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Radiation therapy & pneumonia - just me? Second opinion warranted?
I was a healthy athletic 60-something woman until, as part of my treatment for a surprise right-sided IDC in 2025, I underwent lumpectomy and a standard 15-round course of radiation, which I came through (I thought) without ill effects. Bit of a sunburn, had to do some PT work to fix some lymphedema, but nothing I couldn't handle. I breathed a sigh of relief when it all started to normalize toward Xmas.
In February I found myself in the emergency room, then admitted to the hospital, with an advanced case of what turned out to be organizing pneumonia. I'd never been told there might be effects on the (radiation-side) lung, and in fact the radiation folks still deny "their therapy" couldn't have anything to do with it. The pulmonology people had been telling me all along that radiation CAN be a trigger. Regardless, it's been a long and difficult spring/summer fighting this.
I've been on a high dose of prednisone for several weeks, and am now starting to taper off very, very, very slowly. But this past week the pulmonologist mentioned for the first time that the tapering off might fail, and my symptoms might keep coming back, because he's concerned it might now be an autoimmune condition I've had all along.
What?
Suddenly it has nothing to do with radiation and I just grew an autoimmune disease, magically, when the only variable was radiating that lung side last year? Both doctors (pulmonologist and radiation oncology head) work in the same organization that has a questionable reputation.
Do you think getting a second opinion from a reputable source might be in my best interests right now? I'm doing great at the moment, but everybody does great when hopped up on prednisone 🙂
Tired of this and wanting my life back.....
Love to all who are fighting.
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Hi diamond, yes pneumonia can be a side effect of breast radiation depending on the type of radiation you receive. I had 15 sessions with heart sparring breathing but was warned that the upper curved area of my L lung could develop scar tissue and pneumonia could be a side effect. It is not bacterial pneumonia that develops but a different type. Coughing is a symptom but not just the type of cough that comes from a dry throat. Contact your radiologist about your symptoms and or get a second opinion, my kind psychologist told me at the outset of all this always get a second opinion no matter what the issue is if you have concerns. Best to you.
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6 ReactionsYes, I suggest that you get a second opinion from the most well qualified doctor available, even if you have to travel. With any serious illness it's necessary to have full confidence in your medical/surgical team.
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2 ReactionsDiamond, not psychologist, my gynecologist told me…
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1 Reaction@diamonddog:
I am so sorry for what you've been through for such a long time fighting these difficult challenges! Please seek out a second opinion from a reliable cancer center with the best reputation, for autoimmune conditions are a serious health issue and you are still so young with a long journey of life ahead of you. Perhaps check with your PCP for her/his recommendation, please?
Wishing you all a better journey ahead with hope, peace, and love!
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1 ReactionHey! I think you could always get a second opinion. There’s no harm in that and it’ll give you peace of mind at the least. I’m sorry you’re having to go through this! Best of luck as you go through this and praying for you!!
I had 20 sessions, 15 regular and 5 boost, left side idc almost to the chest wall. I was told it could affect lungs and heart but pneumonia was not specifically mentioned though cough was. Cardiologist was not concerned - said he rarely sees it but it would take at least 5 years to know if there was any problem. I did have 2 lesions on lung that showed up on CT done 2 months later - they feel from position in the lung that it was from the boost treatments. Luckily haven’t had any problems from it and last pet scan actually indicted they appeared to be clearing (almost 3 years). Still have skin issues but surgeons office indicated this could be lifetime - as they put it, “radiation, the gift that keeps on giving”. I did have chemo and my blood counts have never fully recovered so I am also considered immunocompromised but no one has ever suggested doing anything different with my life. I had some skin issues (not breast related) while on the ai and oncologist sent me to dermatologist to make sure it wasn’t auto-immune before he would continue ai therapy. I would recommend second opinion, check bloodwork to see if any evidence of immune problems and see if they have any other recommendations other than long term steroids (which are immune suppressing).
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1 ReactionI had radiation therapy in November 2024. My lymphocytes crashed and the exhaustion was terrible. After the second month I thought this must be my new normal. I've always been high energy.
I retired. I am past retirement age, but enjoyed my work and only retired because of fatigue. I truly regret that now. A month after retirement my energy returned. This is good, but boy, did this turn out to be a terrible time to retire.
Then the pulmonitis set in. They said it was mild but put me on pulmicort inhaler for 3 months. For reference, it's inhaled but it gets into the blood stream.
That's when I started getting belly fat like I've never seen before and muscle wasting, even with ongoing exercise.
I was told my lymphocytes would return, but almost 2 years later, my absolute lymphocytes are at 0.5. Not getting any better and I know that's a risk for cancer returning and infection.
Ask the oncologist and I get, at least you're still here
Yes. I'm still here and grateful for that, but the radiation has definitely left permanent problems.
Oh, and the CHIP mutations. They increase risk of blood cancers. I asked if this was due to radiation (because they can be) but they insisted many people my age have these mutations.
OK. So, no problem...