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Is it Lymphoma?
I've had very large lymph nodes that I thought nothing about until I discovered a large node in my groin. It measures 4 cm. The ones in my neck are 1.1 cm near my thyroid, and the ones in my armpits haven't been measured yet, but they feel big, not hard but kind of squishy. I've been run down for over a year. I have night sweats and low-grade fevers frequently. I see a surgeon tomorrow to consult with about a biopsy in my groin. I'm a 56 year old female that is feeling more and more exhausted everyday. Thanks.
COMMUNITY LEADER
"and occasional tangible body macrophages and plasma cells"
that's okay because they are only occasional, so plasma cells are not the dominant cell as in Castleman's.
But if we wanted to get more complicated, we can notice the word "generally" in the cited paper: "Pathologically, it is generally of the plasma cell variant." So a node isn't always full of plasma cells in Castleman's - there is another type of Castleman's without all the plasma cells. Also, hepatosplenomegaly is not always present.
Castleman's isn't fully understood anyway. The excisional biopsy is necessary to distinguish.
The worst outcomes in Castleman's aren't necessarily the most probable outcomes. Castleman's is not even necessarily the most likely diagnosis. But it needs to be excluded.
Also, you have the pathologist's judgment of "mostly consistent with benign...". A judgment by a pathologist should always carry a lot of weight. However, it does say "mostly"' so a lymphoma is not 100% excluded but I'd say that the odds are still well in your favor on that.
Unfortunately, until the excisional biopsy everything has to do with odds and nothing is definite.
that's okay because they are only occasional, so plasma cells are not the dominant cell as in Castleman's.
But if we wanted to get more complicated, we can notice the word "generally" in the cited paper: "Pathologically, it is generally of the plasma cell variant." So a node isn't always full of plasma cells in Castleman's - there is another type of Castleman's without all the plasma cells. Also, hepatosplenomegaly is not always present.
Castleman's isn't fully understood anyway. The excisional biopsy is necessary to distinguish.
The worst outcomes in Castleman's aren't necessarily the most probable outcomes. Castleman's is not even necessarily the most likely diagnosis. But it needs to be excluded.
Also, you have the pathologist's judgment of "mostly consistent with benign...". A judgment by a pathologist should always carry a lot of weight. However, it does say "mostly"' so a lymphoma is not 100% excluded but I'd say that the odds are still well in your favor on that.
Unfortunately, until the excisional biopsy everything has to do with odds and nothing is definite.
1 Comments
Thank you, Ken. Happy New Year!
I have an appointment with surgical oncologist on 1/6. Will have an excisional biopsy.
I have an appointment with surgical oncologist on 1/6. Will have an excisional biopsy.
COMMUNITY LEADER
"FNA had high rates of false negative results. Do you think that might be the case here?"
No, because they did find things that are not typical - just not being lymphoma. They found multiplying lymphocytes, but not "monomorphous" ones which is what cancer would be. They also found stainable macrophages, which apparently are found in reactive (not-cancer) nodes.
"Castleman's disease"
Yes, you'd certainly want to make sure that has been ruled out. But they didn't find plasma cells, which are derived from but look different from lymphocytes. Also, that's why I'd asked about hepatosplenomegaly, which you say you don't have. But ask them for sure anyway.
"I am going to have them remove the entire node in my neck"
that sounds ideal to me
"...as it is pushing on my breathing tube."
that seems like all the justification they need to order the surgery. Also, examining a whole node will give clues that seeing only isolated cells doesn't provide.
Everything seems well on track for you. Let me know what happens.
No, because they did find things that are not typical - just not being lymphoma. They found multiplying lymphocytes, but not "monomorphous" ones which is what cancer would be. They also found stainable macrophages, which apparently are found in reactive (not-cancer) nodes.
"Castleman's disease"
Yes, you'd certainly want to make sure that has been ruled out. But they didn't find plasma cells, which are derived from but look different from lymphocytes. Also, that's why I'd asked about hepatosplenomegaly, which you say you don't have. But ask them for sure anyway.
