Friday, March 14, 2014

Lupus lymph node - a biopsy fire-drill

A little over a week ago, I recounted the details of my most recent doctor's appointment. To my relief, he put me on CellCept, changed up my prednisone, and altered my plaquenil. It was a busy appointment with a lot of changes...but all moves in the right direction. There was another aspect of the appointment that I haven't blogged about yet, and that was a lymph node biopsy that I was undergoing a few days later.

As many of you know, swollen lymph nodes can be a common symptom of lupus. In fact, when I'm in a flare, my lymph nodes almost always swell. Sometimes, that's one of the first signs that I'm getting sick. I'm never overly concerned when they do swell, but I do take note, and always bring it to the attention of my rheumatologist. And that's just what I did last September, at the start of this flare. The lymph nodes under both armpits were swollen, and my rheumatologist concluded that indeed it was something systemic because it was under both arms, so I wasn't to worry, given my current state of active disease. (Please consult your doctor for your own personal diagnosis.)

The fall came and went, and so did my swollen nodes. But around New Year's, I noticed that one and only one node in one armpit returned swollen. I didn't think much of it, but planned on telling my rheumatologist when I saw him again in about 2 1/2 months. But the node kept getting larger, and I had no other swollen nodes anywhere, which is kind of odd for me. After about 5 weeks of watching this swollen node grow, and still 6-8 weeks away from my scheduled rheumy appointment, I made a next day appointment with my primary care physician. She concluded that that, indeed, the node was probably lupus-induced, but she thought I should have an ultrasound just in case. I agreed.

I went for the ultrasound, and as the sonographer took her first shot of my armpit, she immediately said, "Wow! Have you been sick or something?" I guess she saw multiple enlarged nodes, and they took her by surprise. (In my book, the multiple swellings were mostly good news, because that meant my one troublesome guy wasn't some weird aberration, but the results were still sent off for evaluation.) I heard from my PCP a week later, who asked me to schedule an appointment with a general surgeon to have my results evaluated.

I did that, and in the meantime, several other swollen nodes popped up - littered around the back of my neck and ears. (Again, good news to me, this being one of the first and only times that I wanted signs of more lupus symptom activity to surface!) Once at the surgeon's office, he did a physical exam, and confirmed that there were even more swollen nodes under my other armpit. While he was fairly confident that all of the nodes were enlarged due to lupus, he still wanted a biopsy to make sure. He said given my use of heavy immunosuppression like Cellcept in the past (his words, not mine), and because I was about to start another round of Methotrexate or the like (turned out to be CellCept, as you know), he thought it was a good idea to be sure there wasn't anything abnormal at play. I pushed him a bit, asking if a case could be made to by-pass the biopsy, but he said in this situation, it was best to move forward. (My rheumatologist agreed, although he, too, was fairly certain we were fine.)

So - I went for a biopsy. It was my first biopsy ever, which made it a bit daunting, but still, I was 90% sure we were still just dealing with lupus. As you can imagine, though, my family and I wanted to be 100% sure. We waited a week after the biopsy before returning to the surgeon. And thankfully, he confirmed that, indeed, there was no sign of tumor, cancer, or lymphoma at all. Hooray! After I gave a big sigh of relief, he wanted me to be sure to monitor my swellings. If my flare subsides, and the nodes are still swollen, he might want to see me. And if additional nodes continue to swell, he may want to see me.

But it's good news in the Gorman household for now!

As always, please consult your own physician before concluding how your own swollen nodes might pertain to your lupus disease activity. And if they ARE swollen, and you haven't told your doctor, make sure you bring it to his attention!


Carmen Metodiev said...

That's good news that it wasn't cancer!!

Sara Gorman said...

You're telling me! I was so relieved...never been so happy to have lupus (and just lupus) in my life! Thx for commenting.

Anonymous said...

So happy for you! Can't imagine the level of stress! And, the experts tell us to avoid stress - but sometimes it catches us.

Haven't been in touch for a long time - good to touch base with you - especially to be thankful with you.

Sara Gorman said...

Thank you!! Hope you're well!

Heather said...

I just had an Ultrasound in which my lymph nodes were found to be inflamed. Now I need to get a biopsy. I'm absolutely terrified! How did you cope with the fear of "what if" rather than stressing out over it and causing a flare? For all I know, I may be in a state of constant flare. I'm always tired, my joints get worse every time I see the Dr., my skin gets brown spots on it whenever it hits the sun (Even my hands now from driving), I constantly get cold chills, hair falls out, and on and on. I was never really fully educated about SLE. I had been told I had Disco I'd Lupus, and thst sufficed me until now. So what did you do to endure the wait?
~ Nancy

Sara Gorman said...

Sorry for the delay. I actually thought of a previous post immediately when I read your comment, but forgot to post it here. The waiting game is the worst -- especially when you don't feel well. It's so hard to keep yourself together! Here are some tips :

I wish you well -take care! Sara

Alick Dolly said...
This comment has been removed by a blog administrator.
Anonymous said...

Hello, I'm so happy for you that it was not Cancer. I was wondering if your glands were painful? I thought my pits were bruised, but after a week I felt a 1 inch lump in one armpit and a pea size in the other but they are really painful. My Dr has done three tests now an thinks I may have Lupus. Thank you for you're time.

Sara Gorman said...

My recollection is that the swollen nodes were not painful, just bothersome. (Although after a spa treatment, i do remember them being quite sore.) Of course, as you continue down the Lupus road, you will find that lupus symptoms can present differently for people, even down to whether something is swollen and hurts, just hurts, or is just swollen. :[ i'm glad you're working with your doctor closely. Thats the best plan of attack. Keep us posted - and hang in there!