None of us ever want to go to the doctor: Lymph Node Edition

December 19, 2017 2:37 PM

So I still have this lymph node situation. Provisionally diagnosed with a Bartonella infection and prescribed antibiotics. The testing came back negative for B. henselae, though. Testing also came back negative for, like, literally everything else. I got a referral for a biopsy, but I kind of don't want one? Can it wait another month?

Since testing came back negative, I didn't initially take the antibiotics (under doctor's advice). The node remained swollen and painful for a month, so I called back for a follow-up and was advised to take the azithromycin (which I did). That didn't clear it up, so I went in last week for a re-check and a gyn exam and All The Tests, Basically.

All my bloodwork is completely normal, my overall health is totally fine, serology unremarkable, no STDs, no tuberculosis exposure... so the options appear to be 'weird cancer that somehow isn't affecting bloodwork at all' or 'idk ideopathic something bodies are strange.' GP said to schedule for a consult with a surgeon connected to the practice and to schedule a CT scan, and gave me referrals for each, but the surgeon's office turned me away, since apparently the surgeon doesn't usually do consults for weird nodes and usually just does colorectal stuff. The GP got back to me just now and he was basically like 'yeah, his office staff are trained to do that, I cleared it with him personally, so you can call back and press the issue.' They're already closed for the day, though, and the CT is scheduled for tomorrow.

I asked if I could just wait til the new year for all this, because I think the nodes are getting smaller, and they're definitely not sore any more. GP is okay with this. The primary downside to waiting is that my deductible will reset in January, and my coverage will be worse then. But the CT isn't diagnostic, it's just to assist in the biopsy, which I'd really rather not have if it's not actually necessary. I think cancelling and waiting until January to reassess is probably fine. The GP seems to think it is fine. I'm not overlooking anything here, am I?

posted by halation to Health & Fitness (14 answers total)

I know you want to assume this is nothing. Maybe it's nothing. But what if it isn't, and you've let something that could kill you grow in your body for an extra couple of months because you assumed it was nothing? If it were me, I would not wait. I would want to know what's going on.
posted by something something at 2:51 PM on December 19, 2017 [6 favorites]

Weird lymph node stuff can be cancer. Don’t wait.
posted by bq at 2:54 PM on December 19, 2017 [3 favorites]

Go now. If nothing else, CT scans are expensive af so get it while your deductible is going strong.
posted by ananci at 2:58 PM on December 19, 2017 [5 favorites]

IANAD but want to pass along that I've had various swollen lymph nodes for over a year. A year back I had surgery to remove the ones in my neck, then I suddenly got a new one in my parotid gland.

They always biopsy clean and like you, I have no infections anywhere and I've been to a lot of specialists and essentially it's come down to it's just a thing my body is doing.

I get ultrasound biopsies every few months and eventually I'll consider surgery but wanted to pass along this can be a weird thing that happens but that's all it ever turns out to be. But I am working with a head and neck oncology surgeon and this is exactly his wheelhouse, so I think I'm in good hands.
posted by yes I said yes I will Yes at 3:39 PM on December 19, 2017 [2 favorites]

Go. In 2011 I had 'weird cancer that doesn't affect the bloodwork'. It was lymphoma and one of the major symptoms I experienced was swollen lymph nodes...but my blood work looked great. I ignored symptoms long past the time that they became evident (3 months or so of wondering what some lumps were) and ended up in a much more aggressive treatment situation than should have been necessary.

99.9% chance this is a big fat nothing. .1% chance you want to get on this as soon as possible. If it's the first, it's off your mind in time for Christmas. If it's the second, the best gift you can give your loved ones is to get into treatment immediately.

