Biopsy--bronchoscopy or mediastinoscopy

I have many enlarged lymph nodes in my mediastium area, hilar, parathyroid, and tracheal. No lung nodules. All of this from a CT scan. Maybe possible eye involvement.

I am not into the Mediastinoscopy. I just can't get over the fact they go in invasive. My pulminologist suggested this over the brochoscopy. I refused the mediastinoscopy at this point since I don't have fever, night sweats, wt loss etc that might suggest lymphoma.

So we are going to do a bronchoscopy this friday but my doc is not sure he will find anything since my lungs are clear.

Has anyone have just huge prominent lymph nodes in the mediastium and hilar area and have sarcoid.

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I had/have engarged lymph nodes on chest ct in those places and they removed a lymph node just above my collar bone for lab tests. Sarcoidosis, no lymphoma (what they expected since my blood tests were not showing typical sarc). I didn't have any symptoms at all other than uveitis (eyes) when they found my enlarged lymph nodes. No sweats, no pain, nothing other than my eyes burned a little (was not uveitis flare) The removal of the lymph node was easy and painless outpatient surgery and confirmed sarcoidosis.

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I have had both the mediastinoscopy and bronchoscopy. If you are looking for a definite answer I suggest having the mediastinoscopy. When I had the bronchoscopy the doc was unable to do the biopsy and ended up going through a lot of crap before having the mediastinoscopy. I bounced back pretty quickly from the mediastinoscopy and I knew 2days later that I had sarcoidosis.

I had the enlarged lymph nodes in the mediastinal and hilar region, cough, night sweats and no weight loss. My lungs were and still are clear.

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have they made an appointment with an OPTHALMOLOGIST for you to see if you have eye involvement? do you have 'floaters' in your vision?
red eye?
dry eyes?
Wish you hte best,
mike

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I do have an eye appt this month. My eye symptoms were the main reason why I found out. I had a ct scan of the head and neck and they found some enlarged nodes in neck area, but for some reason they scanned my chest. They found some nodes there enlarged. Then I did another scan of my neck and chest a week later and they found these wonderful enlarged nodes. Now my pulminoligist wants me to get my eye looked at further.

My eye symptoms were blurryness, halos, crazy colors etc. It lasted for 20 minutes or so. Very scary. Never had it before. I went immediately to the ER. Then the saga began from there.

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In my opinion, I see the mediastinalscopy as the better of the two. It is minimally invasive, and it tends to heal quick. That was my experience. I was back at work the next day, though I was a little sore. I think getting back to normal as quickly as possible is best, and just suck up a little discomfort to get through it. To me , it was no big deal. Others have had different experiences, so it does vary from person to person.
Gary, RN

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"they found some enlarged nodes in neck area,"

They should be able to biopsy one of these.

The Mediastinoscopy i not that bad its a laparoscopic procedure they do through a small opening.
i had no lung involvement just two lymph nodes in the mediastium.

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I had Mediastinoscopy 12/2010 . Sarc. confirmed.
Enlarged lymph nodes and small nogles in lungs.
I have constant cough , no wt. loss . Pulminoligist
wants to wait 4 months for next ck. up.Anyone with
similar symtoms?

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Masala -

The bronchoscopy might be helpful if they're able to sample the mediastinal lymph nodes using a transbronchial needle aspiration (TBNA). When done the traditional way, it provides a diagnosis in about 50-60% of cases. More recently, some investigators have started to use endobronchial ultrasound (EBUS) guidance. With this procedure, the diagnostic yield increases to about 80%.

Even if they're not going to do the TBNA, conventional transbronchial biopsy, even in 'normal' looking lungs, can be diagnostic - although in only 30-40% of cases.

You should ask your doctor what biopsy tests (and washings) he/she is going to do before you have them done. There's no better way to prepare for what to expect unless you know what will be done. Also, it's best to know the likelihood of a diagnosis with each procedure before having it done; this may prevent you from having multiple procedures done.

Hope this helps.

Eric S. White, MD

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Thanks Dr. White for informing me about the TBNA and the washings. I will be calling the clinic today for pre-registration and I will ask if he will be doing this. Very good points.

Someone highlighted that I mentioned they found enlarged lymphs in the supraclavicular area. I am not sure why they didn't suggest biopsying them. You would think its easier unless they are NOT REALLY big. I will mention this also.

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Masala -

You're welcome. I must have missed the part about the neck lymph nodes, but in general, if you can find a surgeon willing to do an excisional biopsy (where they remove the whole node, not just put a needle in it), then I would go that route before doing bronchoscopy. Some people actually like to have biopsy confirmation from two separate sites before they'll say someone has sarcoidosis. Remember, sarcoidosis is what we call a "diagnosis of exclusion," meaning we have to rule out ALL other possibilities before we can say something is sarcoidosis. There is NO gold standard test to 'prove' sarcoidosis.

Hope this helps - keep us posted.

Eric S. White, MD

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the eye symptoms might suggest that you have had bout of ocular migrane (correct term is migrane with aura) since it was transcient in nature.
if halo's are present around lights that is sometimes related to glaucoma.
starburst pattern's around lights usually indicate cataracts.
double vision can be from optic neuritis as can a white out of vision but white outs that are transcient in nature can also be from vascular disease.
pain inside the eye can be from optic neuritis or a pupil stuck to the iris from uveitis.
floaters in vision can be related to uveitis.
photophobia, aversion to light could be from uveitis, optic neuritis or corneal inflammation.
red eye can be from conjunctivitis, uveitis, episcleritis and scleritis.
any of the above should indicate a need to get into the opthalmologist right away. especially if you have an autoimmune disease including sarcoidosis.

