Parotid gland weirdness
August 5, 2014 9:08 AM   Subscribe

I've had what I thought was an enlarged lymph node in my neck for ~2 years, and am finally getting medical attention for it. I recently had a CT scan, and today the doctor's office called to request an additional biopsy w/ ultrasound. Biopsy and follow-up appts. aren't until the end of the month. I know that YANMD and TINMA, but could the hivemind help me to better understand what's going on so that I can be a more informed patient?

I've had a slightly tender, small lump in my neck, straight down from my left earlobe, for about 2 years now. It swelled up initially after having The Head Cold That Would Not Die, and seemed to just stay that way. I wasn't too terribly concerned at first, and my GP at the time said that it's common for some lymph nodes to remain swollen long after the initial illness fades. I was told to check on it in another 6-12 months. I lost my health insurance in the interim and just got it again earlier this year.

I have a constant feeling of fullness and tenderness on that side, like something is blocked and can't drain properly. My inner ear often feels full and sore, my neck feels tender, and the left side of my face is visibly a little swollen compared to the right. My neck under my jaw seems to swell up in the morning, but it recedes as the day progresses. I have lifelong allergy issues and sinus woes, so I use Flonase daily and take a 24-h Allegra. I've been having a lot of sinus pain lately and that was why I went initially, along with the neck thing.

I'm a former smoker, had my tonsils &a adenoids removed as a kid, and I had mono in high school. FWIW, I've never felt the same since and have a lot of chronic fatigue- or fibro- type symptoms, but I haven't been diagnosed with anything yet. (I just finally found a doctor who was willing to take me seriously this year, so I'm in the process of getting help with this.)

I went to see my new ENT in June. He did a FNA biopsy of the lump, and the initial results came back as benign. He ordered a CT soft tissue scan w/ contrast, and this is what came back:
-lots of small lymph nodes in neck; none significantly enlarged and no necrosis
-8x9x10mm "superficial soft tissue nodule of uniform density in the posterior tail of the left parotid gland, likely intrinsic, with a few other smaller intrinsic nodules present." So, multiple intraparotid lymph nodes, on both sides of my neck.
-parotid glands are "prominent in size but have normal CT density"
-thyroid, tonsil area, submandibular glands, etc. all looked normal

I looked at my CT scan results, out of curiosity, and there's clearly an enlarged something-or-other on the left side of my face that isn't present on the right. So I'm guessing that's my parotid gland?!

My questions are:
a.) first of all, is there anything I can take to deal with the occasional swelling and discomfort other than ibuprofen?
b.) based on these results and the request for an additional biopsy, should I be super worried about this? Dr. ENT wants to get the finer-tuned biopsy "just to be safe," but my brain is interpreting it as "OMG CANCER that's what you get for using a cell phone all these years!" :P
c.) can anyone suggest further questions I should be asking of Dr. ENT, and/or anything important I might want to read up on in relation to this?

Thanks in advance!
posted by cardinality to Health & Fitness (7 answers total)
Yes, ask your ENT about salivary stones (sialolith - previously).

My mother's ENT taught her a facial massage and prescribed Lemonheads, but you should talk to the doctor before you start doing anything proactive. Unless you just like Lemonheads/Sour Patch Kids. You might actually have a persistent infection that needs to be treated before you do anything else.
posted by Lyn Never at 9:17 AM on August 5, 2014

Best answer: Sialoliths typically cause intermittent swelling when you eat (while your salivary glands are producing saliva).

The CT scan essentially says you have a nodule in your parotid gland - which may or may not be a lymph node in it, the read doesn't specify. A nodule is like a small soft tissue mass, which does not mean cancer, it just means a mass until you know what it's made of. Masses can be benign, and the fact that you've had this one for years and that it hasn't changed much is reassuring in terms of whether it's benign or not - as well as the fact that you had a biopsy already that was benign, of course!

To simplify terminology even further, benign means not a cancerous mass. Malignant is a cancerous mass. Intrinsic means it's coming from within the gland itself, whereas an extrinsic mass would be coming from outside the gland. If you'd like to know more, here is an eMedicine article on Benign Parotid Tumors. If I were you, I wouldn't look at worst case scenarios until you have more information from further testing, especially given your negative biopsy, but I prefer not to scare myself until I need to get scared, personally. As noted in the link, most of these types of things are benign. Here is a link to a patient in a similar situation to yours (although not quite the same) with an answer from a doctor, you might find it useful.

