hubby waiting for a diagnosis? Incidentally found Multiple enlarged lymph nodes in abdomen
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Hello Whitepony.
I can not express how much I was impressed how you seek answers for your SO. I have read this thread in a heartbeat because I wanted to gather all the information as it might be helpful to my case. I also have enlarged mesentery nodes, similar to your husband's. I am 40 years old, quit smoking 10 years ago, and maintain a fit and healthy lifestyle.It started last year with losing significant amount of weight and abdominal pain. I had two CTs, one w/contrast and it shows the enlarged mesentery lymph nodes. I am in wait and watch as well, however I believe I need to get the next one soon. (I had another ct scan for my lungs due to dizziness on last December so I was advised to wait another six months for the abdominal one which has higher radiation.)
My question is how the doctor ordered Flow cytometry test based on the imaging or blood test, if all the other things looked fine? If I missed that detail in the thread, I apologize.
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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.
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hello Poobah,
I’m sorry you’re going through this. I totally understan how frustrating it can be to not have a definite answer. In our case, we chose to (at least try to) live with the uncertainty.
In our case the lymphoma was discivered incidentally. My husband had multiple blood tests, full blood count, liver functions, antibodies, etc which all came back clean. And he didn’t have any symptoms so we were told it’s probably nothing serious ( the nodes were around 1,3 cm at most) , and to come again in a couple of months. Since biopsy was deemed risky, we asked the doctor which additional test we could have and then he suggested flow cytometry, which came with abnormal results.
Your case is a bit different because some kf your complaints sound like b-symptoms, although it’s always hard to tell whether they’re caused by a disease of the lymphatic system or not.
We’re not living in the US so i can’t tell what when a flow cutometry is indicated but in our case we had it done without paying any extra costs.Although my husband is really healthy at the moment (thank God!), he does have an unspecified kind of b-cell lymphoma in his patient acts (the doctor told us that iw would facilitate his access to scans etc) , which makes him impossible to get a life insurance…
The best thing about indolent lymphoma is that you can live with it for many years and even decades, and there’s a new treatment or drug coming out almost every 3-4 months. So even if you get a diagnosis there are many reasons to be optimistic.
I hope everything works out well for you!
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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.
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Hi Poobah
Let me try to answer without writing too much! Basically I suffered bad fatigue and back aches. I was a marketing exec fo international and travelled almost continuously . I kept going to the doctor and they kept finding nothing. My blood work was normal and no palpable nodes. Finally my doc told me he could find nothing wrong and suggested counseling. One week later my other doctor, an orthopedist, ordered an MRI of my back which showed up something in my mesentary. The doctor dismissed it as probably nothing. His PA followed me into the hallway and suggested that I see an oncologist which I did. The onc ordered a PET scan and some other tests. Then after the biopsy from hell I had a BMB - both of which tested positive for lymphoma at Stage IV. So briefly my main symptoms were fatigue and back pain.
So I am very skeptical of doctors and get at least two opinions on everything.
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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.
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Hey!
I have been through this journey for many years starting in 2016 when I started to have some major panic attacks. What was initially reviewed as a fatty liver, an ultrasound and MRI detected enlarged lymph nodes in my abdomen. Went from an gastroenterologist to an oncologist and from a PET scan to collecting Bone Marrow (ouch) to rule out Stage 4 lymphoma. Decided to go for a laparoscopy to have a biopsy done from the mesentery area. Diagnosed with Stage 3 FL (nodes from neck to pelvis) and plan was to watch and wait, up until last year where I was admitted to the hospital for stomach pain. CT scan showed one of the nodes wrapping around the aorta - overall the lymph nodes were growing faster so the decision of the oncologist/hematologist was to start treatment with Rituxan and Bendamustine. I was referred to a special partnership with my employer and a major cancer center, and this place received my medical records right away. Saw a Lymphoma specialist within 2 days and they had me go through a PET scan which showed spreading to the bone marrow. Fortunately they offered an alternative treatment as they have been running a clinical trial for an approved immunotherapy drug that has been used with double relapsed FL patients with success. I was accepted into the trial and was able to work through the entire course of treatment, including an initial and post treatment bone marrow aspiration, multiple blood draws, CT and Pet Scans. Honestly, if I had to do this over I would have been taking a leave of absence this entire time. I am glad to say that there was a complete response and three month PET and CT scan post remission has been clear! Right now, it really has taken a toll physically and mentally - balancing this along with a job that requires 60+ hour weeks, and a family with multiple kids, but glad that it’s all over for the time being.
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Dear SB08619,
Having a cancer of any type, especially at a young age sucks, but i’m glad to hear you are now in remission and that immunotherapy wasn’t super hard on your body. Were you treated with mosunetuzumab? I’ve read many positive things about that drug.
I hope you’ll continue to stay in remission!
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It seems that mosunetuzumab, at least in the USA, is only administered for relapsed FL after two other routines have been administered. It carries a major risk of CRS for some patients. Whitepony, having cancer does suck regardless of your age. 40 is young but the average age for FL diagnosis is 64. Without a biopsy there is no way to know for sure if your husband even has lymphoma or what type. Most any type of lymphoma, not just FL, can be indolent. Best of luck and seriously consider a biopsy if there is a palpable node! “Know thine enemy as thy self”.
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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.
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