Good news: I'm 5 years cancer free, and treatment options for lymphoma have advanced in leaps and bounds over that time. Even if you need to get serious medical interventions, it's easier and more successful now than ever.
posted by DSime at 3:48 PM on December 19, 2017 [9 favorites]

Response by poster: A complicating factor (because of course there is one): I'm scheduled to leave the country on Thursday morning and won't be back until early January. I'm seeing family I rarely get a chance to see. Some of them are getting older, and an immigration status thing means I might not see some of them for a while if I can't go now. So it seems like the options are:

- Get CT tomorrow, schedule with surgeon when I get back, hope the surgeon is not all like 'this CT needs to be redone before I can do anything' so I have to pay for another CT and another consult and then get the biopsy

- Cancel CT tomorrow, figure it out/reschedule for January

- Get CT tomorrow, book with surgeon as soon as I can, cancel trip

Given the holidays I'm not sure he'd have availability anyhow, so mostly I'm trying to figure out whether option 1 or option 2 is wiser. I will call his office in the morning and try and convince his office staff to let me ask whether a CT will still be good ~ 2-3 weeks out, if a biopsy is needed.
posted by halation at 3:58 PM on December 19, 2017 [1 favorite]

Get the CT. Can you get a needle biopsy?
posted by yes I said yes I will Yes at 4:28 PM on December 19, 2017 [1 favorite]

Response by poster: They for-sure want to take them out instead of doing a needle biopsy -- possibly because there's two? Or possibly just because they want to get lots of material to sample, not sure. But the GP said the surgeon said full-on biopsy rather than a needle biopsy. (I will try to figure out why that is if I can get through to the surgeon tomorrow.)
posted by halation at 5:04 PM on December 19, 2017

Did they test to see whether your earlier tiredness was mono? I don't know that they could still detect it now, but if they can I would suggest it getting tested for that. In my early 20's I had something very similar sounding: very swollen and painful lymph nodes, tiredness which was bad but not extreme, and after a few weeks of that I was diagnosed with mono. My lymph nodes remained swollen, although not painful, for months afterward finally leading to a lymph node biopsy around 9 months later. It came back negative, thankfully. My doctors surmised that the swelling was residual from the mono creating an almost scarring effect on the lymph nodes. The swelling continued to go down very slowly over the next year or two, but I am left with a few larger than normal lymph nodes some 20 years later.
posted by scantee at 5:37 PM on December 19, 2017 [2 favorites]

Precisely what DSime said. I agree that this is probably nothing, but if you are like my brother, you will likely be grateful if it turns out to be, say, follicular lymphoma, and you caught it early by getting a CT scan/biopsy of the entire lymph nodes. Early detection can make a profound difference in treatment regimens and prognosis.

I'm gonna suggest Option #1. I wish you luck and hope you can address this AND have a chance to see your family. If you feel up to it, please keep us posted on your results.
posted by Lycaon_pictus at 6:45 PM on December 19, 2017 [1 favorite]

Hi, former bartonella victim here. It very hard to get rid of and often runs with other crap that ticks carry, and that can also result in lymph node weirdness.
posted by twoplussix at 7:33 PM on December 19, 2017 [1 favorite]

Another vote for going through with the CT. Early January will be here before we know it, but you can at least go on your trip with the peace of mind that you’ve already got the wheels in motion if it turns out to be A Thing. With weird mystery symptoms like this, I think it always helps to chip away a little bit at the mystery, even if actually solving it will require more chipping.

Safe travels and best wishes for a boring but conclusive diagnostic explanation!
posted by armeowda at 11:10 PM on December 19, 2017 [1 favorite]

I'd go with option 1 - I strongly suspect that you won't need another CT scan.
posted by machine at 6:55 AM on December 20, 2017 [1 favorite]

Response by poster: agh okay rolling the dice here with CT today, appointment with surgeon on 12 january (which was his earliest availability anyhow, so hey). they did test for cytomegalovirus and epstein-barr and i think pretty much everything else they could think of, all of which came up negative. so it's probably not mono but instead *something* weird (though very possibly benign-and-weird).

thank you for the hand-holding!

(fingers crossed that my insurance plan *actually did* pre-authorise this, which is always a crap shoot...)
posted by halation at 8:33 AM on December 20, 2017 [3 favorites]