"I am going to have them remove the entire node in my neck"
that sounds ideal to me
"...as it is pushing on my breathing tube."
that seems like all the justification they need to order the surgery. Also, examining a whole node will give clues that seeing only isolated cells doesn't provide.
Everything seems well on track for you. Let me know what happens.
1 Comments
"Both lymph nodes showed a polymorphous lymphoid population with scattered and occasional tangible body macrophages and plasma cells. These findings are mostly consistent with benign follicular lymphoid hyperplasia."
This is the exact report from pathologist.
This is the exact report from pathologist.
COMMUNITY LEADER
"polymorphous lymphoid hyperplasia with scattered tingeable macrophages"
Hi, that's very good news for you, since both of those point to you not having lymphoma. What you have *looks* very much like lymphoma, especially with the nodes being huge. But it isn't lymphoma, so it can be said to be mimicking lymphoma.
So that leaves us wondering what you do have, with unfortunately possibly a long process of diagnosis still ahead of you. But your future seems much better than having lymphoma.
Maybe Rosai-Dorfman Disease, maybe granuloma.
http://theoncologist.alphamedpress.org/content/9/4/406.full
Is your liver or spleen enlarged or tender?
Hi, that's very good news for you, since both of those point to you not having lymphoma. What you have *looks* very much like lymphoma, especially with the nodes being huge. But it isn't lymphoma, so it can be said to be mimicking lymphoma.
So that leaves us wondering what you do have, with unfortunately possibly a long process of diagnosis still ahead of you. But your future seems much better than having lymphoma.
Maybe Rosai-Dorfman Disease, maybe granuloma.
http://theoncologist.alphamedpress.org/content/9/4/406.full
Is your liver or spleen enlarged or tender?
2 Comments
You told me earlier that FNA had high rates of false negative results. Do you think that might be the case here? I also researched Castleman's disease. That is pretty scary! I am going to have them remove the entire node in my neck as it is pushing on my breathing tube. Thanks again. You are so thoughtful!
no swollen spleen or liver.
I received the results of my FN aspirations on the neck. It said that I have polymorphous lymphoid hyperplasia with scattered tingeable macrophages. What does this mean? My doc is on holiday and no one can answer my this. It appears that both sides of cervical nodes contain this. My groin where there is a 4 cm node wasn't biopsied. Please help. Many thanks!
COMMUNITY LEADER
"in my chest also"
lungs?
"night sweats and low-grade fevers frequently... feeling more and more exhausted everyday"
that is not confined to cancer/lymphoma, it could be immune related
needle biopsies seem better at this point than excisional, unless the 4cm is causing problems from pressing on nerves etc. But be aware of 'false negatives' and the why of that.
"popped up at once"
let me clarify: did they each grow very quickly and then stop growing. They could have had that pattern independently of each other, but still each have the same pattern: quick growth then plateau. Is that what happened?
lungs?
"night sweats and low-grade fevers frequently... feeling more and more exhausted everyday"
that is not confined to cancer/lymphoma, it could be immune related
needle biopsies seem better at this point than excisional, unless the 4cm is causing problems from pressing on nerves etc. But be aware of 'false negatives' and the why of that.
"popped up at once"
let me clarify: did they each grow very quickly and then stop growing. They could have had that pattern independently of each other, but still each have the same pattern: quick growth then plateau. Is that what happened?
2 Comments
I've had all the blood work done and the only thing was very low folate. Do you have NHL? I genuinely appreciate your concern and your thoughtfulness.
It appears that they have been growing larger in my neck and arm pit, and then recently in my groin. I have CT Scan on my neck tomorrow because doc wants to see how many are enlarged.
How does this change things?
1 Comments
Well, the way to proceed is to look at each factor and whether it tends to cancer or to not-cancer. You have both.
So you are not a sure diagnosis either way. For instance, you have been evaluated for the past year and not been diagnosed with cancer. So that's good. But the number of enlarged nodes has increased to where there now has to be a biopsy. This isn't being done to confirm cancer, it's being done to figure out what is going on.
