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Pulmonary Fibrosis / lung scarring after Rads???

Question:  I am curious about women who had pulmonary fibrosis (scarring of the lungs) as a result of receiving radiation treatments...Did you also have a lot of the blistering and break down of your skin surface from the treatments?

I'm just thinking there could be some kind of connection to the two things, so if you know you have fibrosis in the lungs, please comment on how your skin did during rads.  Thanks!

p.s. Also wondering if chemo is a factor to the lung problems?  Women with lung issues after rads, did you have chemo beforehand?

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Comments

  • squidwitch42
    squidwitch42 Member Posts: 1,467
    edited September 2010

    Hi!

    My skin did VERY well...shocked us all.  I am fair skinned/freckles and was diligent with my skin care.  I had redness and some localized pain, but did not blister.  It was not a walk in the park, but my PS had mentioned the words skin graft, so I was bracing for the worst.

    Now the lungs....,my PET/CT showed pleural thickening of my lung front and back, which my Onc felt was related to the radiation.  My Radiation Onc did not agree with him. I am in the middle of this...have had some shortness of breath, chest/lung pain and have noticed an increasing issue with exercise. So I have been using a steroid inhaler which has helped some.  I don't know what's going to happen.  But that's my story, and I will update you with any changes.  Let us know how your research goes!

    Traci

  • squidwitch42
    squidwitch42 Member Posts: 1,467
    edited September 2010

    Hi!

    My skin did VERY well...shocked us all.  I am fair skinned/freckles and was diligent with my skin care.  I had redness and some localized pain, but did not blister.  It was not a walk in the park, but my PS had mentioned the words skin graft, so I was bracing for the worst.

    Now the lungs....,my PET/CT showed pleural thickening of my lung front and back, which my Onc felt was related to the radiation.  My Radiation Onc did not agree with him. I am in the middle of this...have had some shortness of breath, chest/lung pain and have noticed an increasing issue with exercise. So I have been using a steroid inhaler which has helped some.  I don't know what's going to happen.  But that's my story, and I will update you with any changes.  Let us know how your research goes!

    Traci

  • elimar
    elimar Member Posts: 5,882
    edited September 2010

    That goes counter to the idea I had already. 

    I was also prepared to have the weeping blisters that a friend of mine told me she had during her rads, but I didn't.  My skin issue were very minimal.  I know for a fact that 13% of my right lung was in the radiation field and I was very concerned about it last year when I had treatment.  Just today, about 11 mos. later., I saw my Rad Onc and we looked at a chest x-ray that I had taken for a back problem six weeks ago.  Well, my radiated lung looked exactly the same as the untreated side.  I guess maybe I just got luck on both counts, the skin and the lung.

    Maybe if more people comment, we can see if there is any correlation all.  Or there just may be no rhyme orr reason to who gets which side-effects.  Thanks for your info.  Sorry you are having the lung issues.  I know why we get the rads, but the whole process is pretty barbaric.  It's so damaging for so many!

  • squidwitch42
    squidwitch42 Member Posts: 1,467
    edited September 2010

    elimar,

    I'm glad you were aware of everything....I got some info, and should have asked more.  It was such a struggle to get to the place where I agreed to do it that I put my head down and pushed through it.  I had a mastectomy, so I had tissue expanders in...I was told rads were important because they only got a 1 mm margin on the chest wall.  The stats were important to me to try and prevent mets...but I am struggling a bit. We do the best you can with making decisions in all of this BC, don't we :)  Glad your lungs looked the same as baseline!

  • blackjack
    blackjack Member Posts: 771
    edited September 2010

    Morning girls, I just wanted to comment on the radation to your lungs. I had rads over 3 yrs ago to my left breast. I had a very difficult time as I did the Canadian protocol of 21 tx and 4 boost. I developed SOB after the 3 tx, which increased my asthma problem. I sought out a pulmonologist and had pulmonary function tests done.  The results were that I had scarring of my left upper lung which was in the field of the rad beam. I had pneumonia 2 months after my initial treatment which landed me in the hospital. Today I still have asthma issues and I am prone to resp problems.

    I guess we are all different in how our bodies handles these txs we are given. I hope you both sail through txs and heal away. 