Ask your doctor about what you can take for the pain if ibuprofen is not adequate. Aleve (naproxen) is another NSAID over the counter, and Tylenol is fine as a general pain reliever for most people. I'm not your doctor, this is not medical advice, just general information about nodules in the parotid gland. Hope you're able to distract yourself and relax.
posted by treehorn+bunny at 9:40 AM on August 5, 2014 [2 favorites]

I had such a lump recently, and they decided it was a benign tumor after extensive biopsy stuff, and I was all OMGcancer, and they shrugged and cut it out, and aside from a scar and some surgery I'm OK. I'd continue to investigate. Memail if you have procedural/experience questions, I can't offer any diagnostic info as I'm not a doctor.
posted by ead at 10:58 AM on August 5, 2014

Best answer: I am an ENT doctor. I agree with what treehorn+bunny said above. The mass in your parotid tail could represent a lymph node but more likely represents a small neoplasm (aka tumor, which just means "growth/mass.") 90% of parotid tumors in adults are benign but that means 1 in 10 is cancerous and needs to be treated. Yours sounds like a very typical benign tumor since it hasn't grown significantly. There are a zillion types of salivary tumors, but the most common is called a pleomorphic adenoma. There is a small but real chance that even if a pleomorphic adenoma is benign now, it could become malignant later (a progression to a tumor called a "carcinoma ex pleomorphic").

So, there are two ways of going about working this up. The first and most definitive is to have it taken out with a surgery called a superficial parotidectomy. This is not a small surgery and carries with it some risks, though a parotid tail lesion is the least risky to remove. Just find a good ENT who has done a lot of these and who will use a facial nerve monitor during surgery. Advantages: you get a definitive diagnosis and definitive treatment for benign disease. Disadvantages: It's surgery. Expensive, one night in the hospital with a drain in your neck, possibility of complications.

The other way to work it up is with an FNA. Your first one was "benign," but what did that mean? Were they able to characterize the tumor? Did it look like a lymph node? Is it just fat cells, representing a lipoma? There may be more info on the path report (but there's probably not if he is recommending another FNA). Advantages: Some results will give you a >99% certainty that this is nothing major and you can sit on this indefinitely without going to surgery. The other advantage is that if the FNA reveals cancerous cells, you'll know that you have to have it out. Disadvantages: if the FNA doesn't give you a relatively certain diagnosis, you're back to square one.

My mentor never got an FNA and it used to bother me, but his rationale was that they are so often inconclusive that you end up going to surgery anyway. I offer patients FNA, but explain the pros/cons. PM me with any questions!
posted by robstercraw at 12:31 PM on August 5, 2014 [2 favorites]

I had a lot of your symptoms. Very gentle lymphatic drainage massage helped me
posted by claptrap at 3:53 AM on August 6, 2014

Response by poster: Thanks for the replies, all! All of the information was helpful so far; I learned a few things that I hadn't found yet via Dr. Google.

I requested the results from the first biopsy; apparently the sample was mostly lymph but too diluted with peripheral blood for analysis, and no malignant cells were found, so that's the good part. So I'm guessing the dilution is the reason for the 2nd biopsy via ultrasound guidance, maybe he didn't quite get the right spot on the first try in the office.

I'll update this when I get those results back, in case this information would be helpful for anyone else.
posted by cardinality at 7:34 PM on August 8, 2014

Response by poster: I'm back with an update. After the FNA with ultrasound guidance, they discovered that I basically have the same benign multiple-lymph-node enlargements in my parotid glands on both sides of my face. The one on the left that's been bugging me is annoying, but Dr. ENT recommends that we wait for now and do a CT scan again in 4-6 months to see if there are any changes.

In the meantime, he ordered an ACE blood test (angiotensin-converting enzyme) to check for possible sarcoidosis, and it came back slightly elevated at 77 where the lab cutoff is 67.

I just saw him today and he didn't feel that I was showing quite enough symptoms to do a prednisone trial or anything yet. My recent bloodwork from my PCP was showing some borderline-low Vitamin D, elevated creatinine, low MCH (I need to look this one up), and low total protein. My TSH went up from 3.95 to 4.02 since March, so he ordered a bunch of thyroid tests, plus ANA, SED, and Epstein-Barr, and is going to have my PCP refer me to a rheumatologist. (Adding links in case anyone is interested in reading more about these tests.) I've had multiple things checked out over the past month -- it's been like playing Health Care Bingo! -- so I might do a new post to ask questions about some of the results.

Luckily, Dr. ENT said that autoimmune issues are "kind of a special interest" of his, so he's been willing to work with me a bit more than Dr. PCP.

I am really grateful that the neck stuff is benign and that I am making some headway with figuring out what my autoimmune situation might be. If this helps anyone down the road: do your research, keep advocating for yourself, and don't give up!
posted by cardinality at 1:33 PM on September 3, 2014

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