Multiple prominent lymph nodes around pancreas, 14 year old boy

[Chickpea77]

We ended up taking my eldest son to emerg for what we thought might be inhalation issues from painting in a classroom all day with no ventilation when he started vomiting the next morning, as we just wanted to be safe. As it happened, our family doctor was working in emerg that day and told us that it was not inhalation. We discussed the fact that he had been vomiting once or twice a month for the past few months without reason and he ordered us an outpatient ultrasound for later in the week to see if there were any issues. Both myself and my youngest son have Celiac Disease and our doctor is very attentive to any stomach issues as there is a hereditary aspect to it. Anyway, later that evening he spiked a fever and ended up having influenza which spread through the house. We missed the initial ultrasound as everyone was sick, but I called and rebooked for a week later. He had the abdominal ultrasound done and the tech kept asking if he had been having any stomach pain, we said no. We had to go back to emerg for results (standard protocol because we were referred through emerg), and when the emerg doctor came in with the results he asked again if my son had been having any stomach pain. He said that the ultrasound was clear for any issues they were looking but that they incidentally found multiple prominent lymph nodes in the peripancreatic region, largest lymp node measuring 2.0 x 1.6 x 0.9 cm. Everything else looked completely normal. No other area had enlarged lymph nodes or swelling of any kind. We were told to repeat the ultrasound in 3 - 4 weeks. I said that I was concerned that it was localized and the doctor said that it could be due to him having the flu the week before, but the fact that they were only around the pancreas has me very frightened. I went and saw my family doctor just to ask questions and he said that it could be due to lymphoma, but that at this point he isn't really concerned and would be comfortable rechecking a few times over 6 months to see if the size of the nodes go down before ordering a biopsy. I know it is not smart to look things up online, but I can't find any reassuring  information. I am so frightened and feeling like I am floating outside of my body.... I just want him to be alright, but if something is wrong I want to know ASAP so that we can do something about it.... Please help.... It seems that influenza wouldn't just cause an issue with those specific lymph nodes.... Any advice would be appreciated....

[Ken_PA]

Congratulations, that's more good news for you. Thanks for letting me know.

Identifying that splenule is probably why this scan took longer. You'd probably never know it was there except for accidentally finding it because of the unrelated symptoms. It shouldn't have any relation to the problem and should be forgotten.

On your next scan visit you should be much more relaxed. It even helps to be familiar with the place to park and how to check in and all that. Plus you know they are expecting it to go down, or at least remain the  same.

If the vomiting and fevers stop, then this will all be remembered as just some strange, unexplained thing that sometimes happens to people.

I hope you finally got some good sleep last night :)

[Chickpea77]

Thank you Ken :)
We went in to see the dr last night and to get a copy of the results, which states that the spleen measures 11 cm which they said is within normal, and that they found a 1.5 cm splenule. It states that the periportal/peripancreatic lymph nodes are probably reactive as they are stable, but that they should be re-evaluated in 3-6 months time to confirm their stability/regression. The dr has set up an ultrasound for the end of August in order to follow up.

[Ken_PA]

Hi, 6 months seems like the standard time to wait. I wouldn't expect any increase in size there. But there might be an increase in the number of nodes elsewhere - or else they might go away on their own - or get somewhat firmer from fibrosis. Fibrosis would take a very long time to go down, as phagocytes deconstruct them one tiny bit at a time.

I'd correlate in a journal any symptoms that occur along with vomiting episodes. That'd be part of an effort to find out what the real probable cause is.

Unfortunately, other than that, there will be lots of waiting. Still, any thoughts of lymphoma should be mostly banished by now. So that's a blessing.

[Chickpea77]

So, we had our repeat ultrasound today and the tech wouldn't say anything. She said we would hear in 3-5 business days, but I would think we would hear sooner if something was wrong, wouldn't we?
This entire situation has turned me into Mother Bear and I have been researching ultrasound films online as if I have a radiology exam coming up. Still though, I couldn't make out anything on the ultrasound. The tech took a lot more stills this time than last, and not only around the one region, which I am guessing means there were more lymph nodes in other places, but that is just me assuming. Now we play the waiting game.... I just hope our family dr takes pity on this anxious mum and calls as soon as he hears.... I will update with results/further follow-ups/procedures when we hear back.
Thanks for listening <3

[Ken_PA]

The plus side is that you should now be less worried that lymphoma is popping out all over. The down side is that the doctor is seeing things only in the standard way, in a non-standard and non-usual case.

