Lung damage nearly 3 years after radiation finished?

Options
Lily55
Lily55 Member Posts: 3,534

For the last few weeks I have had a lot of problems with the lung on my radiated side. I was radiated after MX. I finished radiotherapy in September 2012 so nearly 3 years ago. I had huge pressure on that side and could not expand my chest or lung, felt awful for weeks, in the end went to the doctor, had CAT scan showed nothing, but listening to my chest meant I was diagnosed with a pneumonia type infection on that one side only! Have taken antibiotics and am now on my second type of steroid inhaler. Even the doctor comments that side is the most affected and hardly anything on the "good" side......

So I am wondering if this is down to radiotherapy, have never had anything like this before but I can feel the huge difference between one side and the other.........and symptoms show that too.........

Has anyone else had anything similar? It is taking a long time to feel better and even my voice is affected sometimes now........

«1

Comments

  • Lily55
    Lily55 Member Posts: 3,534
    edited June 2015

    no one else has had rhis?

  • doxie
    doxie Member Posts: 1,455
    edited June 2015

    Lily55,

    Have you considered going back to your RO for help? Mine is very generous in blaming anything odd on rads. I had a small amount of lung damage that showed up on a CT scan and a rumbling he noticed at my last check up, but I'm sure the latter was from a recent chest cold.

  • GraceB1
    GraceB1 Member Posts: 213
    edited June 2015

    I have some fibrosis from rads and as I understand it this will make me more suspectable to infections in that lung the rest of my life. The lung doesn't expand as freely as the other one which means mucus can accumulate easier. Just something for me to be aware of.

  • Lily55
    Lily55 Member Posts: 3,534
    edited June 2015

    Thank you for responding, I am still on weekly check ups for my lung so its ciearly something worrisome.......

    when i mentioned my lung problem, without even suggesting it could be a consequence of rads the HEAD RO launched into a speech about how no one had ever had lung problems from rads at that hospital wtc etc.....he did not even listen to my chest whereas primary care doc did and sent me straight for Xray and told me i have suspected pneumonia on that side.

    I think I have fibrosis at best and am aware of how that lung does not inflate or work as well as left one....i am on a combi steroid inhaler now via a contraption to help it reach my lung as that lung does not have sufficient inhaling power....no one has even mentioned what you have Grace but I think it sounds very similar......why are doctors so defensive ?

  • leggo
    leggo Member Posts: 3,293
    edited June 2015

    It was made pretty clear to me that I would have lung damage and heart damage from rads (and the collateral scatter). Can't figure out why your RO would deny it. It's kind of common sense, no? Makes him look a tad stupid, I think. Having said that, the damage to my lung was minimal, the heart, still under debate. I do find when I breathe that lung has always felt "raspy" and that was 20 years ago. I remember being really sick once and that lung actually hurt. I certainly notice that lung isn't up to par with the other, but then again, I'm a smoker too, but I think that kind of damage would be in both (or maybe that's just my way of rationalizing smoking).

  • Lily55
    Lily55 Member Posts: 3,534
    edited June 2015

    yes i agree, my physical therapist is clear its rad damage

  • leggo
    leggo Member Posts: 3,293
    edited June 2015

    If it weren't so serious, it'd be kinda funny. They all blame each other for all we endure and nobody takes any responsibility for the side effects. Must be exhausting having to bull-shit your way through everything. I always thank gawd that my family physician blames cancer treatment for EVERYTHING and picks up the slack (or the physical therapist in your case). Hope it gets figured out for you, Lily.

  • obsolete
    obsolete Member Posts: 466
    edited March 2017

    So sorry that you're having these problems, Lily. My mom had suffered with similar symptoms for years, and I remember how difficult it was for her.

    My 50 yr old cousin had both rads & chemo for BC. She had noticed only after rads that her one lung on her BC side never felt the same again. She began to struggle a little with breathing walking up stairs and especially when exercising and laying down at night. Her rad onc denied any contribution by the rads.

    A few months later during the following winter my cousin caught respiratory infections much more easily than before & then pneumonia quickly ensued. My cousin eventually ended up in ICU with ARDS (acute respiratory distress syndrome) but sadly never recovered. Their family doctor thought her last round of chemo might have possibly contributed to pneumonia to her already compromised lung but also felt that the rads could have "possibly" affected her heart & lung on her BC side, so it could have been a combination of things. Her family doctor believed my cousin began suffering from early stage ARDS during BC treatment, but it could have been genetically related because my cousin's mom had died from emphysema, although was never a smoker herslef. There always had been 2nd hand smoke in their household because my uncle had been a chain-smoker over many years.

