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I thought I had escaped the worst side effects of radiation therapy, but this year, four months after the end of treatment, I developed something they're calling "organizing pneumonia" in the lung on the treatment side. I'd never had issues with my lungs in my life, yet the radiation oncologist swears that "her" treatments had nothing to do with it -- while the pulmonologist assures me that they caused it. It got so bad I collapsed eventually, was hospitalized, many weeks of antibiotics and… read more
@A MyBCTeam Member ...thanks for the above info. My main oncologist and primary care doctors monitor my breathing closely since my CDK inhibitor can cause breathing issues and since I've been complaining about shortness of breath since my first course of chemo in 2022. After reading the info on both sites I know I don't have COP. I was diagnosed with the emphysema when I had my 1st post chemo PET scan and the post radiation PET scan from late last year shows it being worse. I've been on steroids 3 times in the past few years and they never did anything to help with the shortness of breath. I hope to never take steroids again due to the side effects. Last time I was on them they gave me edema, moon face, and reallocated fat from I don't know where to my upper arms. I learned that's a strange side effect from steroids. I had to buy new clothes cause most of my non stretch cotton blouses and dresses wouldn't fit over my arms any more. But I digress, thanks again for the info. Maybe someone else with similar issues will run across this and be helped out ❤️
If you have any newly developed issues with your lungs or heart after radiation, it is important to discuss it with your doctors as soon as possible. I didn't have radiation but I had read numerous posts on different breast cancer sites about the side effects before I made the decision not to do it. I hope this information helps.
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Secondary Organizing Pneumonia (SOP): Cases where the underlying trigger is identified. Common triggers include autoimmune diseases (e.g., lupus, rheumatoid arthritis), certain medications, radiation therapy, and prior viral infections (including COVID-19).
Organising pneumonia (OP) is a serious but generally treatable lung disease. While it has "pneumonia" in its name, it is not an infection. It occurs when the small airways and air sacs become inflamed and scarred, making it harder for the lungs to transfer oxygen into the bloodstream.
The severity of the condition depends heavily on how early it is caught and how quickly it progresses. The outlook for the condition varies based on the presentation:
Highly Treatable in Most Cases: Up to 80% of patients recover completely, often rapidly responding to prescription corticosteroid therapy (such as prednisone). About 50% of mild cases can even resolve without any medication.
Risk of Relapse: Symptoms can return when corticosteroid doses are lowered, requiring the treatment cycle to be restarted or escalated.
Potential for Lung Damage: If left untreated, OP can lead to serious, persistent scarring (fibrosis) in the lungs and may require hospitalization.
Rare Fulminant Cases: In a small percentage of patients, the disease can rapidly progress over days into acute respiratory failure. This severe, aggressive variant resembles acute respiratory distress syndrome (ARDS) and carries a high mortality r
For more specific information on symptoms, causes, and treatment protocols, you can read the Cleveland Clinic Cryptogenic Organizing Pneumonia Guide or the American Lung Association COP Page.
Because the disease presentation varies widely, you should consult a pulmonologist or healthcare provider for an evaluation tailored to your specific symptoms and medical history.
https://my.clevelandclinic.org/health/diseases/...
https://www.lung.org/lung-health-diseases/lung-...
Yes, these issues can even show up years after radiation. I'm sorry the radiologist is not willing to acknowledge that radiation was a possible/probable cause. Perhaps your pulmonologist can share peer reviewed articles etc. so that she either educates herself, or understands that being less than honest about side effects of radiation only reflects poorly on her.
In the meantime, I hope the pulmonologist has some ideas as to how to make you more comfortable, and for monitoring protocols. Gentle hugs!
First, what you're going through sounds absolutely exhausting — physically and emotionally. Feeling caught between two doctors who can't agree while you're the one actually suffering? That's a special kind of frustrating, and your feelings of defeat are completely valid.
You are definitely not alone in this. Lung Show Full Answer
Yes, I was referred to a pulmonary doctor a couple of months ago, but I haven't made an appointment yet. I'm just relieved to finally know what's causing my shortness of breath. I probably won't make the pumonary appointment unless things get worse. I'm just so worn out from over a year of cancer treatment and recovery along with all the doctor appointments. The past couple months I'm starting to feel almost normal again, or I should say I'm getting to where my new normal is going to be since after every battle I don't quite make it back to where I was before hand phyically.
That's great that your anemia has gone away. It must be a relief to have a solution for the restless legs. My ex had that problem and it was irritating for both of us. Hopefully they can figure out what's causing your shortness of breath soon and there's something that they can prescribe to help with it ❤️
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