Abnormal Lymph nodes - 1250400

dbrad322012
Posts:6

Hi My name is Dana, 36yrs and female. I was diagnosed about a month and half ago with Crohn's Disease/ Colitis . The same week I was diagnosed with Crohn's my internal medicine doctor wanted to do a base line chest x-ray. Okay no biggie. Didn't hear anything assumed everything was fine. just trying to get use to life with Crohn's. about a month later I had some lymph nodes swell up under my ear (painful) and down my neck, couldn't get into my doctor until a week later. The PA stated they would probably go away on there on. They did mostly by the time of the appointment with my doctor but i went in, just to say they went away and for a little insight. The nurse asked if anyone had contacted me about my chest X-ray. No is my response. Then the doctor comes in and says you have abnormal lymph nodes in your chest x-ray. Heart sunk. Okay we decide just to do blood test, and I'm Alone at this appointment, she said the test were normal except my sed rate level was a little elevated but this has been a problem for the past couple yrs.(6months earlier was told something is brewing but don't worry about it right now) they aren't worried about it. She said when i was ready probably the best test is a Ct Scan. So I've Called the nurse the past two wks twice a wk to set up that scan but no response. My question is how much do I push to get this scan set up? Can the lymph nodes in my chest X-ray be related to my Crohns? Recently the past three days have had pain in the kidney area (around the mid back area) that doesn't allow me to bend over. Its was the weekend so i just dealt with it until I can call the office. Any insight would be so helpful! Thank you for your time. Night

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Reply # - November 19, 2012, 03:28 AM

certain spring
Posts: 762

Hi Dana, just to say hallo and I am sorry about the Crohn's. My brother has it and so I know what a trial it can be, although he is managing well and has not had any serious relapses.
I'm not a doctor but, while you are waiting for a proper response, I wanted to say that abnormal-looking lymph nodes can occur in the chest for reasons unrelated to lung cancer (which would be very unusual in someone of your age), including various types of inflammation or infection. I hope you can have a CT soon to put your mind at rest, but it sounds as if your doctors are not worried. Very best.

Reply # - November 19, 2012, 06:29 AM

catdander
Posts:

I agree with certain spring it is likely an infection. Though I would want to get to the bottom of it. It doesn't sound usual that a doctor's office wouldn't call you back after 2 or 3 weeks of calling. Something may be wrong/short handed possibly. Stay on top of them. An infection isn't something to ignore.
Last year I had to go to my doctors' office when I was sick and couldn't get a call back.

I will ask a doctor to comment just in case we both have it wrong. Odder things happen everyday. :wink:
You should hear back with a day.

Janine
forum moderator

Reply # - November 19, 2012, 10:43 AM

certain spring
Posts: 762

Thinking further about this - Crohn's is an auto-immune disease, and it seems as if problems with the lymph nodes are common. I wonder if this might also be a question for a Crohn's specialist - Dana, do you have access to such a person?

Reply # - November 19, 2012, 01:39 PM

dr. weiss
Posts: 206

Dana,
You are absolutely correct to recognize that this is the kind of thing that you want to work up quickly. From a practical perspective, the impending holidays make this all the more true. Right now, you know that you have some enlarged lymph nodes. Enlarged lymph nodes can come from very benign causes, such as fighting infection and inflammation from inflammatory disease like Crohn's. If the enlarged nodes are from something like this, you want to know quickly so that you can relax, be reassured, and enjoy the holidays. Enlarged nodes can also be from scarier things, like lymphoma and other cancers. Since many of these scarier causes are curable, and most are treatable, you want to know quickly so that you can do whatever you need to do. CT examination can be helpful to better understand where there are nodes and how big they are. For clarifying what they are, there's nothing like a biopsy. You may wish to call and ask to speak directly to the doctor. If that doesn't get you anywhere, perhaps a second opinion might be helpful to make things move.

Reply # - November 20, 2012, 07:40 AM

dbrad322012
Posts: 6

Thanks Everyone Finally The Nurse Calls Today. I going in Friday for the Ct Scan. Fingers Crossed. We post again later. Take Care Dana

Reply # - November 21, 2012, 09:21 PM

laya d.
Posts: 714

Hi Dana - -

Just wanted to wish you lots of luck with your CT scan. . .Hopefully, after the wait that you've had, all has resolved.

Please keep us posted.

Laya

Reply # - November 22, 2012, 06:42 AM

cards7up
Posts: 635

I have to agree that it's more than likely inflammation related to the Crohn's disease as you said it had pretty much resolved itself before your appt. And cancer does not resolve itself. And your SED has been off for a long time. Get the CT to give you peace of mind. Wishing you the best. Take care, Judy

Reply # - November 28, 2012, 03:09 AM

dbrad322012
Posts: 6

Yesterday got my results. nothing good. There are prominent lymph nodes present in each hilum. the largest in rt hilum measuring 18mm in diameter. There also is mild subcarinal adenopathy in the mediastinum. the nodes in the subcarinal region measure up to 2.2cm in size. a small pneumatocele is present in the medial inferior rt upper lobe of the lung, there is a triangular-shaped, 13 mm soft tissue mass. this is noncalcified and it has irregular borders. there is also a small pneumatocele in the central inferior left lower lobe of the lung.
Impression:
There is bilateral hilar adenopathy. THere is also adenopathy in the subcarinal portion of the mediastinum. A 12mm triangular-shaped, noncalcified, soft tissue mas is present in the basilar right lower lobe of the lung. This has indistinct, irregular borders.

prior study there was no definite adenopathy in 5/25/2010.

