Tagged: 

Viewing 9 reply threads
  • Author
    Posts
    • #30427
      Martha McAdams
      Participant

      Hello all…. I have recently been diagnosed with IPF. Have had ct scan, hrct, pft, 2 loop volume tests. Met with rheumatologist and all underlying autoimmune diseases ruled out. Hence the dx of IPF. I have no symptoms whatsoever. Hrct shows honeycombing. Yesterday my pulmonologist ( at Loyola) surprised me with recommendation for a lung biopsy. I don’t understand why I would need that if it’s IPF? I know I should have asked him but I was so stunned about it I couldn’t think straight. Wondering if any of you have this sane experience? I appreciate your feedback

       

    • #30436
      Christie
      Moderator

      Hi Martha, a lung biopsy would be to get a definitive confirmation of the diagnosis of IPF. Several things can appear to be IPF on CT scans–hypersensitivity pneumonitis, other interstitial lung diseases. A biopsy isn’t pleasant, but having a for-sure dx could bring peace of mind. I think @donsalzbergmd is an advocate for going it from his experience. You will find others in the forums who would advise against it… ultimately it’s up to you and your doctor.

    • #30468
      Catherine Leonard
      Participant

      Martha,

      Not knowing what part of the country you are in or health care options available I’m not sure this will be helpful, but this may be of interest.

      Having had two lung biopsies the traditional way (needle through back into lung), and a robotic bronchoscopy/biopsy, I would ask if it is possible to secure the latter.  The Robotic Bronchoscopy/Biopsy does not pierce the lungs (goes through the throat) and is safer than standard biopsy.  It can also go deeper into lungs than standard bronchoscopy and be directed to a specific site.  I had never heard of this until receiving care from City of Hope in Southern California for dual issues: lung cancer/nodule and IPF.  It was pretty amazing and doctor reported he was able to secure several good samples directly from targeted area in my lower right lung.

      Catherine

    • #30478
      Jofac O’Handlin
      Participant

      Hi Martha,

      Like you, I had a preliminary diagnosis of IPF by X-ray and CT scan. That was in  August 2013. Under the NHS system in tne UK, referrals and consultatios tend to proceed at a pedestrian pace. I was offered a biopsy about a year later.

      I was, as you are, faced with the choice of  leaving well alone (acceting the diagnosis) or going for an invasive procedure with the attendant risks. It was put to me that there is a family of lung issues under the expression IPF. As I like ‘to know’, and on the retional that I would add a miniscule amount to the knowledge of the disease. It would also confirm if the the IPF was associated with exposure to asbestos, having worked as a young man in power stations. I decided to have the procedure,  a so called wedge section. This took place in December 2014. My results confirmed in March 2015 indicated the worst of the apparant several options, but no asbestosis.

      I will also say that I may have a genetic propensity for IPF, as an older sister died of the complaint at the age of 85.

      I was then prescribed OFEV (Nintedanib), which I have taken for over six and a half years. My physical abilities have slowly declined over the years, and whilst I have oxygen prescribed I am able to proceed with only occasional O2 use.

      This may not be helpful, but it is my story, so far!

      All the best,

      Joe

    • #30481
      Linda Maguire
      Participant

      Martha,

      As stated by other participants, a biopsy is to confirm that you actually have IPF & not something else.  I underwent a lung biopsy in 2016 and didn’t find it too difficult, however I believe there may be a less invasive procedure available.  If you are otherwise healthy, the recovery is fairly rapid.  You might check with your pulmonologist whether there is a newer procedure that would confirm a diagnosis of IPF without the traditional surgical biopsy.  I, too, have no symptoms other than a chronic cough and have been stable for the past 6 years.  Best of luck!

      Linda

    • #30486
      john styles
      Participant

      I say no, first if the ct scan is read by a radioligist who specializes in lung disease the biopsy is usually not needed. A lung biopsy can turn into a thoracodomy ( a real nightmare ) when there is plural disease around the lungs not picked up on the ct scan. A world class lung doctor told me after the biopsy when reviewing my records that he would have not done the biopsy.