The perhaps biggest tendency to not-cancer is that they don't keep growing. Cancer doesn't aggressively grow and then just decide to stop growing, That'd be very rare.
OTOH, the biggest worry is a node at 4 cm. What can we think of that can make a node so very large yet still be not cancer? I'd think of granulomas. Did your doc mention that word? What about mention of TB or sarcoidosis? Do you live in the Ohio or Mississippi River valleys?
Did you travel ~ Dec 2015?
That's for starters.
So you are not a sure diagnosis either way. For instance, you have been evaluated for the past year and not been diagnosed with cancer. So that's good. But the number of enlarged nodes has increased to where there now has to be a biopsy. This isn't being done to confirm cancer, it's being done to figure out what is going on.
The perhaps biggest tendency to not-cancer is that they don't keep growing. Cancer doesn't aggressively grow and then just decide to stop growing, That'd be very rare.
OTOH, the biggest worry is a node at 4 cm. What can we think of that can make a node so very large yet still be not cancer? I'd think of granulomas. Did your doc mention that word? What about mention of TB or sarcoidosis? Do you live in the Ohio or Mississippi River valleys?
Did you travel ~ Dec 2015?
That's for starters.
COMMUNITY LEADER
This new info changes things more than a little. First and foremost, did the other nodes spring up very quickly and then level off so their size stayed mostly the same. If so that's good.
Secondly, what did the sonogram report of the neck node say?
Yes, keep me updated. This is not cut and dry by any means.
Secondly, what did the sonogram report of the neck node say?
Yes, keep me updated. This is not cut and dry by any means.
2 Comments
In 12/15 I had ultrasound on thyroid because I felt a nodule. It turns out to be a 1.1 cm lymph node. On a cat scan they noted several VI enlarged nodes. Today she palpatated several more in my neck that she wants biopsied, including the 4 cm in groin. They have all been there since 12/15. They have not decreased in size at all. The worst part in the extreme fatigue. I feel like I am dying. But I remain hopeful. It's just that I have no energy to do anything.
I don't believe they popped up at once because the collective results have finally raised my dr.'s attention. You can be straight up honest with me and I won't get freaked out. I have a great support system, and I practice yoga and meditation several times a week. I'm in good spiritual condition, and planning to live my life to the fullest even if it is dire.
I will let you know how it goes when I get my results from the biopsy. Thank you so much!
1 Comments
I just saw the surgeon who is referring me to a pathologist who will do ultrasound guided fine needle biopsies because I have so many large nodes that she wants to have several of them biopsied throughout my body. She mentioned lymphoma several times. She is rushing the procedure so I can get in asap.
COMMUNITY LEADER
Hi, the surgeon will almost certainly want to do the biopsy as soon as possible because of the 4 cm size. That's even more so if it's rounded instead of oval.
The main thing to keep in mind is that there are different kinds of non-Hodgkins Lymphoma. Ironically, the ones that grow the fastest can often be the most curable.
It's still somewhat possible that there is another cause, such as certain viruses or autoimmune conditions. The biopsy is the only way to be 100% sure. I'd ask the surgeon to tell you right after the surgery how things looked to the naked eye. That way you won't have to wait for a followup visit to get an idea of what is found.
Best wishes to you.
The main thing to keep in mind is that there are different kinds of non-Hodgkins Lymphoma. Ironically, the ones that grow the fastest can often be the most curable.
It's still somewhat possible that there is another cause, such as certain viruses or autoimmune conditions. The biopsy is the only way to be 100% sure. I'd ask the surgeon to tell you right after the surgery how things looked to the naked eye. That way you won't have to wait for a followup visit to get an idea of what is found.
Best wishes to you.
1 Comments
Thank you, Ken! I pulled up some medical records from CT scans this past year, and noted that I have them in my chest also. I've had all sorts of blood work done for Autoimmune disease, Hepatitis, HIV, and other viruses. They are all negative. I also live a very low risk lifestyle. These nodes have been huge since 12/15 when the scan showed the nodes in my neck.
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