hubby waiting for a diagnosis? Incidentally found Multiple enlarged lymph nodes in abdomen

Poobah I am certain Whitepony will eventually reply. This forum is pretty dead. I had Stage IV FNHL centered in my mesentery and also in my bone marrow. I have never had palpable nodes. Like you, I lived under the illusion I was healthy - good diet, exercised daily, never smoked, very active and felt well. So my layman's advice, for what it's worth, is don’t worry about the CT scans. That will be the least of your concerns. Also don’t torture yourself asking if you caused it by something you did. As for biopsy I would certainly not recommend a mesentery biopsy. But you do need a biopsy to be 100% sure of what is going on and the proper course of treatment. You may want to talk to your doctor about a BMB. Best of luck and hopefully someone will soon answer your questions about the flow cytometry. However remember that things like flow cytometry, CT scans, PET scans etc. are simply screening tests. The only reliable diagnostic test is a tissue biospy.

Indolent lymphoma is a very treatable disease and there is rapid progress towards an eventual cure. So be positive and see it as a nuisance, not a death sentence. You can expect a full normal lifespan despite fnhl.

Thank you ShadyGuy for your answer! I am so sorry you have been dealing with this. You have my empathy.

I’ll get to know the condition of my mesentery lymph nodes in two months or so. (In California, they did not give an approval for another CT scan w/contrast sooner than six months.) May I ask you about your symptoms? And what led the doctors to look for FNHL?

Thank you.

Poo, I have been on a path similar to Shadys for 15 years now. I believe that getting proper diagnostic results and assistance from insurance companies is.more difficult than either the disease or receiving chemo. I was diagnosed with advanced S III HL only after being rushed to a chest pain center. Later, the cardiologist said my arteries were clean; my chest pain was from nodes pressing upon my heart. And on my escophagus, various veins, lungs, and spleen. I achieved full mission about eight months later, and relapsed 11 years later — again with advanced, bulky, S III disease But thecritical thing is that my CBC/blood panels were NORMAL. And, no doctor has ever been able to feel a node in me to the touch. They cannot explain why. My diagnostic biopsy in 2022 in the right axillary (armpit) was just below the skin, and the size of a tennis ball. Sadly, many patients must fight for the care they are supposedly entitled to.

I would be interested the name of the immunotherapy drug if you care to share it. Thanks.

Hi - Thanks! It was monsunetuzumab! The clinical trial at MSK was focused on untreated patients. There were certain criteria for qualifying and it did require a bone marrow biopsy at the beginning and end. Treatment was eight 3-week cycles via injection into the stomach but the first cycle involved an injection every week. PET/CT scans at the end of cycles 4 and 8. Lab work had to be done before the injection. I think cycle 5 I had a delay of a few days due to a low WBC count and had to take medication to boost that up which caused a lot of joint pain. Had the injections done on Thursday/Friday so that I could continue working. Those Mondays and Tuesdays after were tough as I was tired (definitely crashed in the beginning since they gave me steroids to prevent CRS that would keep me energized with little sleep). Minor side effects though at times, including skin peeling off my hands and feet.

I just want to say thank you to the people of this thread because I like many of you, I’m in this winding path of searching for a diagnosis. I finally had a core needle biopsy of a mesentery lymph node yesterday and am awaiting results. Unfortunately, while I have several large nodes the largest node with calcification (3cm) could not be reached during the biopsy so they had to sample a different node. I’m wondering if I’m still going to be “watch and wait” if this biopsy comes back clear as they couldn’t get to the largest lymph node. While a clear biopsy is great, it’s not definitive in this case? I also wonder if it could be time for a second opinion. I live near Boston so Dana Farber is the obvious choice. As I type this there is clearly the possibility that this other slightly less enlarged lymph node will be positive for something. I’m just trying to mentally prepare myself that my current best case scenario is that I’m still in this quest for a diagnosis….

All of your posts have been extremely helpful as there isn’t much out there on mesentery nodes. I am an otherwise healthy 42 year old female and mom of four. I will say that I have a seven year history of very high crp and esr that no one (immunology, rheumatology) can figure out. This history of inflammation doesn’t give me the warm and fuzzies and my oncologist said “yeah this could be the cause all this time.”

About seven months ago I had a CT scan to look for kidney stones and that was clear except for some enlarged mesentery lymph nodes. Radiologist recommended follow up in 2 months. Follow up showed a “mesentery mass” 3cm and swollen lymph nodes, possibly cancer see oncologist. That will stop you in your tracks. So I see my hematologist as I have historically gotten iron infusions and he is the head of oncology/hematology in a Boston hospital. He ordered CT scans and a PET scan and unfortunately I was a bit under the weather and my PET scan was a bit crazy. I did have up take in my abdominal lymph nodes and chest and a lot in my head and neck (had a head cold). Side note, don’t do a PET scan with head cold. At this point all bloodwork normal accept for crp and esr which is “my norm” but I mean that isn’t normal just because I’ve had it for so long…. It is frustrating to be told “this could just be your weird immune system” as that’s still not a diagnosis of any kind. Two months and a bought of covid later, CT scan showed reduced lymph nodes in head and neck. Chest were smaller and abdomen were the same - several enlarged one 3cm and one 2cm and some others. How many exactly? It doesn’t say. No pain or abdominal symptoms. Side note, colonoscopy and endoscopy clear from 2 years ago.

We decided to go for the biopsy with CT guided needle. This took a while to set up bc I had a concussion from a car accident (when it rains it pours) and bc I wake up during anesthesia so I had to have an anesthesiologist present (he was awesome).

So here we are. It was not ideal bc the large lymph node was not accessible. They got 8 samples but the report said it was difficult as the node was very mobile. So here I am waiting. I hope it’s clear but at the same time the only way to know is the take out the large lymph node and I’m not sure how necessary that is. My oncologist is leaving the practice and I’m wondering if I should see someone at Dana Farber. I’ve read they have more expertise with the mystery crp/esr cases. I just want to say it is so helpful to read other stories. These lymph nodes are very tricky to get to and it puts us in this limbo a lot of people don’t understand. Best of luck to everyone and I will update with my results/plan of action.