Puzzled about husbands lung problem

[worriedspouse]

My husband has been in and out of hospitals and doctors offices for the last three or four months.  He started coughing blood back in March/April of last year, fairly large quantities, which has since abated on its own.  Chest x-rays have shown an undiagnosed mass in right upper lobe.  CT scan shows problem area(doctors here sometimes calling it a tumor, sometimes a mass...). Sputum tests came back negative.  Bronchioscope(?)done with brushes to swab areas came back negative/inconclusive.  Needle biopsy came back negative.  Lymph nodes in the neck just above collarbone also seem to have come back negative.  PET scan done however, came back as showing uptake(we did not see the results, doctor just told us, so we don't know how bad)We have just had a procedure done where doctor went in thru tracheal area to obtain samples from mass and saw something about nodules in the hilar area(?)of the lung; I am assuming doctor took sample of both areas, results will not be back for a while.  Can nodes in neck have shown negative yet nodes in lung will show something is there? Can you explain a little more to me about this procedure and what else problem could be, in your opinion?  Also, if it was cancer, would SOMETHING not have shown up by now, after all these tests?  What else can you tell me about sarcosis? Not finding much specific to the lungs on the internet. Yes, husband is a smoker(trying to quit). Doctors not too forthcoming on other things this might be.....we are fearing the worst, very hard on the family.  Thank you for your assistance, whatever it may be, during this time.

[weenie120]

A related discussion, Do I have sarcoid or not? was started.

[nkm70]

A related discussion, Sarcosis or tuberculosis or both was started.

[Lori_B]

Worriedspouse, what was the outcome of the biopsy?  I'm keeping my fingers crossed for you.

Lori

[worriedspouse]

Its two weeks after the lung biopsy, and we are headed back to the doctors tommorrow for a follow up.  Don't know what to expect, as we have not heard a peep from them since the biopsy.  We are assuming(as dangerous as that might be) that they did not find anything serious(as in cancer) when they went in.....it seems that what he went through and what I have seen described are a little different, but are meant to achieve the same ends...he had an incision done at his throat, and they went in and took some samples of the tissue in his lung;  they did not go in through the chest wall.  Is this the same idea as what the nurse mentioned above?  
If they had found anything malignant or serious, would they not have contacted us sooner, rather than waiting this long?  It would seem to me that the results should have been in over a week ago, and we have heard nothing.  If no one can post right away(even if its just to say hang in there, I will write tommorrow night with the results.  Hopefully it will be a good post.........

[National Jewish]

Your husband

[Jane1]

HI

Sarcoidosis is a systematic disorder affecting many organs, most notably lungs, it is treatable with steroids but can resolve without treatment in many cases.  However after all the procedures your husband has had I am mystified as to why sarc hasn't been questioned.  Ask for an ACE level Blood test, to see if it shows up in the blood. But question everything because if it is sarcoidosis, it shouldn't be treated as cancer, sarcoid can in some cases be debilitating but in most cases it can be monitored by your physician and medical team with drug treatment and sometimes without!

Check out the web for more details on SARCOIDOSIS -
Have you asked about TB?

Rgds
J.

[Lori_B]

Sounds like they haven't quite pinpointed your husband's problem yet.  If it is sarcoidosis try doing a internet search for either Sarcoid or Sarcoidosis and you should find a fair amount of info.  From what I understand, sarcoid follows three different courses.  For some people it comes and goes on its own, often without them even knowing they have it.  For some, it can be more severe and affect any number of organs (usually lungs), but it still runs its course and basically burns itself out.  A smaller percentage of folks have chronic sarcoid that can come and go for years - but even then there are treatment options available.  

I know it is hard, but try not to make yourself crazy with worry until you know for sure what you are dealing with.

Lori