Prolonged radiation pneumonitis, or something else?

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hsbnd
hsbnd Member Posts: 3
edited January 2019 in Radiation Therapy - Before, During, and After

My wife had a lumpectomy followed up with radiation and tamoxifen. A few months after the lumpectomy, she was hospitalized with pneumonia, which was later diagnosed to be radiation pneumonitis. She was then placed on prednisone which controlled the symptoms but she cannot get off it without it the pneumonia symptoms coming back. The doctors are perplexed why it's taking so long and we're worried she's been on it too long. It's been over 8 months and we're looking at over a year with the latest round.

We're in a major city with a really reputable hospital but we're not getting any answers. Can anyone recommend doctors/hospitals or provide guidance on what we can do?

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2019

    hsbnd, we're sorry to hear what you wife is going through. It sounds as though you are probably at a comprehensive cancer center and likely under the management of a pulmonologist and radiation oncologist. Is there a second comprehensive cancer center in your location, for a second opinion?

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  • hsbnd
    hsbnd Member Posts: 3
    edited January 2019

    Thanks for the quick response. Yes, we're in a comprehensive center and being seen by both a pulmonologist and radiation oncologist. We're making some inroads into another comprehensive center in the region for a second opinion. We're hoping the two separately can figure out something.

    We just don't know how prevalent our situation is and was wondering if there are others who may have gone through this. The cancer diagnosis was enough of a shock, but the pneumonitis from the radiation has left a prolonged and significant quality of life stressor. The constant reliance on prednisone now has us worried about the drug's side effects.



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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited January 2019

    You and your wife have my sympathy! I also had radiation pneumonitis and was on prednisone for about six months. I truly know the quality of life issues. My understanding is that it’s about a 1% chance of getting it from rads. Sucks when that 1% is you! Yes, coming off prednisone has to be done extremely slowly and the minute you start to relapse you have to bump back up to the last dose. That did happen to me. Since she is seeing a pulmonologist, I expect they already explained this to you. To be honest, my cough never went away completely. I just live with it. I do not have the shortness of breath though. I was given an asthma inhaler as a precaution, but have not had to use it at all. And yes, the weight comes off eventually and the puffy face goes away.

    Best of luck to her!

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  • hsbnd
    hsbnd Member Posts: 3
    edited January 2019

    Yes, we were told we were in the 1%. I’m hoping this will be the last relapse. The doctors are recommending a much longer taper this time around. Overall it’ll be more than a year that she’ll be on it. Kinda worries about side effects and long term impact

    Can I ask if you encountered chest scans where the pneumonia consolidations seemed to move around over the months, including outside the radiation area? I think for us the biggest uncertainty is whether it’s radiation pneumonitis or something else.

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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited January 2019

    I only had two ct scans, one at the beginning when I was finally diagnosed and one near the end that showed “scarring”.

    If the steroids are helping the symptoms, then it seems likely it’s the correct diagnosis. Initially they had me on antibiotics for possible pneumonia, which did absolutely nothing because I didn’t have pneumonia!

    I think once she gets below 20 mg a day, they’re less concerned about side effects. I know I started noticing a difference when I got below that. The pulmonologist had me on preventative antibiotics until I got below that level to prevent opportunistic infections. Is she also on them?

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