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Nervous about lymphectomy and results
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Nervous about lymphectomy and results

Two years ago I started a medication that "in rare cases lymphoma has occurred".  Shortly after I started the med I started bruising easily an my hair fell out in clumps.  I also got a weird chest pain that felt like a bubble was in the rear of my chest.  I stopped the med, the bruising stopped and slowly my hair stopped falling out, but the chest pain only continued.  My heart started skipping beats especially when I would bend over.  After a year of complaining and acid reflux and gallbladder issues were ruled out, I had an Eco-cardiogram which came back normal.  I began having unexplained weight loss (currently 93 lbs/ 25 lbs underweight) with no change in diet and exercise.  I began having severe upper back and back of the neck pain that is not muscular nor joint related.  I also had a multitude of other weird symptoms and was finally diagnosed with Hashimoto's via antibody tests.  However, the swelling of the lymph nodes in the back of my neck, right occipital, and both axiallary nodes continued to enlarge.  The are not tender to the touch, but the overall inflammation is extremely painful.  My CBC is normal, though always high RDW (not anemic), with only thyroid antibodies, mildly high blood calcium, and fluctuating bilirubin levels.  Oh and I always have protein spilling in my urine.  The neck and chest pain can get excruciating and antiinflamatory meds don't touch it.  I can feel the nodes knotted in the back of my neck and the axiallries were recently measured by US as 2.5 cm, though ct scan showed it as shotty adenopathy (along with the back of my neck).  My doctor said that the axiallary node is large enough that he scheduled a lymphectomy.  My father died at the age of 52 of mediastinal germ cell cancer and my aunt just lost a battle with breast cancer and subsequent lymphoma.  Ct scan also showed chronic sinusitis and I have had unrelenting drainage and sinus pressure that does not resolve with antibiotics.  Aside from Hashimoto's, I tested positive for a Lyme antibody band and am currently being treated with antibiotics.  Also, I feel the need to mention that during this 2 year time span, I was pregnant and oddly (3 previous healthy deliveries) hemorrhaged severely due to blot clots and required 2 blood transfusions.  I was never given an explanation.
Any information of what my history reveals to you, what I should expect with my lymphectomy, and how to calm my fears while I wait would be greatly appreciated!!!   I trust patients more tha I do doctors these days, so your opinions mean the world to me!
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1081992_tn?1389907237
"Two years ago I started a medication that "in rare cases lymphoma has occurred".  Shortly after I started the med I started bruising easily"

Did you have a CBC then? IOW, was there leukocyte suppression, or was WBC and platelet count okay?

What was the drug?
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4939681_tn?1361302899
I was on Luvox and Effexor (doctors thought my "weird symptoms" were anxiety, turns out it was Hashimoto's.  I do not personally have any lab results done during that time period, but I know that my WBC was lower than it was when Hashimoto's caused thyroiditis last year and I was put on methimazole (I do have results from that period)
WBC 3.2 (3.8-10.8)
RBC 4.62 (3.8-5.1)
Hemoglobin 11.9 (11.7-15.5)
Hematocrit 36.2 (35-45)
MCV 78 (80-100)
MCH 25.8 (27-33)
Platelet count 193 (140-400)
RDW 18.8 (11-15)
Absolute neutrophils 1690 (1500-7800)
Absolute lymphocytes 992 (850-3900)
Abs. Monocytes 349 (200-950)
Abs.eosinophils 160 (15-500)
Abs. Basophils 10
Since then my WBC has fluctuated from low normal to mid range, high RDW, high calcium constantly.  All rhematology tests have repeatedly come back normal, cleared by neurologist as well.  Whatever is in my chest creates difficulty swallowing and feels as though it parallels my esophagus/spine, yet was unremarkable on ct 4 months ago.
I truly appreciate your guidance and time!
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1081992_tn?1389907237
Hi, Leila, there was someone here roughly 6 weeks ago who had that feeling of not being able to swallow - yet there was nothing physical there. That wasn't you, right?

