Re: Open Lung Biopsy...or NOT???

[Guest guest]

Joan

Only you can ultimately decide-not us and no doctor so don't let them

pressure you or one unduly influence you. If you need another opinion

from another pulmonologist, get it.

Now, a small clarification. There are two forms of biopsy, a traditional

Open Lung Biopsy and a VATS (Video Assisted Thoracosopic Surgery). Which

were you referring to? Open is done less often today although sometimes

VATS turns into Open. Assuming even a VATS though, it is still a very

invasive surgery.

What do your CT's show? He talks about active infection so I ask what do

blood tests show? Is there still a question as to whether you have an

Interstitial Lung Disease versus something else or is it just to

determine the form of the ILD? Although sometimes the biopsy is

necessary to determine an ILD, generally its more to determine the form.

If you have an ILD or PF, then his referring you to the American Lung

Association isn't going to help, considering they pretty much ignore the

diseases.

Specifically what kind of active infection does he suspect and what

would the treatment be for that? Are there choices of treating without

knowing for sure? Or, would you say no to the treatment regardless? If

you're coughing up colored stuff and he thinks you have an infection,

then why not try a treatment for infection?

An Open Lung Biopsy is major. A VATS isn't minor. It involves pain and

risk. Some have major problems, some have none. I've had pain but not

major problems. However, my oxygen requirements went up immediately

after it and my PFT's went down. Perhaps they would have anyway. Still I

had mine for a specific reason and am glad still that I did as I will

explain.

Some treat any ILD with Imuran and Prednisone. If you're going to do

that and he's certain you have an ILD, then what does the VATS

accomplish toward treatment? Some people aren't going to take Prednisone

regardless so again it doesn't help much there. I had decided that if I

had UIP I was not going to take prednisone. If I had NSIP then I would

probably have tried it. That was my primary reason.

Now, if the question is do you have an ILD, what else does he suspect as

possible? Certainly the treatment for cancer, as an example, would be

very different than for an ILD.

Also, sometimes a biopsy is required for clinical trials. However, at

your age, your eligibility is probably limited and interest may be as

well. Same may apply to your eligibility and/or interest in a

transplant.

Some people simply have a need to know so have a VATS.

Just don't let anyone make you feel you have to rush a decision. You're

enjoying California. Don't stop doing that. Now, another factor in the

decision is the rest of your health and your age. I was pretty healthy

in spite of a lot of other conditions, if that makes sense. Primarily I

had no history of any heart problem. I was also 12 years younger than

you are. I would not have made the choice to have the VATS so easily if

I had your conditions or was your age. Again, at your age and with your

conditions, any consideration I would have given to prednisone would

have dropped even further.

So, I'd strongly encourage fully questioning him on what he saw as all

the possibilities of findings and what you'd do for each one if thats

what was found. If there isn't a real use for the information, based on

the choices you would make, then undertaking any risk to obtain it

becomes questionable.

Under no circumstances would I have the biopsy without an opinion from

another pulmonologist, preferably from a teaching hospital, and

definitely with considerable ILD/PF experience. If any pulmonologist

questions at all your need for a second decision then you need a new

primary pulmonologist too.

As to the not necessarily accurate. The general concensus is that

biopsies are highly accurate in determining what form of an ILD you

have, if its been previously determined you have an ILD. There are

exceptions of course. However, many fewer exceptions now that in a VATS

they take three samples instead of just one. Some of the inaccuracies

are also reduced by having the biopsy read by multiple pulmonologists

including the experts in the field.

Sometimes pulmonologists and other doctors are so intent on diagnosis

and then subsequently on trying even desperate treatment measures they

lose sight of the person. What I see is someone who is making the most

of things right now, functioning pretty well, have oxygen will travel

minded, and is 70 years old with many other conditions. Now, i may be

incorrect in those assumptions.

Some part of a decision is knowing yourself too. Are you a risk taker?

How aggessive in treatment would you go? How do you offset quality

versus quantity of life?

Many people think my current decisions make no sense. But, they do for

me. I have many other conditions which aren't major today but would be

were I to extend life a great deal, especially if I did it through

prednisone. Furthermore, with multiple opinions, I have UIP, for which

there is no convincing evidence prednisone helps. There is some thought

I might possibly have an autoimmune disease, for which prednisone does

help, but there is no convincing evidence of that at this point nor am I

experiencing symptoms of one that are limiting my life.

