Medistianal adenopathy

[Jill504]

My husband had CT scan showing pulmonary emboli on June 5, 2009.  Repeat CT scan showed no pulmonary emboli on June 17, 2009.  Referred to hematologist/oncologist on July 1st. He said it was medistianal adenopathy. Referred us to pulmononologist.  All bloodwork is normal. Only symptom my husband is having shortness of breath.  PFTs were abnormal showing restrictive defect.  PLEASE HELP SET MY MIND AT EASE.  I am worried it is lymphoma.

[Corvin]

That's another symptom I have is low grade fevers, there's so many I can't keep em all straight. :-) When I had my Lymphoma scare I was researching it and they were saying if your male, around thirty, and the adenopathy is confined to the chest then it would more likely be Hodgkin's Lymphoma, where Non-Hodgkin's usually affects the neck, and other auxiliary nodes, and affects more of a broad range of age groups. If it was Lymphoma, but I think the Sarcoid is five times more likely than having Hodgkin's Lymphoma. One thing that blew my mind was that there is five forms of Hodgkin's, and like 29 forms of Non-Hodgkin's. I had no idea there was that many different types of Lymphoma.

One good thing about Lymphoma (if you can call it a good thing) is Lymphoma is probably the most treatable cancer there is, and has a really low mortality rate. Another words very few people die of Lymphoma if it's caught early on, and there are more treatment options for it than just regular chemo/radiation too I believe.

I don't have any close family members with cancer, so I think that's maybe why I wasn't that concerned about it. Even though I had hilar adenopathy, night sweats, and low grade fevers I had all these other symptoms that didn't fit Lymphoma so I was fairly convinced it was Sarcoid even before I was Dx'd. I just got Dx'd last April. But it's all tied to the immune system though so it is hard to tell them apart. I guess with me I started having problems seven years ago when I was about 25, and I figured if I had Lymphoma I should be in pretty serious dire straights by now.

I can't even imagine having both of my parents with lung cancer, the stress that would cause may even be a major factor of what made his current illness become active. High levels of stress over a long period of time has a pretty negative affect on the immune system. I hope both your husband, and mother in-law have a good prognosis, take care, and keep in touch. ~Corvin

[Jill504]

Also, all bloodwork inlcuding CBC, d-dimer, ACE, CRP, BUN, Creatinine, chem profile ALL NEGATIVE.  DRAWN MAY 7, 2009 and then again July 1, 2009.  Both times no change.

[Jill504]

Thanks Corvin
My husband is 36. Nonsmoker.  His dad died at age 42 with throat and lung cancer.  He was a smoker and worked on the railroad and his mother is 60 and is living with lung cancer.  She is also a very heavy smoker.  Our primary doc says since the lymphadenopathy is confined to one specific location, its probably not lymphoma since lymphoma normally hits the groin, armpits, supraclavicular, and neck nodes too.  He has no swelling in any of those nodes.  Like I said before, only symptom is the SOB and medistianal adenopathy found on CT scan.  I HOPE YOU ARE RIGHT!!! We are still waiting to hear back from the pulmonologist regarding his CT scan that he had on June 16th to see if he needs to have the biopsy.  He wanted to compare the CT scan from June 5th and June 16th and the radiologist messed up and he did not want to go by the report. He contradicted himself in saying lymph nodes were smaller and then in the impression said they were the same. So pulmonologist said he wanted the actual film.  My husband has no syptoms of like you said night sweats, fevers, weight loss, loss of appetite. He is still very active. SOB is his major problem. On top of other things, he had an EGD done Monday which showed severe acid reflux, gastritis, esophagitis, duedonitis, and hiatal hernia.  The primary doc said this is all inflammatory and the lymph nodes could be reacting to this also.  I really appreciate you taking your time to speak with me.  You dont know how much this means to talk to someone who has gone through or is going through the same problems.  I hope we still can keep in touch if my husband does have the sarcoid.   THANKS

[Corvin]

Your Welcome Jill,

When they were diagnosing me they really wanted to get a lymph node also, and your right they usually want the entire node to get the best specimen for testing. They were convinced they wouldn't find the Sarc granuloma in my lungs because all I had was half a dozen nodules, and peribronchial cuffing. Peribronchial cuffing means a thickening of the bronchial tubes, or basically a narrowing of the airways, and they blamed it on cigarette smoking. I would have had a lymph node biopsy, but mine were the Hilar instead of in the middle so they were packed in with a bunch of major blood vessels, and they said the only safe way of taking one would be to totally do open chest surgery. So I opted for a bronchoscope instead, and the Pulmonologist wasn't very confident it would show anything, but it did, the "cuffing" was actually from Sarcoid inflammation, and was full of granuloma, and they couldn't detect an infection that would be causing the granuloma so they Dx'd me with Sarcoid. I have shortness of breath too, but not were I need oxygen or anything, yet anyways. Still being a young buck is probably what's keeping me out of the hospital for now anyway.