With regard to the initial bruising: in a blood cancer, that is because the cancer cells multiply in the marrow and crowd out production of platelets (and other blood cells) by the normal precursor cells. So platelets are low. But in your case, that doesn't seem at all likely because you reversed once you'd stopped the drug(s).

So why bruising? That could be from dysfunctional platelets. Or it could be from a 'clotting disorder', because 'clotting factor' proteins that are made in the liver are at low levels (or dyfunctional).

Or low platelets can results because something (like the immune system) is destroying them. The disease ITP is such a condition, but ITP wouldn't spontaneously reverse, either. Or a drug can destroy them.

Are you saying that you had a CBC done back then, but don't have the results (but can therefore get the results)? Or that no test was done then?

The significance is that if you had thrombocytopenia back then, it would be not fruitful to look for some exotic cause of the bruising.



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1081992_tn?1389907237
"Oh and I always have protein spilling in my urine."

Maybe because as you are losing weight you are breaking down muscle. Was your urine tea-colored (as in rhabdomyolysis)?
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1081992_tn?1389907237
"the axiallries were recently measured by US as 2.5 cm, though ct scan showed it as shotty adenopathy (along with the back of my neck)."

What was the shape of the 2.5cm node? Do you have the short axis dimension?

Since "shotty" means several small nodes, are you saying that the CT did not measure a 2.5cm node? That seems odd.
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1081992_tn?1389907237
Did any US of nodes mention fatty hilum (which means not-cancer)?

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1081992_tn?1389907237
For calming: would you say that your nodes behaved this way: did they increase in size quickly (not necessarily all together at the same time), but then leveled off and didn't get larger? Cancer wouldn't typically behave that way. An aggressive cancer wouldn't really just decide to get non-aggressive.

Also, the pain surrounding the nodes? That seems like inflammation. Biochemicals involved in inflammation like bradykinin result in leaky blood vessels that seep fluid and make for swelling, and bradykinin also causes pain.
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1081992_tn?1389907237
"Also, the pain surrounding the nodes? That seems like inflammation."

By that, I meant that it seems like inflammation apart from cancer. Lymphoma doesn't usually result in that inflammatory pain near nodes. It can, but it's not probable AFAIK.
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Everything you say makes so much sense!  Thank you!  Why can't my doctors say these things instead of shrugging their shoulders?  Anyway, blood tests were not done during my bruising period, as the drs just said to lower the dose.  Needless to say I tapered completely off in a matter of a month or so due to the scare.   The lymphectomy is scheduled for may 3rd, but my doctor put in a note to have it expedited sooner, since I am feeling so bad.  His concerns: chronic infection (though most nodes don't wax and wane- cervical node right is rock hard, like someone hammered a large marble in there, axiallary nodes are rubbery and movable (bilateral), chest nodes I know nothing about as i just feel their presence, but they never reduce just getting worse, occipital node right was large and fluid like but then reduced leaving something hard pea sized in it's place), lymphoma, sarcoidosis and other autoimmune disorders though ANA 1:40 ( low) and RA factor only 7.4.  Also HIV and hepatitis negative.  Lyme negative though many say it could be a false negative.
The doctor who performed the ultrasound said that in her opinion the texture appeared more indicative of chronic infection and autoimmune than carcinoma.  However I have been increasingly sick for 2 years now and abx show no improvement, so I can't help my internal fear, especially given my family history.  
It probably was me posting about difficulty swallowing.  (Embarrassed-  I meant to shoot you a PM thanking you for answering my questions). I had commented on someone else's post that had similar symptoms.  After your kind words I tried to resolve that my issue was just Hashimoto's, but my resolve is failing given the extent of how badly I feel.  It's one thing to feel like you've had the flu for over a year and are having difficulty swallowing, but another when you constantly have to resist the urge to claw whatever it is you feel in your body out.  I just want to dig in a rip it OUT.  
Thanks again for you quick reply and I'll take any info you can offer to heart bc, again, you make more sense to me than most doctors!!!
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4939681_tn?1361302899
Sorry just read all of your posts.
Urine is not tea colored.  Dr also said that there was a protein spill into a blood alloy test, but he said it wasn't concerning, just added to the big question.  Could be due to weight loss, but why am I losing so much weight?
Do not know the measurement of the node.  She did point at it on the screen and it was a long irregular oval.  She was baffled by the ct scan saying "shotty adenopathy" as we'll, but there is a 4 month time between them, so I don't know if that makes a difference.  She didn't say anything about fatty hilum.  Again, said texture appeared indicative of infection/autoimmune nature.
The nodes have def. slowly gotten worse over the last two years.  Every time they grow larger (I feel like they flare larger 2-3 times a month) I feel the inflammatory pain.