  • Italychick
    Italychick Member Posts: 2,343
    edited June 2015

    I can't do rads because of prior radiation, but I consulted with an RO, and he said there would definitely be heart and lung damage because they can't avoid hitting those areas. There is I guess an acceptable percentage of damage that has been deemed okay by the medical community

  • leggo
    leggo Member Posts: 3,293
    edited June 2015

    Yup, like a certain amount of deaths related to a fault in a vehicle is acceptable before issuing a recall. If it costs more to fix or change....well you know the rest, blah, blah.

  • JustJean
    JustJean Member Posts: 327
    edited June 2015

    My RO NEVER wanted to blame anything on rads. Three months after finishing rads I end up in the hospital with Radiation Pneumonitis, Pneumonia, and a Pulmonary Embolism. I fired her... but quite honestly I despair of ever finding one that will tell me the TRUTH.


    Good luck to you!!!

  • AmyQ
    AmyQ Member Posts: 2,182
    edited June 2015

    My good friend is suffering from radiation pneumonitis which her RO is viemently denying. She found an excellent pulmonologist who is treating w steroids but it's been a year-long battle so just got a referral to Mayo next month.

    Btw, the RO was a real jerk and wouldn't listen to my friend, an RN or her doctor husband. She kept saying "impossible" you've got other lung issues NOT related to radiation, you must be a smoker...which she is not nor ever has been.

    Amy

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited June 2015
    Both ROs I've spoken with have spelled out the possibility of both reduced lung function and radiation pneumonitis. I cannot imagine an RO denying the possibility of lung damage due to radiation. It is rally shameful that some do.
  • Lily55
    Lily55 Member Posts: 3,534
    edited June 2015

    thank you everyone, I feel reinforced now! I know it is from rads as that side of my body is tight and inflexible, and AIs affected breathing too, but this is different, I really need steroid inhalers which i never have before, dont smoke, dont hang out with smokers either, and do not have a history of lung problems. My RO told me they are so careful and precise theynever cause collateral damage! I have rapidly lost trust, feel really on my own with it so very grateful you all responded.........I am surprised it started so long after rads as all info seems to say itsreally rare but that does not seem to be true now either!

  • doxie
    doxie Member Posts: 1,455
    edited June 2015

    Actually, damage from rads can occur many years from treatment, in breast, lungs or heart. My RO was very clear on this. That's one of main reasons I return by-yearly to him. The other is that he gives the best breast exam of any doctor or nurse I've ever had. Another is that he is a character, like an older brother and grandfather rolled in one. We have long chatty appointments, if he can, and I run by all kinds of esoteric stuff by him. My other doctors now are in and out, bam!

  • tshire
    tshire Member Posts: 239
    edited June 2015

    I've had lifelong asthma. It mostly flares up whenever I have a cold or flu; I don't take the inhaler that often. I have a lumpectomy/SNB scheduled for July 13th. There are so many "what ifs" I just want to have all the information from final pathology to decide on treatment.

    I am reserving the possibility of mastectomy instead of radiation after I have all the facts- I just want to be sure my nodes are clear, because if they're not I'll need radiation anyway and I'd rather not irradiate my chest wall if avoidable.

    But I am open to conserving my breast with radiation too, my doctors all insist it's so very safe. No one mentioned my ticking the "asthma" box on the form with "other medical conditions." Reading this thread scares me, my lungs are already fragile.

  • TNCatMom
    TNCatMom Member Posts: 10
    edited August 2015

    I finished radiation on April 9, and about 5 weeks later started developing irritation, painful deep breathing and a dry cough. I was scheduled for a CT anyway, since I have some lung nodules they are keeping an eye on that are too small to biopsy. I was scheduled for a PET in August, but had it two weeks ago because my symptoms had gotten so much worse. I had reached the point where any exertion at all was causing really bad symptoms. Monday I saw a lung specialist, and Tuesday had a bronchoscopy under general anesthesia. I also have two swollen lymph nodes that showed quite a bit of uptake on the PET, so those were also biopsied on Tuesday. We do suspect lung mets, but the lung doctor said that I had a lot of lung damage and scarring from radiation. This is called radiation pneumonitis and is normally treated with prednisone. The lung doctor was going out of town next week which is why he did my procedure so quickly. He is sending a detailed report to the oncologist, and I will see the oncologist next week. I understand that this is common after radiation. It is when it goes untreated and worsens that it can turn into lung fibrosis. Also, I did throw a massive blood clot in my lung following surgery back in 2002, so I will need to find out what kind of risk factors I have there.