With your husbands restrictive airway with the lymphadenopathy I can almost guarantee that it is Sarcoid, and if they do a Bronchscope instead I can almost guarantee they will find multi nucleated giant cell granuloma.

If they do the Mediastinoscopy it's going to be a lot more invasive, they have to put him completely under, and put a breathing tube in, and make an incision in the nape of the neck, then they have to pump gas into the pleural cavity, and partially collapse the lungs to make room to get the scope in. In the mediastinum the nodes are fairly easy to grab it's like "dumpling soup" a thoaratic surgeon told me. But it's a little more invasive than a bronchscope.

A bronchscope isn't a walk in the park though either, the worst part is when they have to numb the back of the throat, and the nasal passage. You have to basically gag on a metal nozzle, and numbing fluid for like ten-fifteen minutes. After that was over I felt them start to push the camera up my nose, and when it got to the top of my nose I fell asleep, and don't remember anything after that. So the rest was peaceful after the waterboarding :-)

They may say they are trying to spare your husband from having two procedures. But with insurance the bronchscope only cost me about $360 dollars out of pocket, I was kind of surprised the insurance covered that much. The thing is if and when they find granuloma in the lymph node they still can't really rule out TB, Histoplasmosis, Mycoplasma, and other chronic infections without doing a bronchscope with lavage. But it would help set your minds at ease if they are negative for any malignant cells. When they took biopsies from my bronchial walls they still sent them to some big lab in California, and checked for any signs of cancer too which helped set my mind at ease.

I am fairly symptomatic with night sweats, arthritis, skin lesions, SOB, chest pain, fatigue, weakness, numbness, and other things I'm not even clear on yet, and my ACE, ESR, white count, CRP, and D-dimer are all out of range, but I don't have lymphoma so I don't think you and your husband should worry to much about cancer. Unless his parents or siblings have had cancer before, and it runs in the family. But I will assume your husbands mother has some kind of "autoimmune" condition, like RA, Asthma, Fibro, or something or if not his mother yet then for sure his maternal grandmother. I don't know how old your husband is, but I would assume somewhere between 30, and 50.

But wether your husband decides on the Mediastinoscopy or the Bronchoscopy the main thing is to get it diagnosed, but I would do the Bronchscope first, and if that ends up being inconclusive for some reason then do the Mediastinoscopy.

If he does get a Dx of Sarcoid then the next thing is wanting to dump a bunch of immune suppressants on the patient which I don't agree with either, but that goes with me believing Sarcoid is an infectious disease so those medications are contradicted in Sarcoid. You can always check out the links in my journal later on if you are more interested. ~Corvin

[Jill504]

Thanks a bunch.  He did have an ACE test and result was normal.  Pulmonologist did say  you can have a normal ACE level and still have the sarcoidosis. We are awaiting to hear if he needs the biopsy. Pulmonalogist wants a mediastinoscopy if he reviews the second CT scan and the lymphadenopathy has not changed.  I do know the lymphadenopathy has not gotten bigger.  The question is has it gotten smaller. something about taking the whole lymph node to set our mind at ease.  

[Corvin]

Hi Jill,

I went through the same exact thing myself, turned out to be Sarcoidosis. The Pulmonologist will probably image them in four weeks to see if they shrink. Make sure they also do a serum ACE test in the meantime. If it ends up the Pulmy wants to do a mediastinoscopy to biopsy the lymph glands, and would do a regular bronchoscopy instead. The Mediastinoscopy is more invasive because they have to make an incision in the nape of the neck, and feed a scope down behind the rib cage, where a bronchoscope they just run a scope down your throat into your trachea, and into the lungs. I would also lean towards the Bronchoscope because they can take lung washings to culture at the same time to rule out infection. Well actually Sarcoidosis is an infectious disease, but that's another long story. The infection that causes it just isn't recognized or respected by medicine yet.

So in conclusion I would recommend a bronchoscopy if the lymphadenopathy doesn't resolve in a month. But I'm just a patient not a doctor. Let me know if you have any more questions, chances are I went through the same thing.

http://www.medhelp.org/medical-information/show/433/Sarcoidosis

http://www.labtestsonline.org/understanding/analytes/ace/glance.html

~Corvin