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1081992_tn?1389907237
Well, thank you, ma'am. Glad to be of some help. Yes, it helps to have a sounding board.

Yes, your whole situation seems more like runaway inflammatory processes than cancer. The rock hard node would be worrisome usually... but you do have high calcium (which is what makes nodes hard aka calcification). But any inflamed dead tissue can become calcified - it even happens in arteries in atherosclerosis -- which is not cancer, of course.

A node that is not rock hard but it still firmer than usual can be scarred, aka fibrotic, which means that inflammation and resulting damage was occurring inside the node.

"I just want to dig in a rip it OUT" You made me laugh because I was going to ask if you have an intense personality :) An intense personality might be associated with a highly active immune system.

"However I have been increasingly sick for 2 years now and abx show no improvement"  Remember that most of feeling bad during an infection comes not from the invading pathogen but from the immune reaction itself - and an immune reaction can take place without an invader (autoimmunity, autoinflammatory conditions) or an immune reaction can go on after the invader is killed off. Or an invader like Lyme can flare up and subside.

Pathogens that hide inside cells are tricky. Some hide inside immune system cells.

"so I can't help my internal fear, especially given my family history" Yes, that's perfectly natural and understandable. But, I don't really know that non-Lymphoma cancers in ine's FX predispose to Lymphoma. Some Lymphomas are not heritable anyway, one's risk isn't raised because a parent had it.

Tell me if this makes sense: if you suspend any disbelief and forcefully choose to believe that your own thoughts of things working out well could actually make things work out well, then that would take away a lot of worry and anxiety - and make the next two weeks go by much better. Plus, the strategy might actually be true :) The mind can influence the body, especially the immune system.
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1081992_tn?1389907237
"but why am I losing so much weight?"

Well, it's true that cachexia results from cancer. But it's not well understood and it might be that cancer--> systemic inflammation--> proteolysis--> cachexia

Maybe in your case, you don't have the first step (cancer) but you do have the inflammation and then the downstream effects.

A source of node pain is when they expand due to immune cells multiplying. This stretches the surrounding capsule (membrane) and causes pain. Like a pimple. OTOH, a cancer typically grows right through the capsule, like tiny plant roots growing though any barrier. That's what also makes the node not movable, because it grows into surrounding tissue, like sod being attached to the earth.

Btw, you should get a copy of every test you've have since forever. Not the actual scan images, but the reports. Plus any blood tests, etc.
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1081992_tn?1389907237
"Again, said texture appeared indicative of infection/autoimmune nature."

That was probably "architecture". A node has internal structure. Think of a tomato, with ribs and seeds and pulp, etc. Now think of a potato, it's all the same... a homogenous structure, like a cancer where all the cells are the same and they just keep multiplying and replacing everything that was normally there.

The architecture gets "effaced".
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1081992_tn?1389907237
"The nodes have def. slowly gotten worse over the last two years."

The 2.5cm is still just within range for a reactive node, I'd think.

"I feel like they flare larger 2-3 times a month"

Try to notice if there is a trigger. Something in the environment, Maybe stress. Contact with animals. Different food. Sometimes it's just a mystery.


Right after your biopsy, ask the surgeon how the node looked, and how the surrounding tissue looked. If he says it didn't look like cancer then you'll feel better while waiting for the pathology report.


