I think this is the first time I have posted a topic for me. Anyway here goes.

For those of you who do not know, I am a total larygectomee who has survived this disease twice. 16 months ago, I was on my way down the staircase to go to work and started spewing blood out of my lungs in giant volumes for about an hour. Never happened again. I managed to get to dr and they did CT scan and found nothing. Since then they have been running CT scans of the lungs every 2 -3 months and still nothing, although they see 'stuff' in the lungs that keep moving around which is probably due to aspiration or radiation.

So now they think I might have a 'atypical ? infection' and want to do a bronchospy which is fine with me. I don't want any more CT scans every 2 months when I am having absolutely no problems. If it makes them happy to turn their little light on in my lungs, let's do it.

But then they tell me, they want to do a biospy, actually 5 to 8 at the bottom of the lung because their little light can't see down there. I ask what the downside of this can be, and am told odds are 1 in 100 of a collapsed lung. This doc has only had a problem in 2 of over 900. They are not lookling for cancer, they are looking to rule out this infection. With the way my luck is going, I do not want to risk this.

Then they tell me, if it is this 'atypical ? infection', it is a year and a half on Zithomax. I cannot take this drug or most other antibiotics or pennicillion. They tell me all other antibiotics have worst side effects and need to be administered by IV. So I can't be treated.

Sorry to be so windy. My question is: do I let these 'over zealous' drs do the biopsy and risk the possibility of a collpased lung to see if I have this infection which we can't treat and is causing no problems or do I tell them to just peek around and not do the biopsy. Remember. noone thinks this is cancer at this point.

My gut don't do the biopsy and risk a collapsed lung unless they see something they think is cancer since we can't treat it anyway. What do you guys think?

Anyone had this procedure? Anyone had problems after lung biospy?

Thanks for your help.
Eileen

Not to minimize your concerns, I have had a collapsed lung 2 times. The first was after a needle biopsy and the second was after a video assisted thoracotomy. They resolved very quickly. The one from the biopsy added a few extra hours in recovery for an out patient procedure. The post operative collapse resolved during my already anticipated 3 day hospital stay. It will occur more often if you were a smoker, which I was. Anyway, it sounds a lot worse than it is. I did not know a person can be on Zithromax for that long. It seems you would develop a resistance way before 1.5 years.

Glenn

Hi Glenn,
Thanks for the response. A needle biospy,or rather 8, the size of a pinhead is what they want to do. They said they would have to insert a stent if the lung collapsed. Did they do this to you? If so what, did it involve? That sounds like surgery. How did yours resolve itself?

All this risk for no symptoms and even if I have this infection, we can't treat it. This is probably just mucous or some coffee I poured down my neck when the TEP was leaking. If they had asked do it a 16 months ago, I could see it. Still leaning toward just bronchospy without biopsy.

Eileen

Eileen, for what its worth, I can certainly see why your gut is telling you not to do it. If there is really no way they could treat the infection anyway, what on earth would be the point? I mean, that's just my OWN reaction. My 2 cents as they say. Have yuo asked the docs this question and put it that way? What answer do they give?

Nelie

Thanks Nelie.

Their point is 'they want to know what this stuff is that keeps moving around the bottom of the lung' on the CT scan'. They also want to send me up to gastroenterolgy because of a minor something the radiologist saw in passing on my pituitary gland. My surgeon says 'ignore it unless it changes'.

I did ask the dr that question and when he saw my hesitance to have the biospy, he decided I was wasting him time and told me to go home and think about it. I'm still thinking NO! I think they my be able to get their answers with just the broncoscopy.

Come on guys. I need some more input on tis. What would you do?

Eileen

My daughter had a terrible lung infection that they biospsied to confirm it. She ended up on a IV for 5 days of anitbiotic to concentrate killing it since she had it for months on end. I think its worth the piece of mind to understand whats going on, hopefully its some infection that they will know exactly what it is from the biopsy and then can administer antibiotics to clear up.

I have no symptoms or problems. Just some scuzz on the CT scan. They are not talking about an antibiotic for 5 days. They are talking about an antibiotic I can't take for 1 1/2 years and the alternatives are worse. They don't really think I have this but are just want to rule it out. They may even be able to determine that I don't have it by the wash they will do as part of the bronchoscopy. My inclination is still NO BIOPSY unless they see something that is suspicious for cancer.

More opinions needed.
Eileen

PS. I am having this procedure Thursday morn so I need your input my tomorrow night EDT.
Thanks,
Eileen

Eileen, For what it is worth, ask them is the risk of diagnostics worth the risk of what ever they think "it" is.

I, for one, prefer less holes in my body and instinctively pursue that lifestyle.

I tend to agree with you Eileen,
Whats the point in knowing what it is if they can't treat it? I like Mark prefer less invasive procedures unless they know exactely what they are looking for. Just my 2 cents worth.

Danny Boy

Thanks guys! Glad you agree with me. I'm not fond of extra holes in by body either besides I've had such a string of bad luck recently, I'm afraid to risk anything that has a downside unless it is a necessity. Think I'll just get the bronchoscopy and only allow a biopsy if they see something they think is cancer. Will let you know how it turns out.

Take care,
Eileen

Eileen
No-one I know is allowed to have any extra cancer at all, so prayers, candles, crossed fingers and toes, hex signs... What ever it takes you have to be fine...
Sunshine... love and hugs
Helen

Thanks Helen. I'm 'off to see the wizard'. Well see what they find or more likely don't find. Will post tonight or tomorrow if I know the results.

Eileen

I'm back from the hospital. Dr was pissed that I would not let him do biopsy on area of lung which he can't see but agrees that it is not cancer. I said when I had symptoms he could do it, not now. From the areas he could see, both lungs on in healthy condition and no signs of anything that would need a biopsy. This should get him 'off my back' about he 'junk' he see's in the CT scans in my upper lungs. He did several washes for various infections and says it will be 4 weeks before he gets the results. Will let you know then.

Meantime thanks for the support everyone. It means a lot.

Take care,
Eileen

glad to here you stood your ground eileen. i think you did the right thing good luck prAYERS AND HUGS ...MAZ