  • Lily55
    Lily55 Member Posts: 3,534
    edited August 2015

    i took prednisone but my heart was racing and racing, so I had to stop, lung was improved but feels like its getting worse again

    Any news on your lung? Hope its not mets


  • Pheasantduster
    Pheasantduster Member Posts: 2,905
    edited August 2015
    Lung infiltration, pneumonia, lung irritation - whatever - the diagnosis it is lung damage from radiation. I suffered pain with breathing 3 months after finishing radiation (7/2013) Last 3 doses were 'booster' treatments for area around nipple only. Position of my body was on my side with form for my body made to keep me in place. I was told there was a chance of pulmonary damage at my initial group visit with cancer team. (1-2013) In the scheme of things, radiation was necessary. In July my oncologist sent me to the ER for chest pains. Xray showed lung infiltration. A Pulmonary Dr saw me the next day at 6:30 a.m. and he had studied my records already. A series of treatments with Predisone - then back on predisone in September (right lung involved - no relation to radiation) and then again during 2014. Chest Xrays taken prior to each visit. Finally this past Feb he is satisfied with outcome. My radiologist was reluctant to admit what happened - but finally did in my visit of 2014. I am seeing her in again in 2015. I wonder why I am scheduled to see radiologist continuously. I see my oncologist every year which I understand as she prescribes the aramatase inhibitor drugs. I am trying my 3rd med (exemestane). Having terrible with muscle pain and bone ache. Fighting cancer is hard. One day at a time.
  • Shinny
    Shinny Member Posts: 6
    edited August 2015

    Lilly, I finished radiation April 1012 that summer my feet started collapsing can't even walk without really good shoes, never had any of these problems before radiation, have ringing in my ears, and sharp stabbing pain in my ribs under when I move certain ways feels like my ribs are collapsing! I am still really sensitive to the sun, and I have had a cough all winter. I feel it is all from radiation I wish I never had the Rad if I could do it over for dcis I would have just done the lumpectom

  • Leah_S
    Leah_S Member Posts: 8,458
    edited August 2015

    Every scan I've had since rads mentions "fibrotic changes consistent with radiation treatment".

    Leah

  • Lily55
    Lily55 Member Posts: 3,534
    edited August 2015

    THank you everyone - my follow ups are only with the Rads Onc and he is very defensive........I have had loads of treatment on that lung andn jsut two weeks after stopping steroids its all coming back.............I cannot tolerate steroids as they make my heart beat very erratic adn i feel totally on edge......and that side of my chest feels totally different, I KNOW its a rads side effect but getting official recognition is a huge battle it seems

  • april485
    april485 Member Posts: 3,257
    edited August 2015

    ((((Lily55)))) Hugs and hope that it self-corrects somewhat. The reason I say this is because I was diagnosed with something called "situational asthma" right after starting exemestane which I thought was the culprit. But, I had finished rads just two months prior and it was my left lung that was acting up and I had rads on my left side. I was given an inhaler for difficult breathing days which I am thankful were few and far between!

    I was in a clinical trial and had 10 treatments of radiation in 5 days (2 x a day 6 hours apart) and it was at very high "gays" which is how they measure rads. I still cannot fully inflate when I am deep breathing but it has gotten somewhat better with time. RO does not think it is from rads although she did show me dosimetry report which clearly shows that a corner of my left lung would be in the field and could not be helped. I think she would like to not think it is from rads but I know it likely is. Am also having a bit of difficulty swallowing these days and think that too is from my rads. Sigh...

  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited August 2015

    Thankfully, the only side effect that I have had (besides the skin issues during radiation) have been some scar tissue/truncal lymphedema in my intercostal muscles on the radiated side. It made it difficult to take a deep breath. I went to a massage therapist who broke up the scar tissue (it hurt like heck, really) -- worked like a charm. There are massage specialists that deal with issues from breast cancer, if your doctors/nurses don't know of any, you can try your local cancer society?