Go to go now, have a good evening.
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4939681_tn?1361302899
Wow, just... wow!  I really appreciate all of your advice.  Everything you've said makes so much sense and really clicked with me.  Your tomato analogy was spot on helpful!  LOL, yes I do have an intense personality lately.  I've gone from perfectly normal, to feeling like a tortured animal.  Over the course of two years, it's gotten to be too much.  There really isn't a trigger to the flare ups, unfortunately bc I have been keeping a journal.  It's just turning into a steadily increasing downward spiral.  Having a diagnosis should offer mental relief and until then I will try my best to take your advice and suspend all disbelief.  Do you think a single lymphectomy will harbor all the information that my doctors need to diagnose my illness/disease?  For instance most of my issues are in my neck (deep cervical) and chest, but the large axiallary node offers my doctors easy access, so that's what they are testing.  Is that going to give them information about my neck and chest?
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4939681_tn?1361302899
Just got a call with more lab updates:  CMV neg, EBV pos but too low to be active, bartonella neg, SED rate only 2.  Doctor said, "I think it's lymphoma.  I'm sorry.  Do you have an oncologist?"  She either forgot or I didn't mention my upcoming lymphectomy during our appt 2 weeks ago.  Why are my symptoms all over the place and nothing is showing up on the blood work?  Does that happen?  Next Friday seems so far away!  Couldn't this be expedited sooner?
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1081992_tn?1389907237
I wouldn't panic just yet. The GP is merely saying, "I don't know what it is and lymphoma does cause bumps". If you have some rare mystery immune condition, a GP wouldn't ordinarily know about that.

I respect how GPs have to know about so many conditions, but rare stuff that they don't see isn't included.

You can ask for a sono of that the most suspicious node. Remember the architecture? You might get a sono faster than waiting for a surgeon.

Besides, nodes have a job to do. No one would say that a patient's hand has some problem, so cut off a fingertip and do some tests on it.

Some causes of general lymphadenopathy are here:
http://www.aafp.org/afp/1998/1015/p1313.html#afp19981015p1313-t4

So there are more causes than you have been tested for.

"Do you think a single lymphectomy will harbor all the information that my doctors need to diagnose my illness/disease?"

You have a good point, but I doubt anyone would do more than one site. Did the surgeon consult on which node to take?

I'd ask for an LDH (inexpensive) blood test in the meantime.
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4939681_tn?1361302899
Thanks again, Ken!  None of my doctors checked my other nodes.  The axiallary is just the most palpable and it was much easier to go through my OB to get the us on that one.  The cervical node is at the base of the skull and deep.  My chiro noticed it when he was doing some sort of pressure point massage.  That one is on the right side (opposite of the axiallary to be biopsied).  Also on the right side is the weird chest pain that parallels the spine/ esophagus and the occipital node that flared and left a pea size rubbery mass behind when swelling reduced. The axiallary node right is also enlarged (large marble sized), but not a cluster-like oval of masses on the left (for biopsy).  The doctors never have asked for sono's of the others nor even felt them.  Again, I had to be sneaky and go through my ob to get the sono of the left.  Otherwise, they just look at my blood work, say everything's fine and send me to another office.  I've pretty much been passed around this year.  
I will request the LDH test and a sono of the right cervical node and also a sono of a golf ball sized lump (movable, close to aorta, just above belly button) in my abdomen RUQ.  It causes a dull aching tightness (GI labeled "colicky") but related somehow to all of this as it popped up when everything else went awry.  All doctors have taken keen interest in this abdominal bump, but have yet to figure it out either.  My body is a sci-fi exhibit I think.
Thank you again!  Out of the dozens of doctors I've seen you certainly give the best advice.  Wishing you the best!
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1081992_tn?1389907237
Sorry, I'd forgotten that you'd already had a sono on that 2.5cm node. it would be most interesting to see if the report mentions 'fatty hilum'. It's presence pretty much means "not cancer". I'd call and ask someone to read it over the phone or email that to you.

Look here for fatty hilum:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324368/
"Ultrasound of malignant cervical lymph nodes"
2008

I don't think that the body-sided of neck nodes would relate to the body-side of below-neck nodes, they don't drain on same paths.