I have suffered in a major form from mental illnesses and so that scares

me more about prednisone. I also react quite unpredictably and poorly to

any mood altering drug and it is one. But mostly, even if it didn't

directly impact my mood, I am not prepared to deal with the secondary

impact on my mental health and outlook. I already have a list of

conditions a mile long and thats my limit. I know myself well enough to

know that I couldn't deal with more, including those that would come

from prednisone. Furthermore, I'm happy with my life as it is today and

have no desire to mess it up. I don't know how long I have but I feel

certain I will enjoy the next six months at a reasonably good level. On

prednisone, I feel the odds are I would not approach that same

enjoyment. Maybe more time at the end, although doubtful, but not worth

it to me...and I'm only speaking for me. I'm comfortable, although

certainly not pleased about it, with the path I probably face based on

existing illnesses, but don't send me more, please, through a

medication.

Now, the only reason I share all this is to emphasize that you face a

very very personal decision. My choice, my issues, in no way impact your

choice. However, you have to give it the same thought and consideration

and really base it on your knowledge of yourself. Mine has come with

many doctors and with my mental health counselor, who is a godsend, and

my psychiatrist. If facts change, I could change. One doctor can't

understand my choice at all (Rheumatologist). I'm fortunate to have a

very understanding pulmonologist who has gotten to know me and has been

willing to discuss at length.

Good luck in your decision. Keep asking. Go back to the doctor and go to

another and go armed with a long list of questions. Make the decisions

for your life that you're comfortable with. Then just make the most of

them and enjoy as best you can. None of the choices are easy. At least

you're gathering information first and not proceeding on misinformation

as so many find later they've done.

Also, I'd encourage you to use the search feature at the top and enter

VATS and enter biopsy and you'll see many discussions and experiences.

And, both sides of the arguments may be right for the individual. Again,

I shared my prednisone decision. However, I know people who say it

destroyed their lives and people who say it saved their lives. They were

though in different situations and different people so both are perhaps

right.

>

> Hello Friends -

>

> I just saw a CA pulmonologist. From what I've read here and

> elsewhere, having an open lung biopsy is risky...and the value

> depends on your risk vs. info gain from having one. My primary care

> dr. said 'no, they aren't necessarily accurate, subject you to

> unnecessary risks'. When I told the pulmon. dr. that I didn't think

> that I wanted to do that...he asked why (and I told him), he asked me

> to do some research at the American Lung Assoc. and other sites and

> re-consider. He said that doing it would give him information about

> whether or not I have an active infection (I think that I do, as I

> often cough up colored stuff), and what kind of medical treatment to

> pursue.

>

> I'm 70 yrs. old, have coronary artery disease, diab. 2, chronic

> kidney diease in 1 remaining kidney, GERD, hiatal hernia, achalasia,

> two pre-Barrett's esophageal lesions, osteoporosis, arthritis,

> glaucoma...the list goes on...

>

> I was first dx'd. 4/08, put on O2 in Aug 08, no PF meds yet.

>

> Questions? Opinions? Personal experiences?

>

> Joan M. in Northern CA/San

>

[Guest guest]

My biopsy seemed fairrly simple to mel Two small slits in the right back side and a slightly larger opening for what I believe was a suction tube. A small section of the lung was taken through the slits. I was operated on at noon and spent another day and two nights, then discharged. I had no pain and was back to normal life on getting home. The worse part of the whole thing was removing the large patch over the suction hole. Ouch! The outcome was that I had UIP, which I understand is another name for IPF, my diagnosis. I decided on the biopsy because my pulmo did not know which version of IPF I had and I wanted to know.

Jack79/IPF - UIP/dx06/05 Maine

Open Lung Biopsy...or NOT???