    I am a runner, and ran a marathon ~ 6 months post radiation (my personal best).

    Best wishes ladies.

  • Morwenna
    Morwenna Member Posts: 1,063
    edited August 2015

    I had radiation in 2013, following a left mastectomy and chemo. They had gone slightly into the chest wall musculature to ensure clear margins, so it was going to difficult to irradiate the chest wall and not the underlying organs.

    I had a bolus, an artificial tissue layer, placed on my chest to help focus the beams superficially, and also had to hold a deep breath in during treatment bursts, to lift the chest wall away from the heart.

    I have little doubt that my lungs took some radiation, and a recent chest CT (lung clots) described some scarring in the lingula, the middle portion of the left lung, which might have been caused by radiation, although I have noticed chesty colds since adulthood, seem to feel like they mostly affect that area, so maybe I had scarring there before?

    I'm doing pretty well now, and can climb several flights of stairs, although I do feel I get more breathless than I should if I try to run, or cycle uphill etc, and slightly wheezy.

    My Rad Onc has claimed responsibility for "50%" of my lymphedema, the other 50% being from my lymph node clearance!, but nobody has flat out informed me I have radiation pneumonitis.

  • Astarte
    Astarte Member Posts: 45
    edited August 2015

    I just finished my radiation treatment Monday (yay!!). It all went smoothly and without issue, was definitely the easiest part of my treatment (hardest was AC if you're wondering). in the last two weeks of radiation, I started developing a cough and a feeling like there was mucous at the bottom of my lungs that I couldn't get out. Nothing comes up usually when I cough. My voice also tends to give out, the techs said it's definitely the rads doing it. I also started to feel more winded starting then too, like I can't get a good, deep breath. I'm very active and noticed it right away. I don't know if that helps you out any, but radiation does definitely cause some of these things.

  • 614
    614 Member Posts: 851
    edited September 2015


    I was born premature and I have had lung issues my entire life as a result. (pneumonia and bronchitis and chronic coughing.)  However, moving from NY to FL 13 and 1/2 years ago was the best thing that I ever did because the warm tropical weather stopped my twice a year bouts of bronchitis and months long chronic coughing cycle.   I have only had bronchitis a few times since moving to FL.  I have never had asthma and inhalers have never worked for me.

    That being said, I finished radiation to my left side in October 2014.  I held my breath during the radiation tx.  My RO used the Canadian study approach where I was given the same amount of radiation for less weeks with a higher dose each day. 

    I felt fine until now.  I have been sick for 4 weeks.  Granted, I just went back to work and I work in a high school so I am exposed to many germs.  I also work in a very poor, rural area, where they burn sugar cane.  I am sure that there is also pesticide exposure.  I live very far away from where I work so I am not exposed the air pollution all of the time.

    I have been working extremely long days and I have been sick.  I waited to go to my PCP because I felt that I had the flu or a bad cold.  I went to the doctor 1 week ago and he said that I had a sinus infection.  He gave me a Z-pack and a Dex-Pack (the same thing as Prednisone but a different brand).  I was still sick so I went back to my PCP 2 days ago.  The doctor told me that I now have bronchitis.  My left side is far worse then my right side and my doctor attributed that to my radiation tx.  I feel awful, I am totally exhausted, and my lungs hurt.  These are not my usual symptoms of the chronic bronchitis that I have had my whole life.  Usually, I cough continuously.  I am coughing but not that much. 

    I think that I will have to go back to my PCP again next week to see about having a lung X-ray.  My lungs are painful and I feel so "out of it".  I continue to go to work because I have to, but I feel like I can barely function.  I have always coughed but I have never been so sick and felt this bad for this long.

    After reading this thread, I am wondering if this is due to side effects from my radiation tx.  It does make sense.

    Luckily, my RO is wonderful.

    Good luck to everyone.

  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2015

    So I am not alone then, thank you for all your comments

  • AKJ
    AKJ Member Posts: 190
    edited September 2015

    I can't believe an RO would deny lung or heart damage from rads. My RO was also very clear about both possibilities as well as lymphedema risk. Luckily my lungs seem to be ok so far

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2015

    Do you think the Ro is worried about a lawsuit?

Categories