Anyone who had " radiations pneumonitis" after radiations ?

Options
Hope14
Hope14 Member Posts: 40
edited June 2014 in Radiation Therapy - Before, During, and After

I finished a course of 5 weeks of radiations after lumpectomy. I was done my rads on dec 2013 ,I should mention that Right after I was done I experienced the most horrible local pain/ burn that you can imagine then recovered slowly but left me in pain and tendreness to the day. Now the thing is I've be been developing since 10 days severe cough sometimes dry sometimes with phlegm...I was so concerned that I went to see my dr and he said its a radiations pneumonitis. However he didn't prescribe any medications!!! Dr.google says radiations pneumonitis can get really serious. Please I appreciate any helpful feedback from ladies who've been there before...I've been going thru lots lately and I want to clear my mind about at least something on my ongoing list of complications....thank you...

· Share on FacebookShare on Twitter

Comments

  • AmyQ
    AmyQ Member Posts: 2,182
    edited May 2014

    My very good friend is on a course of steroids for radiation pneumonitis after lumpectomy and felt almost immediate relief. I'm not a doctor so can't give advice except to suggest you get a second opinion.  And you're right, the lasting effects can be serious and permanent so I would not hesitate to get in as soon as possible. Good luck.

    PS Want to add that my friend is an RN and her husband an MD.  They're both angry with her RO because this SE was NEVER mentioned before she began her course of treatment.  They're now on a crusade to get RO's to be forthcoming about radiation pneumonitis. 

    · Share on FacebookShare on Twitter
  • Hope14
    Hope14 Member Posts: 40
    edited May 2014

    Amy-thank you so much for your helpful feedback. Just like your friend i feel so angry that this complication happened to me and was never mentionned when i discussed the radiotherapy with my RO. They bombarded me with 50 gy of rx !!! And they said my lungs wont be affected with radiations because they are very precise with the way they do radiations now. And it wont irradiate any part of my lungs. Only the breast. The oncology people are all liars and i allow myself to say it. I read yesterday that radiations to the breast ia very dangerous even more than chemo is. Sorry for being blunt. I just lost faith in the cancer medicine. I wish i never did my radiations bcos i didnt want to do it at first place but all the drs from my family dr to the surgeon to the oncologist all pushed me into it using the " scare tactics". Now im so worried this complication will leave me with sick lungs for life. And the dr who told me i have pneumonitis didnt even bother prescribing some steroids. Im going to the hospital now. 

    · Share on FacebookShare on Twitter
  • rettemich
    rettemich Member Posts: 369
    edited May 2014

    Hope14, I can't give advise on this but I am sure glad I read this. I went in last week to have my Rads setup done. Something just kept nagging at me. I am an asthmatic, and when I asked the Dr. about that he told me the same thing. It won't it the lung, it will be fine, blah,blah, blah. After rereading some of my paperwork I see that they are to do the chest wall. Ok, That is just too close to my lungs for my comfort. My sis is a nurse and even she is saying she isn't really comfortable with that. I have an appointment with my DO on Wednesday.  Same day I was to start. I am going to postpone until I can get some real answers. I completely agree that the scare tactics  are just crazy. I just feel they really don't take it as an individual and more as a blanket treatment.

     You have every right to be Pissed. Get in their face!!

    This nonsense has to stop.

    · Share on FacebookShare on Twitter
  • Hope14
    Hope14 Member Posts: 40
    edited May 2014

    rettemich-please dont listen to those liara. Listen to your sister and to your guts. They keep saying complications are " rare" obviously someone will get those complications and its a person who will live a poor quality of life for the sake of defeating cancer???!! Ridiculous. I can see you have dcis like me. I am not allowed to tell you what to do but i dont think with your history of asthma you want to be subjectes to this complication. And yes you are right they reach the chest wall and thats so close to your lungs!!!! The oncologist when he sat with me trying to convince me that mastectomy has complications too. He never mentiooned pneumonitis   In fact i was scared of a second cancer. And he kept saying" its rare" ha!!!! If i had to rewind the time i would never do radiations. Please think before making your decision. Radiations are irreversible.  I hate all thoae doctors. 