Hello Friends -I just saw a CA pulmonologist. From what I've read here and elsewhere, having an open lung biopsy is risky...and the value depends on your risk vs. info gain from having one. My primary care dr. said 'no, they aren't necessarily accurate, subject you to unnecessary risks'. When I told the pulmon. dr. that I didn't think that I wanted to do that...he asked why (and I told him), he asked me to do some research at the American Lung Assoc. and other sites and re-consider. He said that doing it would give him information about whether or not I have an active infection (I think that I do, as I often cough up colored stuff), and what kind of medical treatment to pursue.I'm 70 yrs. old, have coronary artery disease, diab. 2, chronic kidney diease in 1 remaining kidney, GERD, hiatal hernia, achalasia, two pre-Barrett' s esophageal lesions, osteoporosis, arthritis, glaucoma...the

list goes on...I was first dx'd. 4/08, put on O2 in Aug 08, no PF meds yet.Questions? Opinions? Personal experiences?Joan M. in Northern CA/San

[Guest guest]

Hi Joan, I have IPF/UIP and was ask to have a biopsy shortly after Dx. My daughter ask HOW that would change my treatment.. not at all. I was Dx by HRCT. honeycombing and scaring were very clear. We are so susceptible to infections and that is such an invasive surgery. It doesn't have a good enough track record for me to have tried it.So I would ask how it would change your treatment. AND If you were his or her Mother would they do it. Please consider all your other medical problems also..God Bless you and give you strength.  Love  & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Hello Friends -I just saw a CA pulmonologist. From what I've read here and elsewhere, having an open lung biopsy is risky...and the value depends on your risk vs. info gain from having one. My primary care dr. said 'no, they aren't necessarily accurate, subject you to unnecessary risks'. When I told the pulmon. dr. that I didn't think that I wanted to do that...he asked why (and I told him), he asked me to do some research at the American Lung Assoc. and other sites and re-consider. He said that doing it would give him information about whether or not I have an active infection (I think that I do, as I often cough up colored stuff), and what kind of medical treatment to pursue.I'm 70 yrs. old, have coronary artery disease, diab. 2, chronic kidney diease in 1 remaining kidney, GERD, hiatal hernia, achalasia, two pre-Barrett's esophageal lesions, osteoporosis, arthritis, glaucoma...the list goes on...I was first dx'd. 4/08, put on O2 in Aug 08, no PF meds yet.Questions? Opinions? Personal experiences?Joan M. in Northern CA/San

[Guest guest]

Thanks for the input...Bruce and Peggy. I had already done some

research and didn't think I wanted to do...but was seeking additional

input from those of you who have 'been there, done that'. Especially

when the doctor wants me to 're-consider' my decision/statement that

I don't want one. I asked him the same things about how it will help

or affect my disease...he said that since I appear to have an ongoing

infection, it would help him know which meds are best to be used to

treat me/my IPF (was diagnosed by Duke U. Hosp. in NC, XRays, HRCT,

manometries (checking the acidity/infection in my esophaegus), etc.

I, of course, brought the films and copies of all my pertinent med.

records with me to CA in Aug.

When I saw my pri. care dr. yesterday, she concurred with my not

wanting to do the open lung biopsy. And while I appreciate and value

the input of my doctors and you friends, I will be the one who has to

make and live with the decisions about this. It is just so much to

learn about and deal with...but I'm managing and have a lot of

support!

He is scheduling me for pul. rehab, got me new lighter, easier to

carry/use O2 equip...a concentrator and a Respironics small portable

(about the size of a med/sm. purse and much lighter and easier to

transport).

Again, thank you for your support.

Joan in CA

[Guest guest]

Joan

Well, in the case of our disease and many others there are no absolutes,

which doctors struggle with that fact. Their job is to advise so we can

decide, not to order.

It also seems to me that in spite of everything you're living a pretty

full life. I'm glad you're getting rehab and different oxygen equipment

if it helps. Did you change suppliers and if so, how has that worked?

Some day when you're back in NC and I'm there we'll pull up our vans,

unload our chairs, and have a race or head somewhere and see which of us

can run over the most people. You know, I just thought of something too

that may apply to many of us.

I will deal with the disease and each stage as it comes. I know I can't

beat it. However, I'm not going to let the diagnosis or the future

expectations beat me today. I'm not going to stop living until I have no

choice. When I get up each day I'm simply going to deal with how I feel

today, not how I may feel in the future. Unfortunately, there are many

who find no support and little information and the diagnosis of the

disease kills them long before the disease does. I'm so happy I have

such great role models here who every day just be being here mentor me

and prepare me for each stage.