    Hugs,

    Blackjack

  • elimar
    elimar Member Posts: 5,882
    edited September 2010

    Sorry to hear of continuing respiratory problems.  Actually, I was trying to find out if those who had the eventual scarring in the lungs were the ones who also had the bad skin reaction during treatment during treatment or not?  Can women reading this please leave a comment not only about their lungs, but whether or not they had skin issues as well because of rads.  Thanks.

  • Julie50
    Julie50 Member Posts: 7
    edited September 2010

    I just went for a chest x-ray due to a cough I started to get 3 weeks into radiation.  I have two treatments left.  The Rad Onco said "IT WAS NOT FROM RAD" but my Medical Onco disgreed with him.  So we will see what the x-ray shows.

    My nipple is very dry and hurts like made, I itch all over the area that is being rad.  

    Julie

  • blackjack
    blackjack Member Posts: 771
    edited September 2010

    Elimar, I did develop an upper chest rash during tx. The rad md told me it was not from rads but from sun exposure. I had my rads done in June. We had a big disagreement over this issue. I missed 4 txs due to my asthma. I wound up on steroids for part of my tx and went to my dermatologist for my skin issues. I think I was over exposed to rads but nobody will admit to it. Today post 3 yrs out I am still dealing with my lung issues.

    Blackjack

  • Leah_S
    Leah_S Member Posts: 1,929
    edited September 2010

    The only skin issue I had with rads was some pinkness and radiation dermatitis (think itchitchitchitch). When I had a CT-PET in May (9 months after rads finished) the report said  my lungs had "post-radiation changes" - not sure what it would be called in a radiologist's report in the U.S. since I'm translating from the Hebrew. However, with that type of wording my guess is that it's not uncommon. The question is if it is symptomatic. For me, I've had mild asthma for years which is more frequent than it was before rads though the severity of the symptoms is the same.

    Leah

  • hope10
    hope10 Member Posts: 2
    edited September 2010

    My skin changes were not too bad during radation, a little red and a little tender.

    My big problem  was that 2 months post rad. that i developed shortness of breath esp after exercise and a dry cough. I was diag. with radiation pnemonitis and put a a high dose of predisone for a 9 week course. Unfortunely, my symptoms have returned since stopping predisone.  my rad. oc. does not how to treat me and i have to go see a pulmonagist. I am really frustrated.

  • elimar
    elimar Member Posts: 5,882
    edited September 2010

    Well, so far the responses are leaning toward the skin not being an indicator of what is happening to the lungs inside.  It isn't until some months afterward that the lung damage makes itself known (by shortness of breath and/or dry cough, just like you are saying.)  but it is definitely damage done by the rads.

    I just put a "p.s." at the top, because I am also wondering if the lungs are more likely to get fibrosis if a woman goes through chemo beforehand.  I did not have chemo myself, so maybe some of you who are having lung issues can also comment if you did have chemo first.

  • susan1964
    susan1964 Member Posts: 4
    edited August 2013

    I finished my rads in April of 2012...I've been wondering about lung scarring because I constantly feel like I can't take a deep breath....my appetite hasn't been great since starting on the Tamoxifen...my primary care dr. says its anxiety and I've been taking Xanex since my dx in December of 2011, but it doesn't alleviate it at all, so Ive thought it might be someone else....its like a nervous, nauseous feeling, but no vomiting....if it is lung scarring, can it improve with time without medication? I'm going to bring this up to my oncologist the next time I go...

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited August 2013

    Not sure, but I would think the scar tissue would become more flexible with time; just like scar tissue on other parts of your body.  I'd be interest to hear what your doctor thinks though. I have some lung scarring from bronchitis when I was young. But my breathing has never been a concern.

  • Jil204
    Jil204 Member Posts: 1
    edited July 2018

    I am 3 years post radiation to left breast for breast cancer . I have been extremely out of breath, I use to have just episodes but now it seems like all the time I’m having SOB goin upstairs or soMetimes just walking around. I’m having a CAT scan with high resolution on Thursday to see if there’s any scarring. I’ll let you kno

  • GG2
    GG2 Member Posts: 14
    edited September 2018

    Yes I have interstitial lung disease which I believe is a result of radiation. I was first diagnosed with bronchiectasis 2 months after ending radiation. I felt no symptoms at all. Now 4 years later, CAT scan shows pulmonary fibrosis, and symptoms include weakness, out of breath almost all the time, morning clearing cough and weight loss. I lost about 30 lbs during chemo, but now, another 20 has folks telling me I look "frail." (Being urged to eat more and gain weight was always a secret aspiration of mineLoopyso be careful what you wish for!Happy) I have another lung test schedule and then see the lung doctor again week after next. I am more curious than anything else.

