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
"As for the heart issue: It started in 2008"
Okay, then we can discard SCD. Probably. But check if any future episode has irregular beating. Keep in mind that the heart episodes are an oddity that might be related to everything else. This is called Occam's Razor.
You might know that the max heart rate that you can achieve declines with age, and is generally 220 - age. It's a casual, back of an envelope kind of thing.
"Behind the jaw bone one finger width up (but below the ear lobe) I noticed a very hard knot... just muscle or tendon"
Muscle wouldn't be *very* hard. But if the bump isn't more or less rock hard, then it's not calcification.
So then, Cris, if you accept that you shouldn't worry about lymphoma, what would be your chief complaint at this point?
Okay, then we can discard SCD. Probably. But check if any future episode has irregular beating. Keep in mind that the heart episodes are an oddity that might be related to everything else. This is called Occam's Razor.
You might know that the max heart rate that you can achieve declines with age, and is generally 220 - age. It's a casual, back of an envelope kind of thing.
"Behind the jaw bone one finger width up (but below the ear lobe) I noticed a very hard knot... just muscle or tendon"
Muscle wouldn't be *very* hard. But if the bump isn't more or less rock hard, then it's not calcification.
So then, Cris, if you accept that you shouldn't worry about lymphoma, what would be your chief complaint at this point?
1 Comments
Ken, that is a great question and something I have been struggling with since I got the latest bloodwork back. I am at a loss. I had right side jaw pain for about a week - up until yesterday actually. The node (submandibular I believe) is still swollen, it seems even more palpable, and I even notice it in the mirror now. I get some discomfort below the node down my deck to my collar bone - but this isn't constant. I am at a loss. There is obviously something going on. I need to go back over all my notes, bloodwork, and suggestions you have offered again. My doc isn't likely to see me anymore in regards to this, pending a drastic change, so that avenue of input seems lost.
I suppose all I can do is monitor my health and if something drastic changes go back to my GP. It just worries me that something my be manifesting silently, that I could stop it early, and instead the problem is just going to get worse. I've made diet changes, continue to exercise, and am trying to reduce stress. For now I am still at a loss...
I suppose all I can do is monitor my health and if something drastic changes go back to my GP. It just worries me that something my be manifesting silently, that I could stop it early, and instead the problem is just going to get worse. I've made diet changes, continue to exercise, and am trying to reduce stress. For now I am still at a loss...
COMMUNITY LEADER
Inflammation of the heart muscle can affect electric conduction and make the heart not pump efficiently. Heart block. Nothing to do with atherosclerosis, aka blocked arteries.
2 Comments
Thanks for the feedback Ken. As for the heart issue: It started in 2008 during a 10 mile race. I got to mile 9 and my heart suddenly went crazy, to the point I had to stop and walk for almost the last mile. It recurs every now and then when I am pushing myself and not focusing on my breathing. From 2015-2017 I could always feel it coming on and sure enough I would look at my HRM and see myself spike into the 180s or even 190s briefly. I'd have to walk a bit and then slowly start running again. From 2018 on it does it at a much lower range 150s/160s, which is even more depressing. In early 2018 I had a test done where they hooked me up to a bunch of heart monitors and sensors and put me on a treadmill and tried to induce it (recreate it). In the end they said the test was inconclusive but they did admit something was amiss. I think I still have the whole EKG print off somewhere. The truly disturbing thing was it happening a few time from '15-17 when I was doing almost only weight training. Thankfully it has happened since.
I had a nurse friend of mine feel around my neck on the "node" behind my jaw (below my ear lobe), and they thought it was just muscle or tendon and not a node or swelling. I will chalk that one up to paranoia for now, but keep an eye on it.
I had a nurse friend of mine feel around my neck on the "node" behind my jaw (below my ear lobe), and they thought it was just muscle or tendon and not a node or swelling. I will chalk that one up to paranoia for now, but keep an eye on it.
