My mother's lung biopsy for pulmonary fibrosis: I'm scared.
November 16, 2009 11:03 AM Subscribe
My mother may have pulmonary fibrosis, which her mother died of. She's been told she should have a lung biopsy, but I've been told it can make her breathing dramatically worse. She's due to have that biopsy on Thursday. I'm terrified. Is it worth it? What are the facts?
Blog posts like The Horror of the Lung Biopsy don't paint a pretty picture, and it's difficult to find first-hand accounts one way or the other. I do know that there is no cure; if it really is pulmonary fibrosis, virtually the only course of action is a lung transplant further down the line. If the biopsy has a serious impact on her breathing, it seems like it could impact her quality of life forever.
What else can she do?
Blog posts like The Horror of the Lung Biopsy don't paint a pretty picture, and it's difficult to find first-hand accounts one way or the other. I do know that there is no cure; if it really is pulmonary fibrosis, virtually the only course of action is a lung transplant further down the line. If the biopsy has a serious impact on her breathing, it seems like it could impact her quality of life forever.
What else can she do?
Not a doctor and all...
My dad had to undergo three lung biopsies before his lung cancer could be accurately diagnosed. He said they were quite painless (local anesthetic and a small dose of tranquilizer) and that they have had no lingering effects on his ability to breath.
As far as I know, a lung biopsy should not "cut a hole" in someone's lung. It should remove a large enough sample of the foreign growth for accurate testing - that's all. And even with that, the doctor should only go after a very small (think pinky fingernail size) area of the lung - which would leave nearly all of the lung tissue intact.
Again, I am not a doctor. This was how my dad's doctor explained it to me.
posted by space_cookie at 11:34 AM on November 16, 2009
My dad had to undergo three lung biopsies before his lung cancer could be accurately diagnosed. He said they were quite painless (local anesthetic and a small dose of tranquilizer) and that they have had no lingering effects on his ability to breath.
As far as I know, a lung biopsy should not "cut a hole" in someone's lung. It should remove a large enough sample of the foreign growth for accurate testing - that's all. And even with that, the doctor should only go after a very small (think pinky fingernail size) area of the lung - which would leave nearly all of the lung tissue intact.
Again, I am not a doctor. This was how my dad's doctor explained it to me.
posted by space_cookie at 11:34 AM on November 16, 2009
First, "no cure" does not mean "no treatment." Depending on the etiology of your mom's condition, there are a number of medications that could help. Not to mention, it may not be pulmonary fibrosis at all, but rather a more treatable condition. It's really important that she get this diagnosed.
Second, I would be very cautious about relying on somewhat hysterical (IMHO) blog posts for information. People have a lot of emotional baggage when it comes to this kind of stuff, and it's often easier to blame relatively benign medical procedures for symptomatic worsening than it is to accept that the course of the disease is going downhill, sometimes rapidly. This is not to say that medical procedures can't be dangerous, of course, but it's important to rely on facts rather than on pretty emotionally charged anecdotes when making this kind of decision.
FWIW, a lung biopsy is not "cutting holes into a diseased lung" in the sense that the author of the blog post uses it. Lungs aren't balloons -- they're more like sponges. Biopsies, whether needle, open, or bronchoscopic do not take amounts of tissue that significantly alter lung function. Respiratory function is sometimes worsened by biopsies, particularly open biopsies, which your mom will likely need. However, decline in respiratory function is almost always very short-lived after the procedure, with baseline function returning in days to weeks.
Finally, you don't say whether your mother is concerned about this as well as you. If she's not, you may need to step back a bit and allow her to collaborate with her doctors in making this decision. I don't mean to minimize your feelings about this at all -- it's really scary. But I might respectfully suggest that you might be conflating fear about the disease (which is terrifying) with fear about the biopsy, which is not the major issue here.
posted by LittleMissCranky at 11:49 AM on November 16, 2009 [2 favorites]
Second, I would be very cautious about relying on somewhat hysterical (IMHO) blog posts for information. People have a lot of emotional baggage when it comes to this kind of stuff, and it's often easier to blame relatively benign medical procedures for symptomatic worsening than it is to accept that the course of the disease is going downhill, sometimes rapidly. This is not to say that medical procedures can't be dangerous, of course, but it's important to rely on facts rather than on pretty emotionally charged anecdotes when making this kind of decision.
FWIW, a lung biopsy is not "cutting holes into a diseased lung" in the sense that the author of the blog post uses it. Lungs aren't balloons -- they're more like sponges. Biopsies, whether needle, open, or bronchoscopic do not take amounts of tissue that significantly alter lung function. Respiratory function is sometimes worsened by biopsies, particularly open biopsies, which your mom will likely need. However, decline in respiratory function is almost always very short-lived after the procedure, with baseline function returning in days to weeks.
