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!


Unknown 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
Unknown 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!
Anonymous said…
Thanks so much for sharing! My husband and I are going through this right now. He was diagnosed last August and we have been on a roller coaster ride. Low platelet counts and visits to the oncologist, bone marrow biopsy that came back negative, thank the Lord, Body is producing but Lupus is, enlarged lymph nodes and suggested biopsy for Lymphoma. I'm betting its the Lupus too. Everything that goes wrong seems to tie back to the Lupus.
Anonymous said…
My lymph nodes swoll under my arms for over 5 years. Had the breast cancer screening and ultrasounds on the lumps that come back negative for cancer the past two years. I don't have a regular doctor my lupus because it cost too much money to keep going to testing but three of the five Drs I Went to believe I have SLE. Been having low grade fevers and breathing issues as well as pain and fatigue to tugs and pulls kinds of pains all over lately.
Sara Gorman said…
Anonymous - Indeed, it ALWAYS seems to be lupus! I wish you and your husband luck as you navigate the biopsy process. Here's hoping it's just a fire drill for him, too! Take care!
Sara Gorman said…
Anonymous - I know it can cost a bundle, but it sounds like it's time to see a doctor about those symptoms! To save time (which usually equals money!), i would suggest making a list of the symptoms you listed above, as well as any others, and make a note of how long you've experienced them. Make an appt, and take the list with you. I'm hopeful the puzzle pieces start to add up so you can get the treatment you need! Take care!
Anonymous said…
Hello all I found reading this blog very helpful. I was diagnosed with Lupus on September 2015.
I suffer most from severe joint pain and was practically debilitated before seeing a rheumatologist.
He also diagnosed me with Sjogren's and Hashimoto's thyroid disease. Of course this was all new
to me but it was a relief to get answers. Although hydroxychloroquine helps 90%, I still suffer from
pain or illness on a regular basis.

A few week ago I started feeling breast tenderness and pain. Not thinking anything of it, I let it go. Now almost
a month later pain persists and spread to the lympnode under both arms. Now I contacted my rheumatologist
asking them if these kind of symptoms were connected to my desease's. They recommended me to see my PCP.
I saw my primary and they recommend lab work but also gave me a breast examination and confirmed the pea like
bumps under both armpits. I was put on antibiotics and awaiting results from a Mammo as I instantly freaked out
thinking of breast cancer. I'm happy to see that other people with Lupus have had the same issues with this illness.
Sara Gorman said…
Going for my first-ever mammogram this week, and currently "keeping tabs" on a pea-like node under my arm too. Sympathizing with you from afar! The wait is the worst, but being proactive like you are is the best you can do. Hope the pain subsides, and the antibiotic does the trick. Keep us posted. Thx for sharing!
SolleJourney said…
After an underlying question of Lupus over 20 years it is
at a different level the past 2 years. My lymph nodes swelled
And I got really sick with fever, fatigue, and had a tooth extracted
And the infection seemed to go into the jaw bone and made lymph nodes worse. (July 26)
I am very intuitive because of energy healing and had pain
In my side at spleen. I kept going which is what I have always done meaning
Just push through. I was at my sisters and was taking something downstairs
And next thing I knew I missed bottom three steps and was hanging by left armpit
In a squat position. (Oct 22) Was walking slow and had no idea how that happened! I have had Lumbar stenosis surgery Nov. 2007 and. Cervical fusion at C5,6,7 April 2008 and had pushed through that for over 10 years giving up things.
So knowing I am no longer going to bounce back at 53 like I did at even 33 I waited until
Dec 30th to get it checked and X-ray shows nothing which is normal. Then we started a nerve conduction and PT.
I did not want surgery again but massage, acupuncture, and Pat was not helping. Three epidural
With the third being unsuccesssful as he he did it from angle in neck and unfortunately hit lymph
Node. That was a big flag. So, we went on vacation to see our kids and I still had horrible
Fatigue but constant pain will do that. I knew by then with definitive CT scan we had enlarged lymph
Nodes and chipped bone with herniated disc. I came back from our trip with horrible
Gut issues and could not keep anything in my stomach. No vomiting just the other end.
I had an FNA biopsy scheduled for Lymph mode and just took extra pants with me (the call you do not want to get especially on vacation) and referral to Oncologist with full It was suspicious for lymphoma. Next step was to have ENT remove it and It got sent to Mayo
And was BENIGN .. Praise God! I had a cyst in jaw 11 years prior with runners and same scenario but benign. I never believed I had
Lymphoma. It took three weeks to get an answer which was hard because no matter what hearing it from the doctor
Is a huge relief. Once cleared we moved on to the cervical fusion repair five weeks after lymph nodes removal.
Went great for both. Then ten weeks post surgery an infection came out at both ends of incision so two rounds of antibiotics.
Still did PT and pain in left arm. Another lymph node under left arm popped up and did mammogram
And cleared and now gone. But still fighting fatigue and pacing myself.
Also ended up with stress test for chest pain and beware
Function great so just inflammation in heart and lungs.
I am sure the anemia has something to do with fatigue. Fought that my entire
Life as I almost died at 3 months from it. It was a battle
Entire life. This journey has been interesting and took many years to
Diagnose but five years ago I I really dug into the Natural side and all Specialists are
Supportive and blown away with results. I always try to look at the positive
And one day at a time! There is hope and a good blend between natural and medical
If you are fortunate enough to surround yourself with a good team. So dealing with Anemia, Hypothyroidism, Asthma,
And now Lupus but thankful to get up every day and help others.