Edit: hasn't happened during weightlifting since 2018. It does occur out of the blue on some hard runs, but not every hard run.
COMMUNITY LEADER
Well, we can rule out a genetic excess-iron problem, so that's some progress. The hard spot is probably a calcified node or a calcified nodule. Because of your history, I don't think that's a big deal - it's likely just the immune system going overboard in a new place.
Yes, mechanical stress can aggravate inflammation. Pollen can, too. Or a common cold virus. But I'd say the throat infection is driving all downstream inflammation, and other factors only aggravate that.
Circadian rhythms can cause feeling worse at night, with a spike in immune system activity.
'Had a nice little "heart fit" as I like to call it, on my run today.'
Okay, that's the thing I'd concentrate on for now. Make sure the beat is not irregular during fits, or anytime. Maybe your monitor does that, or else feel your pulse to make sure the beat is steady with no missing beats. Let me know about that when you check it. We want to be sure there is no viral myocarditis. Not to be alarmist, but to be prudent: the worst case is sudden cardiac death (SCD), which is what healthy athletes die of during exertion (2nd only to a genetic malformation of the heart, HOCUM). E.g., in many places even teenagers can't resume a school sport after a bad cold without an EKG first. Important: did you ever have that *before* the throat infection?
There is a guy who's been here off and on over a period of time, named Spartan. You can check out his recent post if you like, he's got similarities with you - but not the heart.
Yes, mechanical stress can aggravate inflammation. Pollen can, too. Or a common cold virus. But I'd say the throat infection is driving all downstream inflammation, and other factors only aggravate that.
Circadian rhythms can cause feeling worse at night, with a spike in immune system activity.
'Had a nice little "heart fit" as I like to call it, on my run today.'
Okay, that's the thing I'd concentrate on for now. Make sure the beat is not irregular during fits, or anytime. Maybe your monitor does that, or else feel your pulse to make sure the beat is steady with no missing beats. Let me know about that when you check it. We want to be sure there is no viral myocarditis. Not to be alarmist, but to be prudent: the worst case is sudden cardiac death (SCD), which is what healthy athletes die of during exertion (2nd only to a genetic malformation of the heart, HOCUM). E.g., in many places even teenagers can't resume a school sport after a bad cold without an EKG first. Important: did you ever have that *before* the throat infection?
There is a guy who's been here off and on over a period of time, named Spartan. You can check out his recent post if you like, he's got similarities with you - but not the heart.
COMMUNITY LEADER
"So now it's wait and see on what comes back with the blood work"
Okay, let me know.
Btw, many people with immune dysfunction eventually get (wrongly) told that it's all in their heads. They might get prescribed tranquilizers or anti-depressants.
Okay, let me know.
Btw, many people with immune dysfunction eventually get (wrongly) told that it's all in their heads. They might get prescribed tranquilizers or anti-depressants.
1 Comments
Well as the Doc expected, everything came back "normal". I updated my journal with the results and posted some screen captures (photos) for easy reference. One thing I noticed right off, Hb went down, WBC went down, Neutrophils went down. My Platelets went up slightly (although still at the bottom of "normal"), and there were minor improvements (I thought) on the Biochemistry Report. I came back "normal" on the Serum Ferritin test, but I am way at the bottom of "normal".
Meanwhile symptoms have only worsened, the node in question remains pronounced and quite palpable. There is tightness in my jaw on the same side as the swollen lymph node, there is a fullness/tightness/discomfort that radiates up from the submandibular to behind my jaw bone and down along my sterno (SCM). I do catch myself tilting my head oddly or my positioning my jaw oddly throughout the day (or creating a suction/tightness in my mouth, if that makes sense), and the jaw tenderness increases the more I rest my head on my hand. Additionally, every morning I wake up with a sore dry throat and hacking up phlegm, and every night around 8PM my sore throat starts. I'm not sure if this is just a nasal drip due to pollen/weather/etc., but the severity comes and goes. During the day I generally feel great. --- So more self-check-ins on posture and relaxing muscles, and more water consumption to see if things get better.
