Lung damage nearly 3 years after radiation finished?

Lily55

Its public health system so no concerns re lawsuits........I am now using an inhaler that relaxes muscles around lungs and it is the most effective, some days I don´t ned to use it as am having physical therapy to break up tightness on my chest, so I KNOW for sure it is radiotherapy related.......especially as it is only on that side!!!

THanks for all your replies

AlaskaGal

Thanks for posting your complication, it's important that women speak out about side effects because the doctors tend to minimize them. I have felt deeply skeptical of radiation but it is highly recommended for me since I am just 37, though my oncotype recurrence score is low (12) and tumor grade is intermediate and tumor size 16 mm. My mom has ongoing complications after receiving radiation, carries an inhaler, and gets bronchitis frequently. I know imaging has improved since she was treated, and my anatomy is favorable for the treatment, but I can't shake the feeling that I would rather risk a tumor recurrence than know I will have scar tissue in my lungs. I need to decide this week and am having trouble with the decision. I am pursuing serious lifestyle changes and holistic treatments and feel very good about the changes I'm making, so I feel like I'm in a slightly different category in terms of overall health than people who may not believe in these treatments or have the ability/time/money to implement them.

I'm curious if anyone with complications would go back and do it differently if they knew they would have these complications?

Lily55

I was 55 when I had radiotherapy so a lot older than you, but for me the answer to your question is no I would not have it if I could decide again, I bitterly regret it, and am now never without discomfort to pain in the radiated area, not even a minute..........and I work to exerise and stretch that area all the time, nothing stops i

leggo

Our situations are different Alaskagal (initially diagnosed Stage 3, progressed to 4), but that's a question I've asked myself many times. In hindsight, no, I would not have had the treatments. Knowing now what I didn't know then, I would have done many things differently, but I was scared to death of the word "cancer", had a brand new baby and just sat there in a state of shock while doctors led me around by the nose. I truly was a deer caught in headlights. I can't believe, to this day, I allowed it, or come to regret it, it's just not like me, but frankly, I shut down when I got the initial diagnosis. I was much less naive, more prepared and stronger for round two.

Good luck with your decision...it's a big one for sure.

kurkuma

AlaskaGal

I refused radiotheraphy, because I dont believe in it... And now I am waiting what will happen...

I am sorry for my English, I am not an English native speaker.

Brutersmom

I finished radiation therapy for breast cancer 2 and 1/2 months ago. I started having breathing issues about 2 weeks ago. (I have cough variant asthma triggers are exercise, cold weather viruses and stress) Didn't think anything of it. I saw my Dr. had a chest x-ray and it indicated possible pneumonia on the radiated side. He seemed to be hedging on the dx so I asked his opinion on things. He showed me the x-ray and said that the recommend treatment was antibiotic and chest x-ray follow up in two months. He does not think it is cancer but does think it might be damage from radiation because of the location. He also gave me two inhalers one is a rescue inhaler, which I have not needed in over 8 years, to use as needed and a steroid inhaler to use every day. I am hoping it pneumonia and it goes away but I am wonder if it is radiation pneumonia what have others experienced. Treatments etc. I like to keep myself armed with knowledge. I find that for me knowledge is power.

Lily55

I still have problems with my right lung, and every doctor I see tells me its from radiotherapy EXCEPT the radiation oncologist who simply refuses to admit it  !!!  Frustrating - if I had known then what I know now I would never have had radiotherapy......I have constant pain in my shoulder, collarbone área, ribs top and bottom, sternum and entire chest área and it has caused problems when I tried fat grafting.......so I am flat, sore, lumpy and never ever comfortable in that entire área............not ot mention the risks of radiation induced cáncer in future

Brutersmom

I have not seen much posted about this on the boards. I did have shoulder, arm pain and rib pain, which started about the same time as the shortness of breath. That has resolved since starting the inhalers. I did not have wheezing just a cough and shortness of breath. The x-ray showed opaque areas in the lower right lobe. Moat of it was in the radiation field and a small amount outside. I was warned by the RO about this possibility but was told it is very rare. I did read that people with asthma and other lung diseases are more susceptible to lung problems after radiation. I guess I will just have to keep an eye on things.

I hate when RO denies a possible problem as a result of rads. Bummer about the constant pain. Hope you can find something to help it.

Lily55

Thanks - its been over 3 years and to be honest nothing touches the pain, so its pointless taking anything, I cannot take anti inflammatories, but I do find taking Curcumin regularly helps but I am truly never ever comfortable or without pain in that área, it moves around so I cannot tune it out.......and its only on the radiated side

ChiSandy

Radiation may have saved my life in the long run, but it is the unwelcome gift that keeps on giving (actually, it started with my SNLB--radiation is more like the box & wrap). It enlarged my mammary seroma and hardened the skin around it, necessitating I replace all my bras with ones even larger (40 I or J) and avoid sleeping on my right side; and it took me from a low risk for LE and gave me both mild cording and stage 0 (posssibly starting to worsen) LE. And this was the shorter, partial-breast protocol--my axilla wasn't irradiated.

Would I have done it again? Probably. But would also probably have gone on a drastic crash diet and aerobics program first to lower my BMI by even a point or two to reduce the LE risk (and would’ve held off buying the bras I currently own).

Lily55

They radiated my axila as well

Brutersmom

ChiSandy, This is not LE which I am sure would make anyone quite miserable. The shortness of breath is good for a couple of hours after the inhaler then it begins to set back in. The pain I had when this started was definitely more like bone pain arms and ribs. Your right about it is a treatment that keeps on giving. I am just praying that it is pneumonia and asthma or if it is radiation pneumonitis, I caught it early enough that it is reversible. Other than dizziness in the beginning which was alleviated by advil and fatigue at the end I had no skin issues or other issues. I did lose 26 lbs after changing my diet in April and I have started to work on losing more this winter/spring but this shortness of breath is making exercise challenging. My axilia was not radiated.

This is one more bump I could do without on this journey but I need to keep plugging. I am just glad I haven't heard the words "Not from the rads". Of course, I don't see my RO for a couple of months and my Internal Med. Dr. seems quite comfortable treating this issue and knowledgeable about the subject.

Would I do it again. Yes. My cancer was a grade 3 and I declined chemo because it was such a small benefit 4% in 5 years 2% over 10 years and as a result my rads were a little stronger than if I had had chemo. I feel like I have to much living to do yet.

Martini

AlaskaGirl, We have almost the same diagnosis and I am wondering what you decided on whether to do rads or not.