Sara Gorman said…
Solle Journey - Thanks so much for sharing your story. So much to relate to and learn from in your comment! I, too, have found that chronic Anemia is something that really needs to be monitored. I always feel so bad when I'm anemic - the fatigue is unbearable, and i feel like all systems are failing. :( Crazy what a little iron can do...and staying vigilant about keeping it in check and staying aware of how i'm feeling before it gets to that terrible depleted feeling. Thx again for sharing!
98387lupie said…
Sara how did your mammo turn out? Just had one this week waiting for results. Swollen lymph nodes all over too. Doc looking for lymphoma but hoping it's a lupus fire drill for me too. Cat scan/ ultrasounds scheduled for next week.
Sara Gorman said…
98387lupie - Thx so much for asking! 1st mammo came back with concerns - but i kind of expected that, given it was my first, there was no baseline, and given my mom's and sister's track records with concerning mammos. :) Went for a repeat, and radiologist recommended a repeat in 6 mos. But my gyn asked for a 2nd opinion from a breast surgeon. Good news - breast surgeon agrees 6 mos repeat is fine. Nothing to worry about. Just genetically hard-to-read body parts! Doctors always say it's nothing until it's I'm sticking with that positive outlook! And you??
Anonymous said…
I have been having a congested when I take deep breaths went to the doctor who referred me to a specialist suspecting it was a lung disease after an xray. The specialist did a CT scan and recommended a lung biopsy and blood tests which I did last Tuesday. Results came out and he says it's SLE. He referred me to a rheumatologist. Whats next for me because I'm so enxious and scared.
Unknown said…
Hi. I'm new to lupus. Diagnosed 3 weeks ago. At age 15 I was diagnosed with JRA. Now I'm 50 and told I am NEGATIVE for that and that I am positive for Lupus. I don't have insurance and need to see a rheumatologist. Any help you can provide will be greatly appreciated...anyone! I'm so stressed out and hurt all the time! Have a mammogram next month and a pap. I have severe headaches and I'm sore under left armpit today. I'm in process to file for disability. Denied for Medicaid.can't see a doctor without insurance and living on husbands SSI is hard!
I stumbled upon your blog this morning and felt compelled to comment. Don't like any of the other blogs at all! Thanks for your input.
Sara Gorman said…
Anonymous - I'm sure you ARE feeling completely overwhelmed right now. Chest pain can be such a worrisome symptom. I remember it all too well! The good news is that you are taking steps to begin the treatment you need for SLE. Just think - you're about to see the exact doctor who can treat your exact symptoms for this exact disease! You're on the right track...and I'm hopeful that once you start treatment, that chest pain will subside and you'll be able to breath deeply again (in more ways than one.) Just be sure to tell the rheumy all that you've been experiencing - perhaps make a few notes before you go in so you have your facts in front of you: how long you've had the chest pain, any other symptoms, etc. Even if you think a symptom is insignificant or if you attributed it to something else - aches, pain, rashes, hair loss - be sure to include it in your notes. Try and give the doctor as much as you can to go on. The doctor may treat your chest pain aggressively (with various meds and/or inhalers, etc.), but don't be alarmed. Once you get that symptom managed, you and your doctor can focus on the longer-term care. Be sure to check back after your rheumy appt. Would love to hear how it goes, and answer any questions you might have.Take care!
Sara Gorman said…
Kelley - What a roller coaster you've been on! And it sounds as if you've already paid your roller-coaster dues years ago with the JRA diagnosis. :0 Sorry to hear about the turn of events - but I'm hopeful with a lupus diagnosis, you'll be able to get the specific treatment you need to address those symptoms. The Lupus Foundation of America has a great site for all things Lupus - I've included the link to their Financial Assistance healthcare page. I hope there are some avenues to explore:
If you click on the first HRSA Health Centers, you can type in your zip code, and find out if there is a center close to you. I hope that helps - and best of luck. I hope you can get in to see someone soon!
Unknown said…
Thank you for the info Sara! I'll look in to it!
Unknown said…
I’ve had lupus since 1997 and I’m stable. Doctor recently recommended to get Hodgkin Lymphoma biopsy done. I’m a bit worried of complications after surgery due to the removal of a lymph node. Since lupus is an immune issue, how will it affect the proper drainage? Thank you
Sara Gorman said…
Unknown - Good question! I would definitely ask your doctor about what to expect, and how soon you may start to experience side effects (if any.) Drainage would be one of my questions, too. I would want to know what signs to watch for, and any precautions I can take. A friend who has had nodes removed finds compression arm stockings helpful to wear during exercise. So you could always ask if that is pertinent to your situation, too! Best of luck and thanks for sharing.
Unknown said…

Just got a call that my rheumatologist wants me to officially see a hematologist for my swollen lymph nodes. Diagnosed with lupus and sjogrens in 2016. How painful is a lymph node biopsy? I have this feeling that they will want me to do that. Been having swollen lymph nodes near my armpits for some time now. They come and go. Definitely hate the waiting game too but comforted that other people have issues with their lymph nodes.


Sara Gorman said…
Thanks for stopping by! I can only speak for myself, but I had little to no pain following the procedure. I had expected it to be quite a "thing", so very relieved when it wasn't at all! :) Good luck, either way. I think seeing a specialist is the wsy to go!

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