Deeper nodes can't be scanned in detail by sono, AFAIK.

"golf ball sized lump (movable, close to aorta, just above belly button) in my abdomen RUQ"  That is a cyst, maybe? Some huge aggregated granuloma?

"My body is a sci-fi exhibit I think." Yes, that makes me think it's an exotic immune condition (not limited to Hashi's), but not cancer.

May 3rd is fast approaching.

Thanks for the compliment, and glad to be of help :)
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1081992_tn?1389907237
Also, this is noteworthy:
http://www.aafp.org/afp/1998/1015/p1313.html#afp19981015p1313-t4
"If possible, the physician should not select inguinal and axillary nodes for biopsy, since they frequently show only reactive hyperplasia."

...which is why I'd asked if the surgeon agreed on the selection of that axilla node.

Also, although you are negative for Bartonella antibodies, the symptoms fit (neck and axilla nodes, pain, fibrosis left behind) that I'd wonder if you have it but somehow the test missed it. Or a different strain or whatever. Do you have a cat or other pet?

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1081992_tn?1389907237
New theory:

"Shortly after I started the med I started bruising easily an my hair fell out in clumps.  I also got a weird chest pain that felt like a bubble was in the rear of my chest."

Since your SSRIs predispose to bleeding, maybe you have developed a series of hematomas (a known, rare side effect). Some don't go away (rarely), but get bigger. Some get hard. Maybe even the "hard nodes" are really hardened hematomas.

In which case, the axillary node is reactive to something else coincidental, and a benign biopsy won't be of any value to you.

"hemorrhaged severely due to blot clots and required 2 blood transfusions"
maybe you are predisposed to bleeding, and the drug(s) put you over the edge.

Btw, the SSRIs probably caused your arrhythmia.
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1081992_tn?1389907237
Oh, I had to come back to see if your weight loss is due to hyperthyroidism.

How is your heart rate and BP?
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4939681_tn?1361302899
Wow, again!  Heartrate ranges from 65-95.  Has gone to 140, but that was under stress.  BP today was 94/60.  It has been low for a couple of years now and uncomfortable low.  Dizziness, with vision and hearing loss upon standing.  I have fainted a few times as well.  
Would hematomas not show up on ct scan?  I have some sort of growth on my neck that is long and runs along the left coratid.  Since 3 doctors couldn't figure it out an us of the coratid was ordered last summer.  The coratid itself is fine and measured fine and proportional to the right coratid, so why does the one on the left bulge so much?  Could that be a hematoma?  Yet, another thing to add to the multiple diagnoses list.

To update:  pcp saw me today and wanted to have right axiallary node sono'ed as well.  I asked about the cervical node and she was able to palpate it and 1 under the chin and 2 on the front right of neck that I had not noticed before.  She said the occipital was a cyst formed after a flare up.  Also, she said the abdominal bump that moves is most likely a hernia, since it pops out when I relax my muscles, but she didn't say anything more about it.
Today, I had the same imaging doctor as before with the left axiallary.  The right is large, not as big as the left and in her opinion a "reactive" node.  She reexamined the left and was surprised to see it still large and in charge.  While she was on the left she said that she was also going to write up in my report that the artery near the node was grossly enlarged, so much so that it took her a while to discern that it was actually an artery.  I really trust this imaging doctor, so if she thinks it's reactive then I will stop freaking out about something cancerous going on.  She also gave me the old report of the left axiallary:
"A prominent axiallary lymph node is noted measuring 1.5x.7x2.5 cm.  the node retains it's fatty hilus and demonstrates normal vascularity on color Doppler evaluation.  There are no solid or cystic masses within the left axillary.  No fluid collections are identified."
"Fatty hilus" was mention just as you said!

While typing this the surgeon called.  After getting today's us report, they have decided to schedule me for surgery tomorrow.  I don't get it?  Why would today's report make them want to bump up the date?  

Whatever, the sooner this nightmare is over the better!

