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radiation pneumonitis
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radiation pneumonitis

Hi,
I have just finished an intense course of radiation therapy  for left breast cancer. This included the supraclavicular field too. I now have been diagnosed with a radiation pneumonitis/pneumonia and have been given a month long course of prednisone and 10 days of antibitocs. Is lung fibrosis and damage inevitable for me now and will this become a recurrant problem?
Thank you
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Avatar_n_tn
Dear athena126:  Radiation damage depends upon the fields of radiation as well as the amount of radiation given.  Radiation pnuemonitis/pneumonia indicates an acute inflammation with infection.  It does not necessarily mean long term problems, although this is a possibility.
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I also developed radiation pneumonitis about 4 1/2 years ago after completing radiation treatment.  I have not had any problems since then.  I do have mild asthma so I suppose if there was some lingering effects it is possible I may not be aware of them since I occasionally have breathing issues from the asthma.
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Avatar_n_tn
I developed symptomatic radiation pneumonitis early in the fourth week of radiation therapy, only the radiation oncologist refused to accept that radiation was the cause, even after everything else was ruled out. They continued with four additional weeks of radiation therapy despite the fact that the symptoms were worsening. I was too wrapped up in the treatment schedule to step back and refuse to go on myself, and none of my other doctors stopped the train either. It is unusual to have symptoms that early in the game, more often if there are symptoms at all they will develop during the first few months after therapy is completed.

It took at least three years and an open lung biopsy before everything stabilized. There was nothing ever found that indicated any other problem could have caused the damage. I'm left with hyperreactive airways and restrictive lung damage, which means that I have fibrosis (scarring) in the irradiated area and stiff lung tissue all through my lungs. I get short of breath with the least exertion, and I now have asthma as well, even though I don't have allergies. I was an RN, so I immediately looked for anything I could find about what was happening, but not that much was available at the time online (it was 1994-5). I found more in older textbooks, since the problem was more recognized when older equipment was used. Current books at that time generally gave only a passing mention, and didn't prepare me at all for what I went through.

Not only the time of onset of symptoms but also the degree of symptoms and the recovery period are highly individual. There is also little correlation between the degree of symptoms and x-ray findings, which helps some physicians deny what the patient is experiencing. I was fortunate to have a good pulmonologist who was old enough to have seen it before and didn't (after the beginning, anyway) try to imply it was "all in my head."

I want to stress that my experience was much more extreme than what most people experience. However, it can happen, and it doesn't always follow the "textbook rules"  of timing and degree of disability during and after the pneumonitis resolves into the chronic fibrosis stage. Many people have no symptoms or residual disability at all, I just wasn't that lucky!

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Avatar_n_tn
Gosh, I was so struck by the last post.  I too, have been having quite a time with post radiation problems.  It's been a month since radiation stopped.  I had hodgkins 2A and had chemo til JUly and then radiation from Aug 28 to Sept 28.  I saw the radiation oncologist once a week and did tell him about an increasing cough, shortness of breath and some minor chest pain.  It was not considered important.  As radiation ended my cough, shortness of breath, and chest pain increased dramatically until I couldn't sleep, walk up stairs, etc.  The shortness of breath was scary.  I think I made about six trips down to the radiation oncologist in six days with two regualr xrays that showed this "merkie" stuff.  I guess I complained so much they tried zpak and and inhaler...didn't work.  I was taking ativan at night just to sleep, because any deep breathing immediately woke me up. Long story short, I had a CAT scan Monday night that was compared with an older cat done after chemo.  I have radiation burns to the inner aspects of both lungs.  Also both lungs are damaged on the apex and lower lobes.  Im currently on 60mg of predisone, nexium, bactrim, and ativan.  The pulmonary specialist who saw me today was great, but makes no promises.  I had radiation done as a backup hoping not to relapse again into hodgkins.  If you have any suggestions please don't hesitate in mailing.  thanks rose
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