Finally, you don't say whether your mother is concerned about this as well as you. If she's not, you may need to step back a bit and allow her to collaborate with her doctors in making this decision. I don't mean to minimize your feelings about this at all -- it's really scary. But I might respectfully suggest that you might be conflating fear about the disease (which is terrifying) with fear about the biopsy, which is not the major issue here.
posted by LittleMissCranky at 11:49 AM on November 16, 2009 [2 favorites]
You don't want first-hand accounts. First hand accounts are usually scary, sensationalist, and present an inaccurate portrayal of effects.
I did a quick pubmed search, and this abstract comes up (sadly, the article is in russian, but it is very recent, so is using the most recent techniques):
The aim of the work was to assess the value of biopsy techniques for fibrobronchoscopy under local anesthesia in patients with pulmonary pathology at the prehospital level. It included 706 subjects with lobular, segmental or diffuse lesions in the lungs of specific (tuberculosis), non-specific (pneumonia, exogenous alveolitis), and other origin. All known methods of endobronchial biopsy were employed (bronchoalveolar lavage or liquid lung biopsy, tissue biopsy, transbronchial biopsy, brush biopsy, puncture and aspiration biopsy) with subsequent cytomorphological and bacteriological studies of bioptates. Diagnostic efficiency of direct biopsy was estimated at 97%, transbronchial biopsy at 5-90% depending on nosological form of lung disease, brush and puncture biopsy 20-50 and 6% respectively. Reversible complications occurred in 1.4% and were resolved by therapeutic methods. Cost effectiveness of prehospital instrumental examination of patients with pulmonary pathology is 10 times the intrahospital one.
I don't actually know the medicine here, so if I'm missing something hopefully someone will correct me, but what it looks like is that direct biopsy was 97% effective for diagnosis, and 1.4% of patients had reversible complications. Given that, I would say that yes, it is absolutely worth it.
posted by brainmouse at 12:07 PM on November 16, 2009
I did a quick pubmed search, and this abstract comes up (sadly, the article is in russian, but it is very recent, so is using the most recent techniques):
The aim of the work was to assess the value of biopsy techniques for fibrobronchoscopy under local anesthesia in patients with pulmonary pathology at the prehospital level. It included 706 subjects with lobular, segmental or diffuse lesions in the lungs of specific (tuberculosis), non-specific (pneumonia, exogenous alveolitis), and other origin. All known methods of endobronchial biopsy were employed (bronchoalveolar lavage or liquid lung biopsy, tissue biopsy, transbronchial biopsy, brush biopsy, puncture and aspiration biopsy) with subsequent cytomorphological and bacteriological studies of bioptates. Diagnostic efficiency of direct biopsy was estimated at 97%, transbronchial biopsy at 5-90% depending on nosological form of lung disease, brush and puncture biopsy 20-50 and 6% respectively. Reversible complications occurred in 1.4% and were resolved by therapeutic methods. Cost effectiveness of prehospital instrumental examination of patients with pulmonary pathology is 10 times the intrahospital one.
I don't actually know the medicine here, so if I'm missing something hopefully someone will correct me, but what it looks like is that direct biopsy was 97% effective for diagnosis, and 1.4% of patients had reversible complications. Given that, I would say that yes, it is absolutely worth it.
posted by brainmouse at 12:07 PM on November 16, 2009
bwerdmuller, I'm so sorry.
My dad died of pulmonary fibrosis about two years ago. His breathing had been impaired but livable (he was researching oxygen tanks before he died), but his biopsy led to serious complications that caused his death. (His lung collapsed, they weren't able to "fix" it, and it was all downhill from there, for about a month of on and off hospitalization.)
I don't think my dad's experience was typical (he had other health issues) but a biopsy is surgery, and has the potential for complications.
That said, I agree with LittleMissCranky -- how is your mom feeling about it? Has she gotten a second opinion? Does she feel this is the best course of action?
posted by esperluette at 12:12 PM on November 16, 2009 [1 favorite]
My dad died of pulmonary fibrosis about two years ago. His breathing had been impaired but livable (he was researching oxygen tanks before he died), but his biopsy led to serious complications that caused his death. (His lung collapsed, they weren't able to "fix" it, and it was all downhill from there, for about a month of on and off hospitalization.)
I don't think my dad's experience was typical (he had other health issues) but a biopsy is surgery, and has the potential for complications.
That said, I agree with LittleMissCranky -- how is your mom feeling about it? Has she gotten a second opinion? Does she feel this is the best course of action?
posted by esperluette at 12:12 PM on November 16, 2009 [1 favorite]
Mefi mailed you.
posted by cobaltnine at 12:57 PM on November 16, 2009
posted by cobaltnine at 12:57 PM on November 16, 2009
For what it's worth, I'm an academic pulmonary physician at a center specializing in idiopathic pulmonary fibrosis (IPF, or cryptogenic fibrosing alveolitis as some of you folks across the pond prefer) and lung transplantation.