>

> Thanks for the input...Bruce and Peggy. I had already done some

> research and didn't think I wanted to do...but was seeking additional

> input from those of you who have 'been there, done that'. Especially

> when the doctor wants me to 're-consider' my decision/statement that

> I don't want one. I asked him the same things about how it will help

> or affect my disease...he said that since I appear to have an ongoing

> infection, it would help him know which meds are best to be used to

> treat me/my IPF (was diagnosed by Duke U. Hosp. in NC, XRays, HRCT,

> manometries (checking the acidity/infection in my esophaegus), etc.

> I, of course, brought the films and copies of all my pertinent med.

> records with me to CA in Aug.

>

> When I saw my pri. care dr. yesterday, she concurred with my not

> wanting to do the open lung biopsy. And while I appreciate and value

> the input of my doctors and you friends, I will be the one who has to

> make and live with the decisions about this. It is just so much to

> learn about and deal with...but I'm managing and have a lot of

> support!

>

> He is scheduling me for pul. rehab, got me new lighter, easier to

> carry/use O2 equip...a concentrator and a Respironics small portable

> (about the size of a med/sm. purse and much lighter and easier to

> transport).

>

> Again, thank you for your support.

>

> Joan in CA

>

[Guest guest]

Hi Joan ... I just turned 70 and I'm one who decided NOT to have any lung bio...too many other health issues and my age.

I'm popping in here to say Bruce posts to you such valuable information to consider. He is always on the spot with good info for us all.

God Guide you.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Open Lung Biopsy...or NOT???

