Lymph node 2nd opinion?

[Animal_lover9]

I'm a 43yo female.  Prior history of cancer. Over 20 years ago. I am a medical mess..i.e. connective tissue disease,  fibromyalgia, sjogrens, AIED, stage 3 renal failure... I'm also on methotrexate.  I've had a axillary (armpit) lump for 2 months. Non painful, but I've noticed my shoulder is starting to hurt.  I'm always tired..like can't make it 3 more more hrs without a rest. I used to be a runner. I've lost 25% of my body weight in 3 months. Went to Dr. He put me on Cephalexin for 10 days. No change. In fact, my flank in that area is now larger. They performed an ultrasound last week. It came back as benign lymph node 1.7x1.4x.8 cm. He stated it "Requires no further follow up". I asked fo RC th ed report..he typed up a narrative to me as I just gave to you...size, benign and no further fu necessary...  I should mention I also have a mutated STK11 gene. I had a clear mammogram in Nov. Question: should I be getting a second opinion?

[Ken_PA]

"In 2017 I had a full amino acid workup done. Which put me as abnormal."
I think I've heard that some with CFS have that.

[Ken_PA]

Okay then, I think we can accept that it is genuinely BI-RADS 2. That then finally rules out cancer but still leaves us with the rounded shape. It's said for benign, that nodal L/W should generally be > 2. But there can be exceptions.

I took a look to find what a node with MTX-LPD should look like via sono, but couldn't. Would it be, like yours, avascular and (presumably) with the hilum present? I'd ask the rheumy about that, when asking about the possibility of MTX-LPD. I'd also ask the rheumy if they've personally had any cases with MTX-LPD. I'd ask the rheumy why they are so set against trialing withdrawal of the MTX to see if the node shrinks.

It could have taken months for a possible vicious cycle of MTX/kidney-damage to result in a cascade of symptoms. More supposition.

If you don't have MTX-LPD, only then we'd move on to assuming lymphadenopathy from immune conditions. I'd certainly think you've heard that a lot of things about fibro/CFS can't be explained.

Congratulations to you on doing well with the ovarian carcinoma from 20 years ago.

[Ken_PA]

As a side issue, I think we can get your calories up successfully :)  What do you think about a goal of 4 pounds in two weeks, for starters?

Have you tried yet with DIY liquid calories?

[Animal_lover9]

I drink muscle milk daily as well as protein shake supplements. I don't need to gain. I had two back fusions,  followed (each time) by lung collapses.  So I was down for 18 m. I could stand to lose a bit more, just concerned that 25% body weight loss in 3 m without trying is a bit fast. I do know I need to ensure the vitamins, etc are being met. Hence, why I'm logging everything.  I also set alarms on my phone to remind me to eat.

[Ken_PA]

"Leucvovorin... I'm also on folic acid the other 6 days per week."

I'd want to try a *methyl* folate. Your immune dysfunctions are associated with methylation disorders in some people. If you have a genetic condition (such as MTHFR) that means you can't methylate the folic acid sufficiently to make it active, and so you can't benefit from what you're presently taking.

Have you had a homocysteine blood test, which is like a proxy test for methylation?

[Animal_lover9]

Not that specific test, and definitely not recently.  In 2017 I had a full amino acid workup done. Which put me as abnormal.  Something to bring up to rheumatologist...

[Ken_PA]

Overall, what we want to do is to first identify what might be the worst possible diagnosis (even if it is not very likely), and then try to rule that out. I don't see much reason at this point to suspect lymphoma, nor what's more relevant (because of history, and the mutation) which is metastasis in the node.

Was the previous cancer a breast cancer?


"Question: should I be getting a second opinion?"

Well, I'd sure like to see the actual US report. Maybe that's all it says, but that's not enough IMO. Is the hilum present? Probably. But is the node asymmetrical? Hopefully not. Presumably there is no sign of calcification (which would be hard to miss on an US, and is a sign of metastasis).

But what about any blood flow shown on Doppler? If any, is that symmetrical? (hopefully so, because that tends more toward inflammation and not a focal cancer)

What we certainly don't want is to just dismiss the node, right? Not with your overall medical picture, we don't. We want to know what's in there, even though it's probably not cancer per se. That brings us to considering "Methotrexate-associated lymphoproliferative disorders"
https://www.ncbi.nlm.nih.gov/pubmed/25721751

So is the MTX causing your immune cells to proliferate or not? It's a known thing that happens from MTX, so has your rheumy talked about that? The full title of that 2015 paper is "Methotrexate-associated lymphoproliferative disorders: management by watchful waiting and observation of early lymphocyte recovery after methotrexate withdrawal." In other words, stop the MTX and see if the node shrinks - before it transforms into something worse. The results are very good: "we retrospectively analyzed 20 cases of MTX-LPD. Tumor shrinkage occurred in 18 of 20 cases, but only following MTX withdrawal"

How do we find out what's in the node? From a biopsy. Maybe a needle biopsy is even sufficient, and you don't need a surgical biopsy.

If the biopsy doesn't show suspicious lymphocytes, then you can relax and move on to suspecting inflammation from your hyperactive immune system.

All that is supposition, of course; but if the rheumy doesn't believe it, then I'd want to hear some good reasons why.

[Animal_lover9]

Ok, I've never seen a scan report this simplistic or basic before.


"Nonvascular ultrasound right upper extremity attention axilla.
Comparisons: prior breast ultrasound 11/28/2018
Indications: axillary mass, history of ovarian carcinoma
Discussion: in the palpable area of interest,  right axilla, no suspicious solid or cystic lesions. There is a benign lymph node 1.7x1.4x.8 cm.
Impression Finding: BI-RADS 2"


That's it....

[Ken_PA]

Hi, there's so much here to talk about, but let's just start off with two things:

1) hasn't your doctor said that most of your problems might be from the methotrexate? MTX can be toxic to the kidneys; and then once there is kidney failure, the kidneys aren't excreting the MTX as much as they normally would, so there is a buildup of MTX in the system. There can be a vicious cycle, it's as if you are taking a much larger dose which causes more and more toxicity effects.

MTX can also cause lymph nodes to enlarge, which we can talk about. MTX can also cause GI problems, which can lead to weight loss if you were then eating much less.

You might be especially prone to bad effects from MTX, maybe possibly that's because of the STK11 mutation - which might be affecting your kidneys.

2) It seems odd that this doctor typed up something himself instead of giving you the actual radiologist's ultrasound report.  Am I understanding correctly, that's what actually happened?? Or did he perform the ultrasound himself?

[Animal_lover9]

1. Rheumatologist referral to nephrology.  Appt on May 6th. Waiting 1.5 months.  I was having bad side effects.  They added Leucvovorin 5mg 1x per week 8 hr after my shot (.6ml of 50mg/2ml MTX). I'm also on folic acid the other 6 days per week. I was on the shot for 3 months prior to any weight loss???  Been on MTX a total of 7 months now. I do have celiac. I adhere to GF diet for years. I log everything into MyFitness Pal.  I've never been a large eater. I struggle to get to 1000 cal per day. Keeping in mind my carbs are less than 30% . All of this is while "pushing" myself to eat.

2. Yes, he typed up the "narrative " instead of posting the report to the portal. The ultrasound was done by an intern in radiology.