Hi, what are the sizes of the largest nodes? Have they been growing?
There is risk to a surgical biopsy, so I'd want to know that they have ruled out infectious and/or any other causes.
If it's only a needle biopsy, then there is much less to fear.
"video endoscopy biopsy" That seems like a very good idea. Not much risk, yet they can get actual cells to analyze in the lab.
25mm is not so large that one automatically thinks it is cancer. So they are looking to rule out a GI cancer that spread to nodes, and to also rule out a MALT lymphoma which begins in the GI tract.
There are many people who have what you have and it turns out to be not-cancer. (Is there tuberculosis where you are at?) Yet you also would want to get the biopsy soon and not wait, in case it is something bad like a cancer.
Was your CEA test in the normal range? I presume so, else you would have mentioned that.
Unfortunately, it's going to be a scary time. However, since cancer is not the most likely explanation, you can look at the upcoming tests as the way to rule out cancer. Then you can go on to finding out what the real cause is.
For the PET scan, you'd want to see that the nodes do not "light up" very brightly, which would indicate that they are therefore not very active. Then you can relax.
However, even if the nodes do light up brightly, that still does not automatically mean that there is a cancer, because ordinary inflammation by itself can make the nodes active.
Overall, since your doctors don't know what is causing the enlarged nodes, they have to proceed to rule out the most dangerous cause before proceeding.
I think that's the good decision. Let me know how it turns out.
One other thing: they found only reactive lymphocytes in your intestinal lining biopsy, not cancer - so that's even more reason to think that your inner nodes are also reacting to something (and are not-cancer). Good luck!
That's good news for you, AbdMogra. Congratulations.
I had mentioned TB early on to you because TB can result in many enlarged nodes such as you have and it can look like lymphoma. On the other hand, TB usually starts in the lungs -- but your problem apparently started in your midsection. So, if what you do have is TB then you have an unusual style of it, an "atypical case". It is unusual to have TB in the gut, for example.
TB is what seems most likely at this point. The treatment is likely to be at least 6 months of antibiotics.
If you have been drinking unpasteurized milk, then the TB could have gotten in your gut that way. You should tell the docs that, if it is true. That's can explain everything.
Or it's possible, but much less likely, that you have some other infection that behaves like TB. Or it's still possible, but much less likely, that you have some very unusual immune dysfunction without an actual infection.
The node near the lungs needs or be checked for cancer, but you can see that as a formality. Just get it out of the way. When you say "lungs lesion biopsy", do you mean there is a spot right on the lung now, seen on the PET scan? The TB can be spreading to there.
I don't know why they haven't been doing the other available TB tests on you.
You are hopefully feeling much better that they have not found any lymphoma. If and when you start antibiotics, then hopefully they will do another scan after 1 or 2 months, and you will be very relieved to see the nodes getting much smaller. Best wishes to you.
Since no cancer was found in the intestines or in the nodes, it's reasonable to assume that the lung spot is also not-cancer.
Have your doctors said to you that they have tested for and ruled out sarcoidosis? Like TB, that usually starts in the lungs and can spread elsewhere, such as to lymph nodes. But there are *unusual* cases where it can start in the midsection and spread eventually to the lungs.
What you have is very unusual, or else they would have found the diagnosis by now. So they have to look for causes that are very unlikely. When they get the biopsy sample from the lung spot, you should ask if they intend to test for sarcoidsosis.
Or maybe it is an infection, besides TB, that started in the gut and can spread to the lungs. I'm guessing that there are probably not many infections that can do that.
Sarcoidosis, by the way, is not an infection. There is no bacteria, fungus, virus or parasite involved. It's a mystery immune reaction.
Short answers: Yes, I would want a 2nd opinion. Treatment? That might depend on the subtype of DLBCL, especially as your experiences with testing have been so unusual.
I'm very sorry to hear this news. It's very surprising at this point, too, after all you've been through.
It's well known that a needle biopsy can miss, just by chance, on collecting the bad cells. But you had a whole seven that missed. Plus the snip samples from the endoscopy. But there's still a small chance that those areas don't have lymphoma, and are merely inflamed as a downstream effect of the lymphoma.
Or it's possible that some infection or immune system condition led to lots of inflammation all around. Inflammation predisposes to cancer. E.g., celiac disease in the gut (from wheat gluten) leads to a higher probability of intestinal lymphoma.