Most disturbing of all, on the day I went for the appointment I had some tenderness behind my right jaw bone and was feeling around. Behind the jaw bone one finger width up (but below the ear lobe) I noticed a very hard knot. It is not symmetrical at all with the left side, the right protrudes more. I'm not sure if this is a node, and misaligned disc, a knot in a muscle or what, but it feels pronounced. It doesn't really cause discomfort, but is disturbing none-the-less.
I should be relived with the blood work, but since I still have issues yet no answers I'm just more frustrated. My weight continues to drop slightly (down to 184) and I have noticed I am getting lightheaded more easily. Had a nice little "heart fit" as I like to call it, on my run today. My chest band HRM said I was only at 157 but I had to slow way down for 30 seconds, reset, then slowly get back up to speed. I still finished 4 miles in 32min, so it wasn't a total loss. That's more likely me just getting older and more out of shape, but still trying to go like I used to, haha.
Eager to hear any thoughts on all of this.
Meanwhile symptoms have only worsened, the node in question remains pronounced and quite palpable. There is tightness in my jaw on the same side as the swollen lymph node, there is a fullness/tightness/discomfort that radiates up from the submandibular to behind my jaw bone and down along my sterno (SCM). I do catch myself tilting my head oddly or my positioning my jaw oddly throughout the day (or creating a suction/tightness in my mouth, if that makes sense), and the jaw tenderness increases the more I rest my head on my hand. Additionally, every morning I wake up with a sore dry throat and hacking up phlegm, and every night around 8PM my sore throat starts. I'm not sure if this is just a nasal drip due to pollen/weather/etc., but the severity comes and goes. During the day I generally feel great. --- So more self-check-ins on posture and relaxing muscles, and more water consumption to see if things get better.
Most disturbing of all, on the day I went for the appointment I had some tenderness behind my right jaw bone and was feeling around. Behind the jaw bone one finger width up (but below the ear lobe) I noticed a very hard knot. It is not symmetrical at all with the left side, the right protrudes more. I'm not sure if this is a node, and misaligned disc, a knot in a muscle or what, but it feels pronounced. It doesn't really cause discomfort, but is disturbing none-the-less.
I should be relived with the blood work, but since I still have issues yet no answers I'm just more frustrated. My weight continues to drop slightly (down to 184) and I have noticed I am getting lightheaded more easily. Had a nice little "heart fit" as I like to call it, on my run today. My chest band HRM said I was only at 157 but I had to slow way down for 30 seconds, reset, then slowly get back up to speed. I still finished 4 miles in 32min, so it wasn't a total loss. That's more likely me just getting older and more out of shape, but still trying to go like I used to, haha.
Eager to hear any thoughts on all of this.
COMMUNITY LEADER
"There's a fine line when addressing a doctor, between coming off to brash or as ignorant, information overload/dumping or as a hypochondriac."
Yep, that is correct. Good luck.
Yep, that is correct. Good luck.
1 Comments
Well the appointment was a mixed bag. Good news: the doc agreed to another CBC and a Ferritin test. She was also open to the idea of a DNA test, pending the results of the other two. Bad news: she basically accused me of being irrational and having "medical anxiety", that we are probably at the end of examining the issue, and that I may just have to accept that this is the way it is and is never going to change. I can handle the last part - fine, so be it. But in order to reach that conclusion I believe we need to exhaust a little more testing and examinations. "Sorry I'm not an easy patient with obvious symptoms and clearly indicative results - medicine/medical practice is hard, so rise to the challenge Doc! Sorry I've had a relatively healthy life for 30+ years and now this has hit and is so disconcerting to me." - which is what I wanted to say, but kindly bit my lip. I could go on but it's best to let a day or two go by to let the nerves cool. It certainly wasn't what I would call a productive session.