PET CT scan is recommended. An inflammatory process, such has sarcoidosis or a lymphoma, is also a diagnostic possibility.

I dont understand it all not at all. Next step is back to dr. singh. I'm just out of words. i really thought i was just over reacting when i went into the appointment.

Reply # - November 28, 2012, 03:23 AM

apra
Posts: 142

So sorry to hear about the scan results. But it can still be something very treatable. My husbands latest scans also showed enlarged lymph nodes wih double the SUV of the previous reading in August so we have decided to do a biopsy to find out what this is all about.

Prayers and best wishes to you.

Reply # - November 28, 2012, 03:35 AM

certain spring
Posts: 762

I'm sorry you are having all this worry.
Scan reports always sound terrible, partly because of the technical terms used, and partly because the radiologist has an obligation to describe everything that he or she observes. Even a clear scan can be made to sound alarming. So I would try as hard as you can to hang on, and not to despair until you have talked to your doctor and perhaps had the results of a biopsy. It might be worth re-reading Dr Weiss's post from November 19, where he covers the range of causes for enlarged lymph nodes ("adenopathy"). These include benign causes (I quote) "such as fighting infection and inflammation from inflammatory disease like Crohn’s".
(Just to remind everyone, Dana is 36 and has Crohn's disease.)
Let us know how you get on with your appointment. All best.

Reply # - November 28, 2012, 08:47 PM

Dr West
Posts: 4735

I'm sorry -- the key now is to get a biopsy to determine what's going on. It could be something like lung cancer, though that's not especially common in a 36 year old, even if we know it can happen. A lymphoma would be better, even if it's a form of cancer. But sarcoidosis can look for all the world like one of these, including lighting up on a PET scan, and it isn't a cancer at all. The key is that nothing will clarify the diagnosis except for an actual biopsy. And once you know what you're dealing with, you can make an actual plan.

Good luck.

-Dr. West

Reply # - December 14, 2012, 09:02 PM

dbrad322012
Posts: 6

Update Had one of my two biopsies done today. As they put me to sleep the doctor tells me the don't think its wise to wo the ct guided needle biopsies today because its friday and late in the day and the increased risk in bleeding they are going to wait to do that on Tuesday afternoon. scared and disappointment sits in and i go to to sleep. wake up and the doctor says me lungs look pretty good. They took a biopsy of an lymph node,they usually get blood but he got fluid, unsure what that meant but didn't ask. I should of but all I'm thinking about is the biopsy on Tuesday. IDK just more waiting and I'm tired.Tired Of the itching and every time i get something done, PFT test done on wednesday morning, and by evening i have a rash from head to toe. Back at my regular doctor to be told it was probably a reaction to stoping the entocort two wks ago abruptly, cant be the abuterol they gave me on wednesday. Ok shot of predisone and restart the encort and the itching and rash arent bad today. idk. Thx will continue to update as i know more. Night

Reply # - December 14, 2012, 10:09 PM

Dr West
Posts: 4735

I'm sorry for the wait. It'll be great to get answers. We'll be here with whatever help and support we can offer.

Good luck.

-Dr. West

Reply # - December 18, 2012, 07:42 PM

dbrad322012
Posts: 6

Had my ct guided lung biopsy today. fingers crossed for good news. Question tonight is why am I in so much pain? The pain goes from the sight in the back around to the front under my breast, makes it hard to breathe and i cant lay down. same pain i had right after he took the second biopsy and pulled the needle out. laid there for two hours after had the xray and the lung is fine. but it hurts i thought it would be better 9hrs later but it isnt. what can i do to sleep?

Reply # - December 18, 2012, 09:43 PM

Dr West
Posts: 4735

The leading concern would be that there could be a collapsed lung. If things are getting worse rather than better, or if things are just so severe it's a real worry, it's appropriate to either call or get checked out urgently at an ER/urgent care center.

Good luck.

-Dr. West

Reply # - December 26, 2012, 03:32 PM

dbrad322012
Posts: 6

OK I went to my appointment today. Doctor said everything we did show that right its benign. BUT we will have to do another ct scan with contrast that I'm allergic to and all we can do is give u bendryl and predisone before the contrast to help with reaction. And see if its growing if it grows more than a mm than we will have to a PET Scan and if that shows anything we will.have to take a larger tissue biopsy. My heart dropped. Just because we didn't get anything right now, we can't tell it wouldn't grow into something. OK sounds to me this was a base line to go off of. So in February I start all this again. Should be worried? I'm not feeling like I got any answers today. Remember in may 2010 my lungs were OK. Idk what to think. Help.

Reply # - December 26, 2012, 04:05 PM

Dr West
Posts: 4735

We often want to check to ensure no progression just to be cautious. I think the best way to clarify the level of concern is to ask directly, if you can.

-Dr. West

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