I'm mentioning these things because they might affect your prognosis. Things are probably somewhat better for you if all those enlarged nodes somehow really don't have DLBCL in them.
A second opinion? It would be very rare to have a 'false positive' from a resectional biopsy, saying there is lymphoma when there really isn't. However, given the history of them finding not-cancer time after time, it still seems worth it to have a second opinion on the lung biopsy sample. But the only way I can think of that their finding of lymphoma is incorrect... is if there was some mixup at the lab.
However, it is possible for it to be a different type of lymphoma, but mistakenly thought to be DLBCL. That is exactly what happened to my father; but on further, more complicated testing it turned out to be instead the blastic type of Mantle Cell Lymphoma. However, the treatment might turn out to be the same for you anyway, even if it is a different type.
The lung spot might not be the original (primary) spot of the lymphoma. If it were the original spot, you'd expect it to have gotten much bigger by the time it affected all those nodes and the gut. So much of this is mysterious in your case. But I don't know that matters anyway, because treatment might be the same regardless.
The good news about treatment is that you have a good chance for a complete remission, which is like a cure. Treatment can vary depending on the *subtype* of DLBCL. Also, in general, the most aggressive types of cancers have the best cure rate, because aggressive cells are easier to kill off. Since there is not much discussion of treatments here, so you will probably want to find an active forum that is about treatment. It can be good to also compare experiences with other patients as you go along. (If it's not too much trouble, please let me know how the second opinion on the biopsy turns out.)
Very best wishes to you. It can all turn out well for you in the end.
One last thing. It seems so mysterious how the lymph node near the lung has DLBCL, yet DLBCL was not found anywhere else. Was that a resectional biopsy (where they go in with surgery to remove an entire node)? If you have had only needle biopsies, and never a resectional biopsy, it might be a good idea to have a resectional biopsy as that might give some clues as to what else was going on in the other nodes. That's just a thought. It won't negate the pathologist having found lymphoma. But it could affect the treatment decision. Good luck.
Clarifying: the biopsy shows the germinal center type, not ABC type, but I don't know if there are further subtypes.
It's important to know that when you hear of a patient with a blood cancer who is killed by the chemo, that it is almost always because of the extremely severe type of chemo treatment called a "stem cell transplant". There's no reason to even think of you having that at this point, so let's set that aside.
I think you should begin treatment and see how it goes. You might actually feel very little bad effects at the beginning. Maybe even no hair loss at first. Then they can do another PET in a few weeks to see if the treatment is reducing any nodes or not. You can choose to stop at any time.
That is standard, average thinking. But you are not standard and average, so that opens up the possibility for a lot of thought.
So let's look at being classified as Stage 4, which basically means "lymphoma in lots of different places". If I understand correctly, you only have confirmed DLBCL in that one node near the lung. The other enlarged nodes can possibly be just from associated inflammation. So why are you classified as stage 4? If you are not really stage 4, then your chances are much better. This is why I keep returning to the fact that we don't know what is in all those enlarged nodes.
As for radiation, my purely personal opinion is to avoid that unless it's absolutely necessary, because it's so destructive.
Then there is the matter of: what type of chemo? The standard is called R-CHOP. The R in it is for Rituxan, which is a newer and very very mild treatment given by IV. It's meant to get your own immune system cells to kill the B cells. You might not feel anything from that, maybe just a little chills or reddening of the skin for an hour or so.
The C, H and O in it are types of old-fashioned chemo meant to poison the lymphoma cells. They are not mild.
Then there are other types of old-fashioned poison chemo. Different types are chosen according to what subtype of DLBCL is there.
(Btw, I had also written to you a Private Message.)
Have they done gene testing on your biopsy sample? I'd want to eliminate "Primary mediastinal large B cell lymphoma" which looks like DLBCL under the microscope, but is different when they do the complicated gene testing.
Another thing, my friend, is that you can think about taking some things along with the chemo in hopes of increasing the anti-cancer power. This is not just some crazy "alternative" thing, there are some studies done on this. Two that come to mind are turmeric and melatonin. They might also reduce somewhat the bad side effects of the chemo.
Of course, you would have to get your doctors to approve of anything. Most doctors probably don't believe in it, but good ones won't object if you want to try. I can look into it more if you like.