In medicine there is the "Law of Parsimony" which states that when two or more symptoms are occurring, you should first assume that they both have the same cause rather than assuming they are unrelated. But when doctors insist on seeing various symptoms as unrelated, that results in a long delay for diagnosis in unusual cases.

My guess is that next week's sono will probably show the abdominal nodes to be the same size as always. Then unfortunately you will be told to wait another 6 weeks or more to do another scan. It will be good to see that  they haven't grown, but then the stress gets prolonged even more.

However, if the neck nodes go down a lot then there's a good chance that the abdominal nodes will be reduced also. That's if the same underlying cause is behind everything.

You need to also take care of yourself some, especially with relaxed resting, or else you won't be any good to your son. Just remember that the theoretical worst that could have happened today was that you'd have been told that the neck nodes are lymphoma, so there is reason to be happy about the visit.

[Chickpea77]

I spoke with the receptionist at the dr's office and she stated that a note was left for me saying that the ultrasound showed no changes and that we are to repeat in 6 months..... does that seem like a really long time to wait? I have scheduled an appointment with the dr for Monday afternoon as I would like to get a copy of the report for my own records. My son still has probably 15 palpable lymph nodes in his neck, one being the size of the tip to first nuckle of my thumb, but they don't seem to be any bigger than last week.... your thoughts?

[Chickpea77]

I spoke with the receptionist at the dr's office and she stated that a note was left for me saying that the ultrasound showed no changes and that we are to repeat in 6 months..... does that seem like a really long time to wait? I have scheduled an appointment with the dr for Monday afternoon as I would like to get a copy of the report for my own records. My son still has probably 15 palpable lymph nodes in his neck, one being the size of the tip to first nuckle of my thumb, but they don't seem to be any bigger than last week.... your thoughts?

[Ken_PA]

Good luck :)  I think you'll like what you find out today.

[Chickpea77]

So, dr said he is not worried about the neck nodes, but that the ones in his stomach are not a normal find. He gave us a script for bloodwork but said to use it at our own discretion. He said that until we do the repeat ultrasound we won't know much, but that we need to give the nodes enough time to go down, so not until next Thursday. I swear I have given myself an ulcer.... so tired and just want answers.

[Chickpea77]

Appointment with family doctor for 4pm this afternoon.... I will keep you posted. Wish us luck!

[Ken_PA]

"You think that I should push for an earlier ultrasound at least for the neck lymph nodes?"

Yes.

"Are you thinking Lymphoma?"
No, but ironically the docs could feel that they have to investigate the neck nodes with ultrasound. Then lymphoma will most likely be ruled out if/when normal "architecture" is seen inside the neck nodes. That especially includes the presence of fatty hilum.

[Ken_PA]

Just to be sure: I'm referring to scanning one or more neck nodes ASAP, not rescanning the internal nodes.

[Chickpea77]

One of them feels a bit bigger than two centimeters, but I don't think they are any larger than when I first noticed them. I will be calling the dr first thing tomorrow to see what he says. You think that I should push for an earlier ultrasound at least for the neck lymph nodes? Are you thinking Lymphoma? Please be open, I need to emotionally prepare for the different possible outcomes of this.... Thank you Ken, I really do appreciate all of your help.

[Ken_PA]

The max size for reactive nodes is roughly 2 cm. I would guess that's about the size of a kidney bean.

The plateauing is what stands out as well as being bean shaped (not round or long and thin). So I think you will get good news from the sono :)  Then it's time to figure out what the real cause is.

I'm glad to be of help, good luck to you and your son.

[Chickpea77]

Thank you Ken!

[Chickpea77]

I am also worried because the lymph nodes are now in his stomach and neck....

[Chickpea77]

Thank you for your quick response! I will call first thing on Monday. You don't think that the fact the nodes on his neck are so large is worrisome? Yes, we are in Canada. Because the ultrasound was done in emerg we luckily get the results right away, but  moving the ultrasound up might not be a possibility. I will definitely let you know how it goes--this is such a great resource, thank you :)

[Ken_PA]

Oh... maybe in Canada you can't get the ultrasound moved up? Well, it's worth a try anyway. The doc wanted to wait to see if the nodes went down, but since more sprang up you should definitely report that ASAP because its also a clue as to the cause.

[Ken_PA]

You should call the doctor's office on Monday and tell his nurse or N.P. about the flareup of more nodes and ask them if they want to get the ultrasound sooner. Sooner is better, now.

