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Pulmonary Fibrosis / lung scarring after Rads???

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Comments

  • ratherbesailing
    ratherbesailing Member Posts: 118
    edited April 2022

    Simone, the really scary pulmonary fibrosis is the idiopathic type, which has no known cause and a poor prognosis. But the fibrosis many get from radiation tends to be stable. So if you haven't had any symptoms for the past 20 years you should be fine.

  • simone60
    simone60 Member Posts: 952
    edited April 2022

    Thanks for your reply ratherbesailing. That is good to hear.

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited May 2022

    Simone, I developed pneumonitis after radiation and was referred to a pulmonologist very early on. The pulmonologist first followed me with chest CTs every six months which have shown the progression to fibrosis. After he felt it was stable I dropped down to annual visits. Next year he said we will only do x-rays instead of CTs. So he's not that concerned about it as long as there are no changes.

  • maggie15
    maggie15 Member Posts: 846
    edited May 2022

    Simone, my pulmonologist told me that radiation induced pulmonary fibrosis stabilizes two and a half years after rads in 80% of the few bc patients who develop it so you should be in the clear now. He started me on prednisone since the fibrosis was spreading outside the radiation port but tapered me down after I developed a jawbone infection. I'm now on the max dose of inhaled Flovent and my breathing and cough seem to be no worse than they were on the oral pills. I'll find out when I have my next CT and PFTs at the end of the month. My doctor has had a few bc patients go the way of those with IPF, but our odds are much better.

  • cowgal
    cowgal Member Posts: 625
    edited May 2022

    Thanks for that information Maggie. My scans always show the radiation damage to my lungs but I didn’t know that it should stabilize after 2 1/2 years. I’m about 2 years and 2 months out from my last radiation so hopefully mine will stabilize too.

    I have not seen a pulmonologist for my lung fibrosis and it was never mentioned by my MO to see one. I just assumed it is what it is and nothing could be done to help it. For those that have seen a pulmonologist, is there something that triggered a need to see a pulmonologist? Is there something that you’ve learned that you think would be helpful for others with radiation induced lung fibrosis to know?

  • maggie15
    maggie15 Member Posts: 846
    edited May 2022

    About 5 months after rads I developed a persistent dry cough, low grade fever and shortness of breath. My PCP heard crackles with the stethoscope and sent me for an x-ray since I was negative for covid and flu. She (and the radiologist) assumed I had pneumonia since there was consolidation in my right lung. After two rounds of antibiotics which did nothing and a second x-ray which showed worsening consolidation she ordered a CT since she was worried about lung mets. The scan showed consolidation and fibrosis in my lower right and middle lung; the radiology report mentioned that the damage "followed artificial linear rather than anatomical boundaries" which set off the alarm bell in my head. I sent my RO a copy of the scan, and he referred me to a pulmonologist who specializes in interstitial lung disease. My RO told me that my "pneumonia" was radiation pneumonitis and if I had contacted him when the cough began he would have prescribed a two week course of prednisone which would probably have cleared it. Once the fibrosis occurs there is nothing that can be done to cure it; the goal becomes keeping it from spreading. Some people get radiation pneumonitis that clears on its own, and some people develop radiation induced pulmonary fibrosis with no pneumonitis symptoms.

    The pulmonologist told me that there are three general scenarios: the fibrosis stays in the radiation port, it migrates within the affected lung (as mine is now doing) or it migrates to the other lung as well (which is eventually fatal.) There is no way of knowing what will happen, but in 80% of cases it stays in the lung exposed to radiation so you have at least one working lung. Prednisone is used to stop the inflammation which leads to the uncontrolled fibrotic process, but the long term doses required have some pretty serious side effects: lack of immunity, diabetes, severe osteoporosis, eye disease and some less serious ones including insomnia, swelling and weight gain. I ended up with jawbone bone loss/infection and lost three teeth, so I am off the oral prednisone and am using Flovent, an inhaled corticosteroid. Hopefully that will stop the progression and I won't have to go back on the oral meds. In 80% of cases the fibrotic process stops and the lungs stabilize 2 1/2 years after rads is completed. If the fibrosis progresses to the other lung, the IPF drug OFEV can now be prescribed to slow down any "progressive fibrotic pulmonary disease."

    People with ILD or an autoimmune disease like RA or sarcoidosis should not do rads as they are much more likely to get radiation fibrosis. I asked the pulmonologist "Why me?" and he pointed to the severe upper GI bleed from 4 years ago in my medical record and the resulting diagnosis of Barrett's esophagus due to non-symptomatic GERD. There seems to be a strong association between micro aspiration of stomach acid from GERD and ILD even though nobody has been able to show a cause/effect relationship yet. He thinks I had subclinical ILD and therefore reacted badly to the radiation. Also, more of my lung was in the radiation port because the RO was trying to avoid my esophagus.

    It's amazing what you end out learning along the way. If anyone has lung fibrosis which causes symptoms such as the horrible dry cough or lowered oxygen levels, they should find a pulmonologist who specializes in ILD since they have plenty of experience dealing with restrictive lung diseases (as opposed to obstructive lung diseases like COPD and cystic fibrosis which are much more common.)

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited May 2022

    Cowgal, my experience is similar to Maggie's. I developed a cough and shortness of breath about 4 months after rads. I reported this to my MO who ordered a chest x-ray that showed consolidation in my lung. Thinking I possibly had pneumonia, I was put on antibiotics and a CT was ordered. These results were sent to my RO. My RO said it was radiation pneumonitis and he was concerned because it had spread out of the radiation field. He prescribed some oral prednisone and referred me to a pulmonologist. The pulmonologist prescribed me an inhaler which I used for about a year or so until I decided I didn't want to use it anymore. This was me trying to reduce the number of medications I was taking and because after about a year everything seemed to have calmed down. I continued to see him for CT's and pulmonary function tests every six months until last year, at which time we dropped it to once a year. I have a stable linear scar that matches the radiation field and a solitary nodule that he is keeping an eye on.

    Maggie your information on ILD and GERD was very interesting. I had an endoscopy the year following radiation because of irritation in my esophagus and trouble swallowing. He noted a lot of irritation that he thought could be from radiation, since he didn't really see evidence of GERD.

    I have also wondered why I seem to have more effects from the radiation than some others do. I had bad skin reactions during rads and wonder if there is a connection. As far as autoimmune disorders, I have an autoimmune thyroid disease, but that's about it. I've been tested for others but they have come back negative.

    Cowgal, I would ask your MO to refer you to a pulmonologist. While your MO can order scans to monitor your fibrosis, it would be a good idea to have some baseline pulmonary function tests in case your condition worsens down the road.

  • cowgal
    cowgal Member Posts: 625
    edited May 2022

    Maggie15 and whatjusthappened - Thank you so much! I am a stage 4 patient so I get scans every 6 months now and just had bone and CT scans a couple of weeks ago. I am scheduled to meet with my MO this Wednesday to go over the scans and I will ask him about this. I would think they could look over my scans over the years and be able to see if the radiation damage to my lungs has stabilized.

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited May 2022

    Cowgal, I think that is a good idea. Any pulmonary changes should be well documented if you are scanned every six months. If you're not having symptoms your MO may not feel a pulmonology visit is warranted, but it doesn't hurt to ask. I hope your MO appt goes well!