Referencing back to the CT Scan - it was not the radiologist who make the mix-up (jugulodigastric vs submandibular) it was my GP! That's what she put on the referral to the the hospital for the scan. I'd like to think this was to ensure the CT Scan was approved rather than some mistake in identifying anatomy, however we're all human and I am grateful to have had the procedure.
So now it's wait and see on what comes back with the blood work. It seems a bit of a lose-lose situation though. Positive blood work results are just going to leave me confused, and still with no answers as to what's going on. Bad results .... well no one wants those.
Referencing back to the CT Scan - it was not the radiologist who make the mix-up (jugulodigastric vs submandibular) it was my GP! That's what she put on the referral to the the hospital for the scan. I'd like to think this was to ensure the CT Scan was approved rather than some mistake in identifying anatomy, however we're all human and I am grateful to have had the procedure.
So now it's wait and see on what comes back with the blood work. It seems a bit of a lose-lose situation though. Positive blood work results are just going to leave me confused, and still with no answers as to what's going on. Bad results .... well no one wants those.
COMMUNITY LEADER
"Just so I am straight here, are you leaning more towards hemochromatosis and less towards cancer (lymphoma, leukemia, or otherwise)? "
Nope, I think your immune system is doing the node.
"If it's not cancer than how do I get this thing back to normal?"
Ending any ongoing internal inflammation for starters. And hoping for some regression. Macrophages taking tiny tiny bites for years maybe.
"Drainage"
Nope, your scan would probably have seen cystic (fluid) areas, but saw none and that would have been alarming besides.
"surgery"
Yes, excision. But they won't do that probably, because it's benign. Even if you would pay privately, a surgeon might say it's not worth the surgical risk.
"medication?"
There are some for (deadly) pulmonary fibrosis, but maybe they don't apply and probably you would never get them. If you run across anything OTC being discussed, let me know.
Yes, I did notice that the "deep" sub-muscle node is palpable by you, but didn't address that with so much else going on. A sober radiologist would not make such a gross mistake, so I don't know the answer. It was also not very large for its type anyway.
Nope, I think your immune system is doing the node.
"If it's not cancer than how do I get this thing back to normal?"
Ending any ongoing internal inflammation for starters. And hoping for some regression. Macrophages taking tiny tiny bites for years maybe.
"Drainage"
Nope, your scan would probably have seen cystic (fluid) areas, but saw none and that would have been alarming besides.
"surgery"
Yes, excision. But they won't do that probably, because it's benign. Even if you would pay privately, a surgeon might say it's not worth the surgical risk.
"medication?"
There are some for (deadly) pulmonary fibrosis, but maybe they don't apply and probably you would never get them. If you run across anything OTC being discussed, let me know.
Yes, I did notice that the "deep" sub-muscle node is palpable by you, but didn't address that with so much else going on. A sober radiologist would not make such a gross mistake, so I don't know the answer. It was also not very large for its type anyway.
1 Comments
I am truly moved by your depth of response. You've taken your valuable time to lend a hand to a complete stranger. Thank you!
I have an appointment for next week. So now it's time to review all this and do some homework and prepare. There's a fine line when addressing a doctor, between coming off to brash or as ignorant, information overload/dumping or as a hypochondriac. I know I need to whitle this all down to succinct points, correlate it, and be prepared to answer questions that might arise on my end.
I did request another CBC and if that gets turned down I know of private clinics you can have it done. If nothing else more data is needed in order to get better analysis.
Thank you again.
I have an appointment for next week. So now it's time to review all this and do some homework and prepare. There's a fine line when addressing a doctor, between coming off to brash or as ignorant, information overload/dumping or as a hypochondriac. I know I need to whitle this all down to succinct points, correlate it, and be prepared to answer questions that might arise on my end.
I did request another CBC and if that gets turned down I know of private clinics you can have it done. If nothing else more data is needed in order to get better analysis.
Thank you again.
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