Also consider this: his nodes grow quickly to max size and then the size plateaus. Then more nodes follow the same pattern. If this were lymphoma, then they would typically just keep growing and growing and not plateau. So this looks like "reactive" nodes instead.

Let's say that you can get the ultrasound done on Tuesday. Make sure to ask the ultrasound tech  right as it's being done if they can see a "fatty hilum". They're not supposed to talk but some are merciful and do talk. Lymphoma wipes out the fatty hilum, so if a fatty hilum is seen then it's almost certainly not lymphoma.

I believe you will find that it's not lymphoma. That's the reasonable guess, I'm not just saying it to be positive. Let me know how it goes, okay?

[Chickpea77]

The boys spent a few days at their grandparents as we had to work over March Break. My son now has swollen lymph nodes all up and down his neck. I couldn't find any supraclavicle (?) nodes, but there have to be at least five on each side and they feel as large as a kidney bean but rubbery.... He sounds a little stuffed up but says he feels fine.... Still two more weeks until the repeat ultrasound.... I don't know whether to make another appt with the dr due to the new lymph nodes or whether to wait for the ultrasound.... I am feeling consumed by this and reading everything I can find and watching everything I can on Youtube.... any opinions or educated guesses.... If I should be expecting bad news I would rather be prepared than taken by surprise.... thanks for listening.

[Ken_PA]

Maybe you can ask for an Endoscopic Ultrasound, to get a better picture of the internal architecture of the nodes. If that shows the presence of a "fatty hilum" in a node then that almost always means no cancer.

The odds still are against lymphoma. I also sent you a link in a private message.

[Chickpea77]

Thank you again for your reply.  I think this is going to be the longest three weeks of my life.... I am trying to stay positive, it is just so hard when we have no idea what is going on. We have had him tested for Celiac disease many times but the bloodwork has consistently been negative.... Again, thank you for taking the time to respond, and please if anyone has anymore insight I would be so grateful. I suffer from anxiety and this is blowing it through the roof. I am trying to prepare myself for bad news so that I don't crumble in front of my son when the news is delivered, in case it is bad.... I just wish I could find some reassuring studies for peripancreatic specific prominent lymph nodes.... Thank you, and sorry for babbling...

[Ken_PA]

Yes, but my idea is that your eldest son might have an "unusual presentation" of celiac disease. It might be that he gets leaky gut in that spot. The central point here is that if his case was easy to diagnose, then that would have been done by now. Unfortunately, he seems to have something unusual. I'd ask on the celiac forum if what he has sounds familiar to anyone.

Having lymphoma start and be confined to only that one location would be very rare. There is such a thing as Primary Pancreatic Lymphoma which starts right in the pancreas and then spreads to the nodes, and that would probably be less rare. But his pancreas seems okay according to the sonogram, so PPL is probably not present. Also, having some metastasis confined to only that area also seems very unlikely.

So that presumably leaves some explanation involving the immune system. It's even possible that  the whole thing goes way on its own. So that's why the approach is to just watch and wait, before considering a biopsy which in itself carries some risk.

Pancreatitis, by the way, can cause vomiting.

[Chickpea77]

Thank you for responding... no, he is not on a gluten free diet... it is his little brother who has Celiac Disease....

[Ken_PA]

Hi, reassurance you say?

Well, the shape seems normal -- not round or long and thin. The size is not so large that it has to be lymphoma - but you wouldn't want to see any get much bigger.

Next, you'd want to know in general about the causes of lymph nodes getting larger. Here's one of many good articles: http://www.aafp.org/afp/1998/1015/p1313.html  We'd also want to be aware that children are much more likely to get large lymph nodes for various causes, the reason being that their immune system is still learning about the world and reacting to pathogens that get encountered.

Next, you'd want to know about the probabilities involved: lymphoma is in general always much less likely than other causes that are based on a non-cancer immune system reaction - such as infection.

So then we'd look for known causes of peripancreatic lymphadenopathy. The causes that I see written about involve granulomatous diseases such as tuberculosis and sarcoidosis, but neither seems likely.  

So then we'd wonder if this could instead be a rare result of celiac disease.
"Lymphadenopathy is not a common presenting feature in patients with celiac disease but was found in 12% of patients in large series" is from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2729485/

Is he on a gluten free diet?

Still, as you say it seems odd to be localized there only. So maybe there is some other non-cancer factor involved that has been present and contributes to the vomiting over the past months. It's also possible that the oncoming flu also stirred up that previously existing cause to where the vomiting occurred.

So, is he on a gluten free diet?