JoanOnly you can ultimately decide-not us and no doctor so don't let thempressure you or one unduly influence you. If you need another opinionfrom another pulmonologist, get it.Now, a small clarification. There are two forms of biopsy, a traditionalOpen Lung Biopsy and a VATS (Video Assisted Thoracosopic Surgery). Whichwere you referring to? Open is done less often today although sometimesVATS turns into Open. Assuming even a VATS though, it is still a veryinvasive surgery.What do your CT's show? He talks about active infection so I ask what doblood tests show? Is there still a question as to whether you have anInterstitial Lung Disease versus something else or is it just todetermine the form of the ILD? Although sometimes the biopsy isnecessary to determine an ILD, generally its more to determine the form.If you have an ILD or PF, then his referring you to the American LungAssociation isn't going to help, considering they pretty much ignore thediseases.Specifically what kind of active infection does he suspect and whatwould the treatment be for that? Are there choices of treating withoutknowing for sure? Or, would you say no to the treatment regardless? Ifyou're coughing up colored stuff and he thinks you have an infection,then why not try a treatment for infection?An Open Lung Biopsy is major. A VATS isn't minor. It involves pain andrisk. Some have major problems, some have none. I've had pain but notmajor problems. However, my oxygen requirements went up immediatelyafter it and my PFT's went down. Perhaps they would have anyway. Still Ihad mine for a specific reason and am glad still that I did as I willexplain.Some treat any ILD with Imuran and Prednisone. If you're going to dothat and he's certain you have an ILD, then what does the VATSaccomplish toward treatment? Some people aren't going to take Prednisoneregardless so again it doesn't help much there. I had decided that if Ihad UIP I was not going to take prednisone. If I had NSIP then I wouldprobably have tried it. That was my primary reason.Now, if the question is do you have an ILD, what else does he suspect aspossible? Certainly the treatment for cancer, as an example, would bevery different than for an ILD.Also, sometimes a biopsy is required for clinical trials. However, atyour age, your eligibility is probably limited and interest may be aswell. Same may apply to your eligibility and/or interest in atransplant.Some people simply have a need to know so have a VATS.Just don't let anyone make you feel you have to rush a decision. You'reenjoying California. Don't stop doing that. Now, another factor in thedecision is the rest of your health and your age. I was pretty healthyin spite of a lot of other conditions, if that makes sense. Primarily Ihad no history of any heart problem. I was also 12 years younger thanyou are. I would not have made the choice to have the VATS so easily ifI had your conditions or was your age. Again, at your age and with yourconditions, any consideration I would have given to prednisone wouldhave dropped even further.So, I'd strongly encourage fully questioning him on what he saw as allthe possibilities of findings and what you'd do for each one if thatswhat was found. If there isn't a real use for the information, based onthe choices you would make, then undertaking any risk to obtain itbecomes questionable.Under no circumstances would I have the biopsy without an opinion fromanother pulmonologist, preferably from a teaching hospital, anddefinitely with considerable ILD/PF experience. If any pulmonologistquestions at all your need for a second decision then you need a newprimary pulmonologist too.As to the not necessarily accurate. The general concensus is thatbiopsies are highly accurate in determining what form of an ILD youhave, if its been previously determined you have an ILD. There areexceptions of course. However, many fewer exceptions now that in a VATSthey take three samples instead of just one. Some of the inaccuraciesare also reduced by having the biopsy read by multiple pulmonologistsincluding the experts in the field.Sometimes pulmonologists and other doctors are so intent on diagnosisand then subsequently on trying even desperate treatment measures theylose sight of the person. What I see is someone who is making the mostof things right now, functioning pretty well, have oxygen will travelminded, and is 70 years old with many other conditions. Now, i may beincorrect in those assumptions.Some part of a decision is knowing yourself too. Are you a risk taker?How aggessive in treatment would you go? How do you offset qualityversus quantity of life?Many people think my current decisions make no sense. But, they do forme. I have many other conditions which aren't major today but would bewere I to extend life a great deal, especially if I did it throughprednisone. Furthermore, with multiple opinions, I have UIP, for whichthere is no convincing evidence prednisone helps. There is some thoughtI might possibly have an autoimmune disease, for which prednisone doeshelp, but there is no convincing evidence of that at this point nor am Iexperiencing symptoms of one that are limiting my life.I have suffered in a major form from mental illnesses and so that scaresme more about prednisone. I also react quite unpredictably and poorly toany mood altering drug and it is one. But mostly, even if it didn'tdirectly impact my mood, I am not prepared to deal with the secondaryimpact on my mental health and outlook. I already have a list ofconditions a mile long and thats my limit. I know myself well enough toknow that I couldn't deal with more, including those that would comefrom prednisone. Furthermore, I'm happy with my life as it is today andhave no desire to mess it up. I don't know how long I have but I feelcertain I will enjoy the next six months at a reasonably good level. Onprednisone, I feel the odds are I would not approach that sameenjoyment. Maybe more time at the end, although doubtful, but not worthit to me...and I'm only speaking for me. I'm comfortable, althoughcertainly not pleased about it, with the path I probably face based onexisting illnesses, but don't send me more, please, through amedication.Now, the only reason I share all this is to emphasize that you face avery very personal decision. My choice, my issues, in no way impact yourchoice. However, you have to give it the same thought and considerationand really base it on your knowledge of yourself. Mine has come withmany doctors and with my mental health counselor, who is a godsend, andmy psychiatrist. If facts change, I could change. One doctor can'tunderstand my choice at all (Rheumatologist). I'm fortunate to have avery understanding pulmonologist who has gotten to know me and has beenwilling to discuss at length.Good luck in your decision. Keep asking. Go back to the doctor and go toanother and go armed with a long list of questions. Make the decisionsfor your life that you're comfortable with. Then just make the most ofthem and enjoy as best you can. None of the choices are easy. At leastyou're gathering information first and not proceeding on misinformationas so many find later they've done.Also, I'd encourage you to use the search feature at the top and enterVATS and enter biopsy and you'll see many discussions and experiences.And, both sides of the arguments may be right for the individual. Again,I shared my prednisone decision. However, I know people who say itdestroyed their lives and people who say it saved their lives. They werethough in different situations and different people so both are perhapsright.>> Hello Friends ->> I just saw a CA pulmonologist. From what I've read here and> elsewhere, having an open lung biopsy is risky...and the value> depends on your risk vs. info gain from having one. My primary care> dr. said 'no, they aren't necessarily accurate, subject you to> unnecessary risks'. When I told the pulmon. dr. that I didn't think> that I wanted to do that...he asked why (and I told him), he asked me> to do some research at the American Lung Assoc. and other sites and> re-consider. He said that doing it would give him information about> whether or not I have an active infection (I think that I do, as I> often cough up colored stuff), and what kind of medical treatment to> pursue.>> I'm 70 yrs. old, have coronary artery disease, diab. 2, chronic> kidney diease in 1 remaining kidney, GERD, hiatal hernia, achalasia,> two pre-Barrett's esophageal lesions, osteoporosis, arthritis,> glaucoma...the list goes on...>> I was first dx'd. 4/08, put on O2 in Aug 08, no PF meds yet.>> Questions? Opinions? Personal experiences?>> Joan M. in Northern CA/San >