beginning.
"but touching it does make it feel more tender."
Probably you have still some reactive process going on inside there, even if there also is fibrosis.
"another CBC"
In the US, a CBC is around $35. So a doc should not be resistant to order such an inexpensive test for you there.
===================
Now let us switch to a grand view, considering the effects seen in your lungs and also liver via CT. Is it possible you might have had tuberculosis? The alarm word is "granulomas". Please research that a bit, then get back with any questions. Granulomas are something of a mystery entity, produced by the immune system and can be involved in mystery conditions. And granulomas can also fill up a lymph node.
Granulomas are found with TB, but also in a mystery condition called Sarcoidosis. Each can effect lungs, and less commonly the liver, and also neck nodes. Each can also cause throat symptoms.
In addition, a damaged liver can result in reduced liver-produced "coagulation proteins", which can cause easy bruising/bleeding, such as in petechiae.
Have you had the common "liver function" blood tests? If they are abnormal, I'd straightaway want testing done for the levels of your clotting proteins.
COMMUNITY LEADER
"So at this point I am wondering if I am out of bound on asking my GP for a referral for a fine needle biopsy?"
Not out of bounds at all, in your case, to ask -- but I'd still expect a "no" answer for now.
Not out of bounds at all, in your case, to ask -- but I'd still expect a "no" answer for now.
2 Comments
I appreciate you taking the time to respond, and with so much depth. I went back a reviewed notes from my past GP visit (referral to CT Scan) and the results of the scan. Of note were....
"[patient] ultrasound showed 10mm jugulodigastric node...(please do CT w/ contrast)..."
CT Scan result notes:
-"Lymph nodes: no suspicious lymphadenopathy. Scattered small symmetric subcentimeter short axis cervical lymph nodes are noted without evidence of cavitation or calcification."
-"Lung apices: Biapical pleural parenchymal scarring is noted. Otherwise, lung apices are clear."
-"Paranasal sinuses: There is a subcentimeter right maxillary sinus mucus retention cyst. Otherwise paranasal sinuses are clear."
-everything else said "normal" and there were no measurements or sizes included in the report.
I was having right illiac fossa pain around the same time so they scanned that as well.
-"Liver: THere is no suspicious enhancing hepatic mass. .....there is a 4mm right hepatic lobe hypodensity, too small to characterize. Punctate right hepatic lobe capsular calcification is present on axial image 60."
-"Biliary System: ....gallbladder is partially distended and otherwise unremarkable"
-"Osseous Structures: Lumbosacral degenerative disc disease is present (I'm old, tall, and have carried a lot of weight for work)
-"IMPRESSION: Hepatic splenic calcifications suggest the sequelae of prior granulomatous disease"
-"IMPRESSION: Lumbosacral degenerative disc disease"
Latest Blood Work (the number in ( ) is what was listed as "normal range"). I have only pulled out the numbers I thought were of concern:
-Hb: 143 (130-178) {2019 it was 138 on a "normal scale" of 150-450}
-Hct: 0.42 (0.4-0.5)
-Platelets: 176 (150-400)
-Lymphocytes: 1.2 (0.5-4.0)
BMI = 20.7 185lbs, 79in, exercises 45 min/day (x5 days): Normal weight is 200lbs, exercise 60min/day (x6 days). Since this started I have had problems retaining weight. Hard gainer/ectomorph.
I am going to call to schedule an appointment tomorrow, for blood work and evaluation again. I don't suspect I will be seen until late next week at the earliest. If you have any additional questions or input I would appreciate the feedback. I am hoping this adds more context to the situation, and as always I thank you for your time, patience, and consideration.
"[patient] ultrasound showed 10mm jugulodigastric node...(please do CT w/ contrast)..."
CT Scan result notes:
-"Lymph nodes: no suspicious lymphadenopathy. Scattered small symmetric subcentimeter short axis cervical lymph nodes are noted without evidence of cavitation or calcification."
-"Lung apices: Biapical pleural parenchymal scarring is noted. Otherwise, lung apices are clear."
-"Paranasal sinuses: There is a subcentimeter right maxillary sinus mucus retention cyst. Otherwise paranasal sinuses are clear."
-everything else said "normal" and there were no measurements or sizes included in the report.
I was having right illiac fossa pain around the same time so they scanned that as well.
-"Liver: THere is no suspicious enhancing hepatic mass. .....there is a 4mm right hepatic lobe hypodensity, too small to characterize. Punctate right hepatic lobe capsular calcification is present on axial image 60."
-"Biliary System: ....gallbladder is partially distended and otherwise unremarkable"
-"Osseous Structures: Lumbosacral degenerative disc disease is present (I'm old, tall, and have carried a lot of weight for work)
-"IMPRESSION: Hepatic splenic calcifications suggest the sequelae of prior granulomatous disease"
-"IMPRESSION: Lumbosacral degenerative disc disease"
Latest Blood Work (the number in ( ) is what was listed as "normal range"). I have only pulled out the numbers I thought were of concern:
-Hb: 143 (130-178) {2019 it was 138 on a "normal scale" of 150-450}
-Hct: 0.42 (0.4-0.5)
-Platelets: 176 (150-400)
-Lymphocytes: 1.2 (0.5-4.0)
BMI = 20.7 185lbs, 79in, exercises 45 min/day (x5 days): Normal weight is 200lbs, exercise 60min/day (x6 days). Since this started I have had problems retaining weight. Hard gainer/ectomorph.
I am going to call to schedule an appointment tomorrow, for blood work and evaluation again. I don't suspect I will be seen until late next week at the earliest. If you have any additional questions or input I would appreciate the feedback. I am hoping this adds more context to the situation, and as always I thank you for your time, patience, and consideration.
Sorry that 138 was for my Platelets in 2019. I need to do a better job reviewing before hitting submit.
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