    · Share on FacebookShare on Twitter
  • Hope14
    Hope14 Member Posts: 40
    edited May 2014

    Sorry for the misspelling. Im not good at typing from an iphone with a mini keypad. 

    · Share on FacebookShare on Twitter
  • Hope14
    Hope14 Member Posts: 40
    edited May 2014

    Amy- i have a question please .you said your friend got immediate relief after steroids. But what did the dr said for the future? Is her pneumonitis cured? Or is going to get worse later on in life as i read it can lead to pulmonary fibrosis. And this is what scares me the most. Or simply he didnt have anawers for her just like in breast cancer. They never have answers for us. Eveything is based on false statistics and data. As the lady above said they dont treat us as individuals. I still cannot believe they bombarded my breast and chest with 50 gy of xr for a dcis!!!!!!! Im going to see the dr today but my mind cannot stop thinking and anger is just eating me up...,

    · Share on FacebookShare on Twitter
  • AmyQ
    AmyQ Member Posts: 2,182
    edited May 2014

    Hope, 

    My friend is still receiving steroids but the treatment will be ending June 1.  They are hopeful this will be the end of it as it was caught and treated early.  I am happy you are going to see the doctor but I would like you to try to let go of some of your anger.  First, we don't know that is what's happening to you and secondly, your anger is eating you up and I can't believe that's helpful either.  Radiation pneumonitis is a RARE side effect but as my friend knows, it happens.  I believe far more patients receive benefit from radiation than are harmed.  Radiation is still the gold standard of treatment for BC and if there were no benefit or more harm than benefit, it wouldn't be an option.  I am sorry you are dealing with this.  Let's keep our fingers and toes crossed that you don't have pneumonitis but if you do, it's still in the early stages and can be treated.  Keep us posted.

    · Share on FacebookShare on Twitter
  • Hope14
    Hope14 Member Posts: 40
    edited May 2014

    Amy your words are very wise and i have so much respect for what you just said. I am sorry if i sound very negative especially discouraging the new ladies here who have to do rads. Im not trying to influence anyone's decision whatsoever. However i felt that if i was to rewind the time i would probably refuse rads. Anyways i dis refuse but thw scare of not doing it pushed me into doing it. My dcis was almost 6 cm so its large unlike the lady above who said she has asthma i can see she has 1 cm dcis. Anyhow her dr decided she has to do rads. I just wish ahe can do enough research and get second opinion before doing rads. Concerning me. I spent 6 hours at the emergency yesterday with my young kids and husband trying to figure out whats going on with me. I have an anxiety disorder so it doesnt help in such situations. They did some blood work on me and AGAiN a chest xray( i did one already few daya ago and the dr phoned me and said i have " radiation pneumonitis" according to the radiologiat report as well. However in the emergency the dr said" he cannot confirm any diagnosis such as radiation pneumonitis" and he cannot see any symptoms of bad sever pneumonitis!!!! And my chest xray is clear just like the previous one!!!! So how did my family dr " assume" its pneumonitis???? My husband was so mad as we came back home @ 1am with 2 tired kids and yet we still dont understand what i have??????!!!!!' Amy please tell me what was your friends symptoms like?? Did her pneumonitis show on her chest xray??? I really need to  know and im getting back tomorrow to my family dr as today was a national holiday here in CAnada. I want to stay on top of them til i get answers!!! The emergency dr refused to give me any steroids as he doesnt think i need them beside he doesnt believe i have pneumonitis ans he said if my symptoms didnt go away( cough,chest congestion and pain) my family dr should probably order a ct scan for me!!!! That means more and more radiations :((((

    · Share on FacebookShare on Twitter
  • justachapter
    justachapter Member Posts: 158
    edited May 2014

    Hi,

    I'm so sorry you are sick.  My radiologist did go over all side effects and this was one of them.  I'm in the states, and it appears you are in Canada?  My radiologist did state that if I did end up with that, a rare side effect, but a possible side effect nonetheless as my side chest wall is being radiated that steroids was the course of treatment.  Good luck and I hope you feel better.

    · Share on FacebookShare on Twitter
  • Rosiesride
    Rosiesride Member Posts: 513
    edited May 2014

    so important to have doctors you trust...