    • #30492
      Mark
      Participant

      Martha

      when I was first diagnosed with ILD and PF, the polumnologist in Tucson wanted to do a full open lung biopsy.  I did a lot of research and talked to a few who had been through such, then asked this question

      why would I agree to have my chest cut into, my lungs cut into in multiple places, to get a scraping to verify the diagnosis, oh and the treatment would not change with or without the biopsy, not to mention I now have had my already damaged and compromised lungs, even more compromised, and add in a higher level of infection.

      my polumnologist here in St Louis asked me why one would do such?  He would do fine needle or robotic if cancer was in the game, but the newer high res CT scans can pretty much do the same as  a biopsy

      as everyone who has replied here, it is a discussion and decision that, in my view point needs to be talked about with your full medical team.

      as of now 6+ years later I still only get the ct scans twice a year.  Though this may change as I progress through the disease

    • #30494
      Regina Bolyard
      Participant

      Why not get a second opinion? It may be that you don’t present with all the classic features of IPF. Have you asked your doctor exactly why they want surgical biopsy? I will share my experience as an example:

      Honeycombing was not visible on my HRCT and I had an atypical amount of upper lung involvement. I also had a history of environmental exposures that are connected to HP. So I decided to go through VATS biopsy. That made it possible to rule out many pathologies. The amount of tissue collected via bronchoscopy or needle biopsy is usually pretty small. That limits the number of tests that can be done. Both the aforementioned methods of biopsy come with risks too. I didn’t want to go through either and have to ultimately have surgical biopsy anyway.

      Best wishes,

      Regina

      • #30498
        Marilyn Cellucci
        Participant

        Regina,

        I don’t have all of the classic symptoms of IPF, many odd ones. My pulmonologist thought that doing a biopsy would not be worth it since the biopsy would be atypical and not show anything useful. It is a mute point for me since I am being treated as though I have IPF anyway.

        Marilyn

         

    • #30497
      Nina Merendino
      Participant

      I have had a lung biopsy through my traechea where they took samples. Doctor still cant decide if I have IPF or UIP. I have no symtoms yet like cough or shortness of breath. I have ankylosis spondilitis, and fibromialgy. I had the test that goes through your nose and diagnoses GERD which I have. He still wants me to have a VAT? lung biopsy but frankly I don’t see doing yet with no symtoms. I swim and do water aerobic 30 minutes a day. My O2 is normal. So what do you ALL THINK?

      • #30503
        Linda Maguire
        Participant

        Nina,

        There are two types of IPF.  One is UIP (Usual Interstitial Pneumonia) and the other is NSIP (Non-specific Interstitial Pneumonia).  UIP has a less favorable outcome, but both are IPF & usually treated the same.  Were you thought to have IPF based on an HRCT  scan?

    • #30526
      Randy
      Participant

      Hello everyone and hope your Thanksgiving was a great family day. The talk hereon biopsy is something I know a little about. Back in March of 2020, I was in the hospital for what they thought was Covid. After 3 months of being tossed from one hospital to the next, I finally landed in one that actually had an inkling to what may be wrong with me. The surgeon came to see me after getting checked in, took one look and said I know what you problem is. After some xrays she sheduled a biopsy. This was he first time I had seen my wife in over 3 months. They thought it was best if she was there because of my heart problems. Was a good thing they did, I died but thank God, I was revived. She went thru my right rib cage with a 1″ hole and took out a 4″ piece of what was left of my right lung. That was what the surgeon had seen in the xrays was the right lung pretty much not there. They kept part of the lung to study themselves and sent the rest to Mayo Clinic. It took a whole to get the results back, but they determined it was IPF.  So yes, I would saw yes on a biopsy, that way they will know for sure. I have been on 24/7 oxygen and trying to be normal.

Viewing 9 reply threads
  • You must be logged in to reply to this topic.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account