  • celand
    celand Member Posts: 223
    edited July 2019

    I am 3 yrs out from left breast radiation and am seeing a cardiologist for a battery of tests because of abnormal ekg (bundle branch block right) which I have read can be caused by pulmonary issues. My radiation oncologist did tell me that a part of my lung was in radiation field so if I had a chest xray to let dr know that I had radiation. I do notice that I am now extremely sensitive to strong smells and exercise has been an issue, as I am very sensitive to heat but no major shortness of breath, but I can still do gentle yoga and swimming exercises. I do have nights sweats, racing heart, some mild chest pain when I am anxious.

  • edwards750
    edwards750 Member Posts: 1,568
    edited July 2019

    I had 33 radiation treatments almost 8 years ago. My RO didn’t fill me in on the possible short and long term side effects but to be fair I didn’t do as much homework as I should have either. I do remember lung scarring as a side effect.

    Several years ago I went to a minor medical facility because I had shoulder and back pain. I had been lifting my 2 year old twin grandsons so I thought lifting them was the cause. The PA tested me for pneumonia which was negative. Then she ordered a chest X-ray because one of my lungs wasn’t clear. I have constant allergies. The X-ray showed a lotof lung nodules and the PA freaked out and said I needed to go back to the cancer clinic where I had my treatments like ASAP. I said I would wait for the radiologist’s report. She said he would agree with her. He didn’t. X-ray was normal with no evidence of any lung disease. The PA did say it could be scar tissue which I suspect it was.

    I learned from being DX with BC that side effects can be instantaneous or take years to develop.

    The gift that keeps on giving. Ugh.

    Diane

  • celand
    celand Member Posts: 223
    edited July 2019

    I also have hyperthyroidism so that plays into all of this for me as well. Hopefully, I will get some answers between my cardio tests and others that Endocrinologist will order. Will keep posted.

  • jessie123
    jessie123 Member Posts: 134
    edited July 2019

    Celand - bundle branch block is very common - I've had it for years. No one is ever worried about it . It's scary to get that report on an EKG.

  • celand
    celand Member Posts: 223
    edited July 2019

    Jessie123,

    Thank you for this information, although the doctor said that it could be nothing or it could be something but we won't know until I do the cardio exercise stress test and ultrasound of my heart, so I am trying to put this out of my mind until I do these tests and find out the results. I do get anxiety when I think about it though. You are right that it is scary to hear this about an ekg.

    The main worry that I have is that I read that this could be something pulmonary causing this such as a pulmonary embolism and being that I am taking Tamoxifen, well, this comes to mind.

    Celand

  • celand
    celand Member Posts: 223
    edited August 2019

    Well, after going thru the cardio nuclear stress test yesterday, the doctor's nurse called me to let me know that I had no ischemia and no blockages, so I will go for my heart ultrasound today and see what that report tells me. I do wonder if some of my cardiac symptoms (high BP, mild chest pain, sensitivity to smells (feels like I am suffocating when I am near certain smells) racing heart /palpitations) has any relation to my lung being scarred following radiation. The radiation oncologist told me that a part of my lung would be scarred but didn't really tell me more other than I would need to mention that if I was to get a chest xray. Also, the cardiac nurse told me that I should not have blood drawn or BP taken from my left side because of the lumpectomy and removal of 5 lymph nodes. Well, will update my post once I receive my ultrasound results.

  • macb04
    macb04 Member Posts: 756
    edited August 2019

    I have rads damage to my left lung. When I had a cold, only my left lung would gurgle when I had been sleeping for a while. Woke me up almost every night to cough all the crap out of only the left lung, for almost a month. Hated it.

    Big regret letting them fry the ever loving crap out of me.

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited August 2019

    For those of you with pulmonary fibrosis, what treatment did you have early on for pneumonitis? My MO only put me on a week's worth of steroids after seeing some infiltrate in my lung on x-ray. It's been a week since I finished the steroids and I'm still coughing up a storm and short of breath upon exertion. I also have the racing heart rate and chest pain at times. I'm not sure if it's supposed to get better after time or if I need more treatment. I'm a bit frustrated with the cavalier attitude from some of my medical team.