    · Share on FacebookShare on Twitter
  • bevin
    bevin Member Posts: 1,902
    edited May 2014

    Hi there, I did have radiation pneumonitis. It was a 3x3 cm area I recall on the edge of the lung. It has turned in to fibrosis and that does not go away. I understand this complication is rare as well. I suspect since my tumor was at the 6pm area and closer to the chest wall the radiation can spray. The only complication I notice now from the fibrosis is that I get more frequent chest infections on that side . Good luck to you.I hop you're okay.

    · Share on FacebookShare on Twitter
  • AmyQ
    AmyQ Member Posts: 2,182
    edited May 2014

    Hope, 

    I don't know all the details of my friends troubles except to say almost immediately after radiation she felt extremely tired all the time and developed a cough which wouldn't go away.  Her RO denied it was radiation pneumonitis but when my friend and her husband pursued seeing a pulmonologist, the diagnosis was confirmed.  They then went back to the RO very angry that she would deny pneumonitis is a very real side-effect.  Finally her husband, the MD, had to be very firm with the RO and said to stop BS'ing around. Only then would the RO admit it's real but rare.  The pulmonologist prescribed steroids and hopefully because this was caught early, my friend will not have permanent problems.  I do hope that if you have this complication you can get treatment soon and perhaps a visit with a pulmonologist will confirm or refute your condition.  Good luck 

    Amy

    · Share on FacebookShare on Twitter
  • Infobabe
    Infobabe Member Posts: 1,083
    edited May 2014

    Yes, Hope, see if you can get to a lung specialist.  

    Rads to the lung was listed in my informed consent as a possible side effect.

    · Share on FacebookShare on Twitter
  • Alicethecat
    Alicethecat Member Posts: 535
    edited May 2014

    Hi Hope

    I am so sorry you are going through this. However....

    Put Cancer Research UK radiation pneumonitis into Google and you will see that it is reversible.

    My onc referred me to a respiratory consultant who is not sure whether I have sarcoidosis in the right lung or post-radiation fibrosis. 

    Either way, he is not worried as the sarcoidosis could burn itself out in two or three years he says and the prf is not likely to have an impact on my life apart from making me a little breathless after exercise. I take asthma meds as before but nothing else.

    I have a check-up in November but am breathing easy - and hopefully you will be soon too.

    By the way, prf is NOT idiopathic lung fibrosis he says. Two different presentations.

    Is a referral to a respiratory consultant possible? 

    Hope this helps.

    Alice

    · Share on FacebookShare on Twitter
  • Hope14
    Hope14 Member Posts: 40
    edited May 2014

    i am so thankful for all the feedbacks and positive words and support. Thank you from my heart. I phoned my family dr today but hes not at the clinic and the lady promised to let him phone me and he never did!!!! Now you know why i hate most doctors. Feels like everything going wrong lately. They found what they called a " fibroadenoma" in my left healthy breast last week thru a mamogramm and i have a biopsy next week and im worried. Same time dealing with the lungs issues and im lost and overwhelmed. I still have chest discomfort but the cough has gone less around 80% i say and the phlegm also. But i still want to know what i have. I have troubles swallowing since about a month now. Everything seems to get stuck down my throat at first thought related to stress and amxiety. Now i dont know what ia it from. Its just too much going on in a short period of time with 2 young kids :/ .....

    · Share on FacebookShare on Twitter
  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited June 2014

    Hello all. I'm joining late in the discussion, but currently I'm going through "radiation hell" also with doctors arguing back and forth as to if I have radiation pneumonitis or not. It is very frustrating. As mentioned, side effects of radiation are glossed over. You know you have to go through the treatment like chemo, and just pray that the side effects are minimal. 

    Unfortunately some of us have severe side effects. I'm frustrated because one doctor did a short course of steroids which immediately helped, but yet my oncologist says no steroids.  I developed pneumonia back in March and now also have pleuritis. 

    I am going on 18 months of non-stop bc nightmare. First he diagnosis, chemo, surgery, radiation, now this.  

    Wish there was more information about how to properly treat it. We have to trust our doctors, but sometimes that can be difficult.

    Hugs to all!

    · Share on FacebookShare on Twitter

Categories