The biopsy question

[Guest guest]

Bruce just gave a really good overview of how the feelings run regarding biopsy. It's a very subjective decision and everyone has to sort through the options and decide what's best for them.

I had my biopsy in June of 06. Started out to be a VATS ended up being an OLB because I had major issues with anesthesia and problems with intubation that no one expected. I spent several days in ICU but once I was home and my stiches were out I've had no further problems from the biopsy.

Honestly I think those that regret the biopsy the most are those that went through it and don't feel they gained any useful information. As difficult as my experience was, I would do it again without hesitation. I learned that I had fibrotic nsip, not uip/ipf. That changed my prognosis significantly and provided information on what treatment might help.

It's different for everyone, there is no right or wrong answer. Discuss with your doctor, read all the information ane then decide what will work for you.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thu, January 7, 2010 1:35:56 PMSubject: Re:lots of stomach problems

PattiPeople have many different experiences with VATS. Some have absolutely no problems. Some have extensive problems. In the middle are those who spend three or four days in the hospital, go home, do fine, but do have some residual pain for a period of time. The problem is some doctors make it seem like nothing. I think thats because as Thoracic surgery goes its a relatively simple procedure. If you compare it to open heart surgery it is minor. But, it is a very invasive procedure. When they go in and start taking pieces of my organs it's a significant surgery to me. And for many it does have some residual pain.As to measuring any worsening in PFT's as a result, thats really hard to do. First, there is obviously some short term impact because of any pain one might be experiencing. Second, over any period of longer time, who is to know what otherwise might have been experienced. So, I encourage people to read all sides.

But the key to me is understanding why you're doing it and what you're going to do with the information gathered. I knew that for me. In my case if I had UIP/IPF then I wasn't going to take meds. If I had NSIP then I would have taken some. So, as a result of knowing exactly what I wanted to find out and how I'd use the information, I consider mine worthwhile. Now, was it easy and simple? No. I had various issues, some that only I would have incurred related to anesthesia. Others typical, related to the site pain. But, I am glad I had the VATS. The doctors needed that information to feel any certainty on what I have. I have used that information to guide my treatment choices. I did come to this forum and read before I had mine. There were several at that time vocal in opposing them, some who had had one and some who hadn't. But there were others who had them and recommended them. I sorted through it all to figure out what was right for me. Right

now the forum has just seen several who say they wish they hadn't. But let me assure you that the mood of reactions toward it comes and goes and during another period of time you might see a predominance of those who are glad they had it or thought there was nothing to it. The truth lies in all the responses and somewhere between the views to both extremes. >> Tina, and ,> > I was wondering what kind of biopsy you all had that you have been having such problems.... .was it the VATS biopsy or the open lung? The doctor at U of Chicago said we will discuss that when I return in Feb......I think I am getting worried again.> > Patti Indianapolis IPF

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