Wishing you the very best,
Mike Bartolatz

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I know this is a hard decision to make as there are no great options here. Thing to consider is how much you want to go through to know for sure. As mentioned...bronch. is less successful in getting accurate samples than mediast. I didn't have any lung involvement, but had very large chest nodes, so we opted for mediast., which I recovered from in about week total. Do you have good insurance? Reason I ask is that may factor into your decision too if you end up having multiple procedures. If they are able to get good sample from your neck nodes-I'd probably consider that first as it would be less invasive. For me the worst part was just not knowing. Having the mediastin. was worth it. Hope things go well for you whatever you decide. Please keep us posted. - Jayne

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I had a lymph node removed in 2004; the procedure was outpatient, and I had an easy recovery. The biopsy showed it was filled with granulomas- classic sarc.

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Hi there

I had enlarged lymph nodes in the same regions as you and had a mediastinoscopy done for a definitive diagnosis. However I have a visible scar due to not healing properly after surgery. Due to heart complications, I spent 2 days in the hospital recovering. When the stitches came out a week later, I experienced pain which the nurse ignored when i told her. Not to scare you but the next morning the cut had re-opened and because it is invasive, I had to rush back to my surgeon who had to re-cut and put in stitches under local anaesthetic which he then removed 2 weeks later. If you go this route, please be sure that you heal properly before they remove the stitches. I had flu-like systems and lost a lot of weight before my diagnosis in 2000.

Take care and good luck.

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Hi Dr. White,
I want to run something by you. About 3 yrs ago I was walking donw my neighbors driveway and apparently inhaled something because I could feel it in my throught & lungs. I could not see or smell anything. I thought it strange but just went on about my business. After that my chest starting hurting, like a cold with congestion. It hurt especially in the mornings. I finally went to the Dr. and a CT showed several enlarged lymph nodes (med. & heliar). I had a Bronchoscopy done. No sarc. I also have a nodule on my left lung. Doc says the nodule is nothing - just scar tissue. ACE was up around 90. Since then the ACE has come down to 50 something and nodes are slowly shrinking. I am getting a CT every 6 months to watch all of this. What do you think? I still have chest pain from time to time and the Doc has not ruled out sarc. It bothers me to know that "something" is there and I would like to know what "it" is! The nodes are mediastinal and hiliar. Do you think I should have furthur testing?
Thanks!
Bev

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Bev -

I'll try to answer your question as best I can, but I need to start off by saying I cannot make a medical recommendation without reviewing your entire medical record. That said, please take what I say as a generalization of what I might recommend in a similar patient. I strongly encourage you to discuss anything I write with your primary physician before coming to any decisions or conclusions.

In general, a single episode of inhalational challenge (breathing something in) should not be enough to cause lymph node enlargement in the chest, and wouldn't cause a scar over a short period of time - typically it will take many weeks or even months of inflammation to cause small scars in the lungs, and when we see these scars in patients, they oftentimes have been there for years before we knew it.

I personally don't put much stock in an ACE test - I know, I'm being controversial. But analyses of multiple studies suggest that it's unhelpful as a diagnostic or prognostic test in sarcoidosis. Yes, some people with sarcoidosis have an elevated ACE test and when their disease goes into remission the level goes down. In those people, and ONLY in those people, I will get an ACE every now and again. But I do not get them routinely because they're very hard to interpret and don't change how I manage my patients.

You don't mention how long you and your doctor have been following the nodule and lymph nodes, but typically in someone in whom there's no real concern for lung cancer, 2 years of follow-up demonstrating no growth in the size of the nodules is enough to feel comfortable that there's no cancer there - it's not 100% accurate, but it's pretty close.

If you're concerned that you may have sarcoidosis that hasn't yet been diagnosed, it is reasonable to request a second bronchoscopy with lymph node aspirate (assuming there's no place else [skin, other lymph node, liver] to biopsy); sometimes we have to do a second procedure to find it. But I will say that if your symptoms of chest pain occur only time to time, I might not be inclined to treat (even if it is sarcoidosis) since, as you know from reading this website, the drugs we use are sometimes worse than the disease.

Sorry for the long-winded response. And PLEASE do not take what I've written as a recommendation for what you should do. The best advice would be to speak with your doctor further about this.

Hope this helps.

Eric S. White, MD

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I appreciate so much all of you coming on and helping me here. I wanted to give an update. I will be going in for a bronchscopy tomorrow. Thanks again Dr. White for the suggestions. I did call my pulminologist and asked him if he is doing the needle aspirate. He said he will be doing a transbronchial needle aspirate with US and that he looked at my scans a second time and noticed there are nodules in my lung. I am hoping they can get good samples. He said doing the bronc can show more than a CT scan?!?

Should I be concerened with needle aspirtate? Any risks involved? Getting nervous now.

espirn-so sorry that you got your stitches out before they even checked if they healed. yikes. Thanks for the headsup.

uveitisguy--the eye doc in the ER diagnosed me as ocular migraine. I had no headache. My pulminologist doesn't agree with it so he wants me to investigate my eyes even more.

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Thanks so much, Dr. White, for your opinion. My Dr. has been monitoring this for 3 years. I also failed to mention that I have smoked off and on since I was 10 years old (more off than on - and the most I ever smoked was a pack a day for a few weeks). I am now 50.
Best to you,
Bev

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masala40 -

The added risks of transbronchial needle aspirate (TBNA) over that for bronchoscopy in general are quite minimal when done with ultrasound guidance. So nothing to be concerned about that you haven't already gone through. With ultrasound guidance, the likelihood of putting the needle into anything other than a lymph node is small since there's direct visualization.

Bev - Not to worry; as I said, I wasn't making a specific recommendation. But I will tell you that it's reasonable to follow CT scans for lung nodules, although I suspect most physicians would only get them annually or once every 2 years after a 3-year period of no growth.

Hope this helps.

Eric S. White, MD

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