  • macb04
    macb04 Member Posts: 756
    edited August 2019

    Whatjusthappened. Go see a Pulmonologist if you haven't already. Did they at least TAPER down the steroids.???

    Your MO sounds a bit dim. My regular MD put my friend on a weeks worth of Steroids for just Bronchitis.

    Surely a severe, life altering side effect such a Pulmonary Radiation Fibrosis, needs more than a piddly little week of oral steroids.

    Like I said, self refer, or KICK UP A SH*T Storm of complaint if your MO or other doctors won't help you get to a Pulmonologist ASAP. The fibrotic changes are PERMANENT. No time to waste.

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited August 2019

    Thanks macb04 for the advice. I was on Prednisone 4x a day for 3 days followed by 2x a day for 4 days. No follow up whatsoever, so I'm planning on calling today to let them know it didn't work. I've been feeling like crap all weekend. Never even thought about seeing a pulmonologist, though I've thought about calling my RO to see what he would do.

    Just to clarify, I don't have fibrosis yet, just pneumonitis, but I do know that it can progress to fibrosis if left untreated. What kind of treatment (if any) did you get for your lungs early on? Obviously it didn't work for you if you ended up with permanent damage anyway. I've read that treatment is usually a long course of steroids, but I don't know what constitutes "long". I agree with you that a week seems insufficient.

  • sildann
    sildann Member Posts: 1
    edited August 2019

    I had severe sunburn and a little bit of blistering toward the end of radiation in December. It lasted a few weeks after radiation. I found out my cough since this spring was due to radiation affecting the lung and not allergies as I had thought. I am seeing a pulmonologist Tuesday. I believe it to be pneumonitis but I'll find out more next week.

  • Sara536
    Sara536 Member Posts: 5,937
    edited August 2019

    Whatjusthappened - I have very similar symptoms including a cough. My radiation was four years ago so is not an immediate suspect. I had some foot and ankle swelling after a flight which is why I went to an ER where I was told to get an echo when I got back home. All those other symptoms could be heart failure too. My pcp is trying to rule out mild heart failure and has referred me to a cardiologist. Are you still taking Arimidex? It has been associated with heart problems. There’s no harm in checking it out. I hope we both find out what is going on. I am so tired of one thing after another. :)

  • moderators
    moderators Posts: 7,684
    edited August 2019

    sildann, welcome to Breastcancer.org, and thank you for sharing your experiences with radiation and lungs. Please, let us know what you learn next week at your appointment! And if you have questions in the mean time, feel free to get in contact with us, we're always here!

    The Mods


  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited August 2019

    Sara536, I am still taking Arimidex. I've only been on it about six weeks. I had high blood pressure before BC, and it has gotten worse with the Arimidex. There is a strong family history of heart problems in my family, so it certainly worth considering that it may be at least partially heart related. I called and left a message with my MO this week and nobody ever called me back. It's very frustrating! I'm a teacher, and I barely have time to sit down during the day let alone play phone tag and chase down my doctor.

    Like you, I am so tired of one thing after another. I'm also tired of smiling and saying I'm fine when people ask how I'm doing (I've noticed that not many people are interested in the honest answer to that question). I think everyone assumes that after surgery I should be back to normal. I'm starting to wonder if I'll ever feel "normal" again.

    I hope the cardiologist appointment provides you with good news, or at least some answers. Sorry for my mini-rant. I've had a hard week, and I'm exhausted and depressed. Just needed to get that out to someone who actually understands.

  • macb04
    macb04 Member Posts: 756
    edited August 2019

    Whatjusthappened, I put myself on Hawthorne Extract daily and it helped my decreased exercise tolerance a good bit. It is very safe, and will help with the strength of contraction of the heart muscle, increases efficiency of the pumping action of the heart.

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    Hawthorn berry may be difficult to find at your local grocery store. However, you should be able to find it at farmers' markets, specialty health food stores, and online.

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    SUMMARYHawthorn berry is safe with few side effects. Speak with your healthcare professional before starting this supplement if you're on any heart medications.

    The bottom line

    Primarily due to its antioxidant content, hawthorn berry has numerous health effects, especially for your heart.

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