Nervous about lymphectomy and results

[leilajax]

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!

[Ken_PA]

Oh, I had to come back to see if your weight loss is due to hyperthyroidism.

How is your heart rate and BP?

[Ken_PA]

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.

[Ken_PA]

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?

[Ken_PA]

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 :)

[leilajax]

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!

[Ken_PA]

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.