Thanks again, Ken!  Nice to see you were right about the left axiallary report!  Had a feeling you would be.  You were able to calm me a lot through this and I deeply appreciate it.  I will keep you updated on lymphectomy and results just in case you are curious.

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Oh, btw:)....
I am continuing to lose weight even though I have not been hyperthyroid since August 2012.  Weight loss has always been a constant steady just before, during and after hyper phase.

I agree bartonella fits the bill, too and though I do not have pets, I coincidentally tried to adopt kittens from a pet shelter on 4 different occasions, but each time was given a call saying the kitten turned out to be diseased and had to be euthanized.  I had played with the kittens a few hours each.  I remember being infuriated bc I found out I was pregnant shortly after and was a mess worrying about the pregnancy and questioned the shelter about why they would allow me to play with the kittens without testing them first.  That being said, I don't remember a specific feverish scratch.  The whole month following I was really really ill, but I think it was due to having to taper off of the ssri's.  again, always a billion factors!  I always thought my doctors were morons for not being able to help me, but now that I type this out it IS one giant cluster of possibilities.  A sci-fi exhibit precisely!
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1081992_tn?1389907237
Hi, Leila. To focus for now only on what relates to tomorrow:

When she did Color Doppler on the node and saw nothing wrong, that means there were not new blood vessels formed to feed a cancer. So that's also a very good sign.

If the surgeon wants to take the node that seems fine on sono? That makes no sense. I'd ask him about it, that's your right to know.

But here is probably the key: "that the artery near the node was grossly enlarged". I'd guess that maybe that's from some type of arteritis (inflamed artery, maybe from infection). More than one site (axilla and carotid) would be called polyarteritis. But the surgeon might suspect that its cancer. I bet not. (Surgical doctors usually want to think that they are also good medical doctors.)

Whoever is accompanying you should have a pad and pen to take notes, especially writing down any technical terms (and ask how to spell them).

I'd tell the surgeon that you want to know immediately after the surgery: how did everything LOOK. If he won't be around afterward, have him dispatch someone to relay the summary to you. Then you won't be stressed out in limbo waiting days for the report. Also, make sure you eventually get a copy of the pathology report.

I think that after the biopsy, the thing to do is not think about this for one or two days, then do some detective work on what was wrong with those kittens. I bet you caught some microbe. Tapering SSRIs didn't make you that ill. I think the kittens incident is central (and getting actually scratched is not required to get the microbe, even licking can do it).

Okay, I won't burden you with other things for now. But I can't wait to hear what happened :)  What suspense, huh? Good luck, and I bet that you will be happy with the biopsy results!

P.S. If you are under anesthesia, don't say out loud "all doctors are morons" until well after the surgery is over   LOL
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1081992_tn?1389907237
or a flea bite
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4939681_tn?1361302899
I hadn't read your above post until just now.  I needed that giggle more than you know right now.  

I just hopped over to let you know I just got a call from my biopsy ordering intern.  Biopsy results as follows:
Smears for infection: negative
Malignancy: negative
"Reactive node most likely due to vasculitis"
The intern said that he was going to consult with those in the area of expertise of vasculitis and that he will most likely start me on steroids ASAP.

He didn't say anything more.  Of course, the first thing I did was ask dr goggle what vasculitis is and... it doesn't look like it's good news at all, though dr google is quick to tell you the worst.

Anyway, you were amazing talking me through all of this.  I really can't thank you enough.  You are brilliant and kind and... well... I am deeply appreciative for your advice and comforting.
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1081992_tn?1389907237
Hi, I just happened to be online when the notification about your reply came in. If you scroll above, you'll see where I thought you would be diagnosed with arteritis --- which just means having vasculitis in an artery. (The other kind would be in veins.)   I wouldn't get too alarmed about it. It's the same old mystery immune condition as always :)

So, that's GOOD news in effect, you have arteritis in the artery leading to that node -- you don't have cancer.

Next time I'm here, I'll post something about how not to gain fat on corticosteroids - and how not to need diuertics.

Thanks for the nice compliments, and thanks for the update.
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