Lymphoma scare

[lissafrankie]

Hello! My 19 year old daughter has had some swollen and very painful lymph nodes pop up on her head and neck this week. I think 6 maybe. And a very small one in her groin area that is sore as well. She has always had prominent lymph nodes ever since she was little and I’d take her to her pediatrician, they would do blood work, it always came back normal and the nodes would go back down in a week or so with no treatment. So, I took her to her GP on Wednesday of this week. Her dr didn’t seemed too concerned, no fever, just tired. They wrote her a prescription for an antibiotic (zpack), took blood and sent us home. Her blood work came back completely normal. She has one antibiotic left to take but her nodes are still sore and swollen. The one in her groin seems to be going away. I decided to make her an appt with an ENT. They got her in at ENT yearerday (Friday). The ent did a pretty thorough examination, asked a lot of questions. He mentioned lymphoma as a possible cause but said it was unlikely. He ordered some more blood work and a chest X-ray.  He’s testing for Toxoplasmosis, Cat Scrarch Fever, HIV, TB, Angiotensin-Coverting Enzyme (I have no idea what that one is). My daughter has recently gotten a new kitten from an animal shelter and she does have a few scratches on her but I’m not exactly concerned that this is the cause for her swollen and painful lymph nodes. She is also getting over a cold that she contracted about 3 weeks and still had a cough and mucus left over. My daughter also had a full blood work back in April and all was normal then. I guess my question is do you think the chances of this being Lyphoma are high. And why or why not?  She’s been pretty healthy her whole life. And they are also testing for mono. Thank you in advance.

[Ken_PA]

You're a great mom, Lissa. And an added bonus is that while helping her you can also end up helping yourself.

The beginning treatment as described by Afrin and other doctors in their talks is an H1 blocker, an H2 blocker and a mast cell stabilizer such as quercetin (which helps to keep the mast cells from getting set off too easily).

[Ken_PA]

Good. There are other videos by Afrin and also by Dr. Theoharides (the granddaddy of mast cell disorders). Also various blogs by patients.

What does your daughter think?

[lissafrankie]

She really doesn’t think it applies to us but she will need to watch the video. I have had the occasional splotchiness/ flushing my whole adult life and I’m 49 years old.  I will keep researching. Thank you!! You’re awesome!

[Ken_PA]

"So, if these lymph nodes were cancer, they wouldn’t be feeling better or smaller?"

Correct. Very usually so.

[lissafrankie]

I watched some of the video MCAS. I don’t believe our symptoms are that extensive but I’m definitely interested in hearing the rest of it. You could be on to something.

[Ken_PA]

Every node has an enclosing 'capsule'. When a node enlarges a lot from an immune reaction, it presses against the capsule and that causes pain. Cancerous nodes usually aren't painful because they grow through the capsule.

There are immune cells called 'mast cells' which release the biochemical histamine. Histamine can cause the splotchiness when the mast cells in the skin suddenly go off like landmines and release many powerful biochemicals. Mast cells line the GI tract, too. A fairly newly discovered disorder called MCAS makes them go off inappropriately and causes all kinds of various problems - including mysteriously enlarged nodes.

Find on youtube a video by a mast cell specialist called Dr Afrin, with '101' in the title. You and/or your daughter can see if that fits her. If so, then the next step is finding a doctor who understands MCAS. That might not be easy, though.

Please let me know what you think of the video.

[lissafrankie]

I will definitely look for the video and get back to you as soon as I can.

So, if these lymph nodes were cancer, they wouldn’t be feeling better or smaller?

[Ken_PA]

Hi, Lissa. The odds of lymphoma are very low. The reasons:

- lymphoma doesn't make nodes come up very quickly and then just go away
- things are even more pointing toward not-lymphoma because she's had the pattern repeatedly
- the nodes being sore tends toward not-cancer


Since the antibiotic didn't seem to work, that tends toward some sort of immune reaction without actual infection. If there is no actual cat scratch fever infection, then it could be an immune reaction to cat saliva or dander/fur. But then, other episodes in the past most likely had different triggers. There might be many possible triggers.

Testing for raised Angiotensin Converting Enzyme is a way of looking for sarcoidosis in the lungs, as is the chest x-ray (which also can look for TB). Sarcoidosis is a mystery immune condition. That's probably not what she has, because that just wouldn't go away and come back in cycles.

In her CBC blood tests, if none of her immune cells were not raised then that tends away from being an actual infection - but doesn't rule out an immune reaction.

The ENT is probably testing for all those things to rule them out, but doesn't expect them to be the cause because they don't quite fit. But you never know until you try. So there's no reason to get very worried about lymphoma; but sure, you and she should want to ultimately find out what is the true cause and not give up.


Does she flush a lot, get dizzy when first standing, or react badly to heat or bee stings or some foods?

[lissafrankie]

Yes. She gets very splotchy at random times. And her tummy is sensitive as well. She’s very obsessed with her weight so I don’t think her nutrition is the best. She skips a lot of meals. And I’m pretty sure she doesn’t get dizzy. If she does, it’s minimal. Her nodes today have went down some. Not a lot but some is better than none, right?  And she said they’re not as painful. Is this a good sign? Thank you for answering my questions.