It's very difficult to answer your concerns because there is a great deal of anecdotal and some published research suggesting that a fraction of patients with pulmonary fibrosis have (potentially life-threatening) exacerbations of their disease following surgical lung biopsy. So your concerns are certainly warranted. At the same time, the procedure is the gold standard for making the diagnosis so the risks have to be carefully weighed against the benefits in the context of the specific patient's condition. In a sizable proportion of patients with this type of lung disease, biopsy is essentially unnecessary if their history and CT scan findings are a slam dunk for the diagnosis. In others, uncertainty exists as to which form (if any) of fibrosis a patient may have, and there are many types -- each with its own prognosis and variable response to treatments. It's in these cases where a biopsy may potentially be helpful in guiding care. So really, you and she are depending on a physician with significant expertise on this subject, and if you haven't done so, I would seek out the opinion of an expert on interstitial lung diseases (the Royal Brompton or if she's up north, perhaps Newcastle -- forgive my ignorance of the NHS if that's not possible).
With respect to treatments short of transplantation, there is indeed, considerable debate about the efficacy of currently used therapies. That said, there is a place for them under certain circumstances, and even the stodgiest IPF world expert would probably agree to that (I know, as I trained under him). As I tell patients quite regularly, this is a rather heterogeneous disease and may not even be one disease at all. Some patients may have a precipitous and aggressive loss of lung function, while others are noted to have incidental fibrosis on a CT they had for other reasons and they never develop symptoms; still others have limitations but have either very stable disease or quite gradual progression over many years. It's probably too early for you and she to be as nihilistic as you suggest about her prognosis and therapies.
It sounds like you and she have been somewhat rushed into the plan of care (biopsy) and may not have had a chance to pick your physician's brain about why the procedure is necessary in her case (as I said, it isn't always). For your peace of mind, I would suggest: (a) finding a pulmonary fibrosis specialist you can trust if you have not yet done so and (b) posing them with the classic medical question -- "how is the result of this biopsy actually going to change my mother's medical care?"
If there's anything else I can do to help or you have any other questions about fibrosis, transplant or in general, feel free to MeMail me.
posted by drpynchon at 3:50 PM on November 16, 2009 [8 favorites]
It's very difficult to answer your concerns because there is a great deal of anecdotal and some published research suggesting that a fraction of patients with pulmonary fibrosis have (potentially life-threatening) exacerbations of their disease following surgical lung biopsy. So your concerns are certainly warranted. At the same time, the procedure is the gold standard for making the diagnosis so the risks have to be carefully weighed against the benefits in the context of the specific patient's condition. In a sizable proportion of patients with this type of lung disease, biopsy is essentially unnecessary if their history and CT scan findings are a slam dunk for the diagnosis. In others, uncertainty exists as to which form (if any) of fibrosis a patient may have, and there are many types -- each with its own prognosis and variable response to treatments. It's in these cases where a biopsy may potentially be helpful in guiding care. So really, you and she are depending on a physician with significant expertise on this subject, and if you haven't done so, I would seek out the opinion of an expert on interstitial lung diseases (the Royal Brompton or if she's up north, perhaps Newcastle -- forgive my ignorance of the NHS if that's not possible).
With respect to treatments short of transplantation, there is indeed, considerable debate about the efficacy of currently used therapies. That said, there is a place for them under certain circumstances, and even the stodgiest IPF world expert would probably agree to that (I know, as I trained under him). As I tell patients quite regularly, this is a rather heterogeneous disease and may not even be one disease at all. Some patients may have a precipitous and aggressive loss of lung function, while others are noted to have incidental fibrosis on a CT they had for other reasons and they never develop symptoms; still others have limitations but have either very stable disease or quite gradual progression over many years. It's probably too early for you and she to be as nihilistic as you suggest about her prognosis and therapies.
It sounds like you and she have been somewhat rushed into the plan of care (biopsy) and may not have had a chance to pick your physician's brain about why the procedure is necessary in her case (as I said, it isn't always). For your peace of mind, I would suggest: (a) finding a pulmonary fibrosis specialist you can trust if you have not yet done so and (b) posing them with the classic medical question -- "how is the result of this biopsy actually going to change my mother's medical care?"
If there's anything else I can do to help or you have any other questions about fibrosis, transplant or in general, feel free to MeMail me.
posted by drpynchon at 3:50 PM on November 16, 2009 [8 favorites]
Response by poster: Thanks all for your wonderful resources, which have both calmed me (and my dad) down, and given me new avenues of research. A couple of you have recommended UK-based medical centers given my location in the UK; actually she's American (as I am), and will be treated in San Francisco.
posted by bwerdmuller at 2:44 AM on November 17, 2009
posted by bwerdmuller at 2:44 AM on November 17, 2009
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posted by Kimberly at 11:24 AM on November 16, 2009