Radiation Induced BOOP

BOOP is Bronchiolitis Obliterans Organizing Pneumonia, actually now called COP (Cryptogenic Organizing Pneumonia) by pulmonologists. Most folks who get this disease (it falls into the lung inflammation arena, similar to Hyposensitivity Pneumonitis which is a side effect from radiation therapy). It has nothing to do with cancer or breast cancer, mine was a result to exposure to black mold in 2000, diagnosed through open lung biopsy. Treatment, massive doses of steroids for almost a year, in my case to remove a nodule for biopsy, then massive intravenous steroids to resolve other nodule. BOOP has been waxing and waning ever since (small part of the BOOP population have waxing and waning, most folks clears up with steroid therapy). My triggers are environmental exposures (petroleum-based chemicals, cleaning products, car exhaust, new construction, paint, printers ink, even the "new car" smell, the list is long). I have managed it well, a few hospitalizations with IV steroids to reverse the issues, which is very hard on the body. Each flare takes a significant hit to the lungs, most often leaves scarring which can lead to lung fibrosis which is irreversible and extreme fatigue. The goal, limit flares by limiting exposures and respiratory illnesses. Also have a primary immune disease - CVID (Common Variable Immune Disorder). The radiation oncologist, after identifying the statistics and all the "whys" of having radiation therapy, suddenly got cold feet, and said here are your five choices (everything from a mastectomy, then various radiation treatments, all the way to doing nothing and said "I could decide." I'm not qualified to do that. Today, she called back to say she had discussed with her colleagues on a national board, and their consensus was to do nothing, but just watch, wait, and evaluate so as not to complicate the lung issues and to not further complicate my immune system (also don't have a spleen) with radiation. Wow, that was a turn around from the statistics the resident presented me with at the beginning of the appointment. Not sure how I feel about all of this, of course it was my dream not to have to have any treatment, but this doesn't set well with my internal logic.

Thanks for asking, it was a long answer, but I am a complicated patient, so nothing is ever simple. I also have MCS (Multiple Chemical Sensitivity Syndrome), which is why I initially took Tamoxifen off the table for myself and thought I could at least rely on radiation to reduce my chances of recurrence. Anyone have any thoughts?

Managed to get a second opinion at both University of Michigan, Radiology, and at Mayo. Both doctors agreed that for my case, I would be better off with "careful observation" regarding the chance of getting the BOOP active again. The same dilemma presented itself with my MCS (Multiple Chemical Sensitivity) and Tamoxifen. I decided for forgo that treatment as well. I am highly allergic to petroleum-based products, products filtered with petroleum distillates. I also have a Primary Immune Disorder and should be getting immunoglobulin on a weekly basis, but can't tolerate that either. It's a difficult decision to make, but I am at peace with it. Thanks for responding, sorry the late response, this has been a crazy year. I was in the hospital for upper respiratory infection for 17 days, then had a bad fall and broke my nose, my hand, and the orbital socket of my right eye. Seriously, I can't make this stuff up.

Kate