Anyone with lung/heart damage from left breast radiation?

If you want to find problems with any treatment, even with taking one Tylenol, you certainly will by asking for negative reactions to anything.  Just read about the side effects possible from most things all of us take for granted.  The vast majority of persons who have had radiation for breast cancer do extremely well.  And every problem encountered post radiation cannot be contributed to radiation.  I for one am much more afraid of the SE of a recurrence.  There is lots of evidence of that on just about every thread on bc.org.  Those persons who did well after radiation and have gone on with their lives just aren't here to speak up, they are living their lives. 

I am dealing with enlarged heart and fluid buildup after chemo and radiation anyone with experience in treatment and duration of this. Trouble breathing, particularly at night

Just wanted to chime in - I had rads 3 years ago for DCIS.  Never had a problem - got a little tired toward the end but that was it.

Recently diagnosed with Stage 1 in the other breast (left).  Did chemo as an "insurance policy" but dropped out after one session - the side effects were horrible (in a word).  I'm starting rads in a week or two on left breast - I'm not worried, except that it's closer to my heart.  Apparently they set things up so that it is directly away from the heart - hoping that's the case.

Radiation is a piece of cake compared to chemo - where your body is poisoned - and for less of a percentage decrease in recurrence than rads.  I'll take rads any day.  

Deb

I have some lung scarring.  Finished left whole breast rads with boost in February and it was discovered by accident.  Scared the heck out of me!  I went to the ER for a bad allergic reaction and they did a routine chest xray.  The results came up in my online file and it said can't rule out primary lung cancer or metastasis.  I was freaking out of my mind because there isn't a clean margin on my chest wall, and of course it was a Friday nite!  The ER said followup with my primary care doctor for a lung CT.  He said the rad onc should do it.  Rad onc said I should have a pulmonologist do it.  I don't have a pulmonologist.  So my surgeon's office called to schedule my 6 mo. post surgery followup and I asked if she would do it.  She said she could order the CT.  By this point a couple weeks had passed and I still had to schedule the CT scan.   Good thing it really wasn't lung cancer after that wait and playing musical doctors.  Supposed to have contrast...they couldn't get a vein.  Radiologist said BTW we don't need contrast after being stuck repeatedly with uncooperative veins by 2 different techs.  CT showed I have some scar tissue and a bit of fluid around my heart.   Nothing major.  But I started what sounds like a smoker'scough a couple of months ago.  Onc says possibly due to scar tissue but doesn't know for sure.  Still coughing.  It can be quiet for hours and then can't stop the coughing spasms again.  Still a lot of fatigue...from rads or from this crazy cough - who knows.  Sometimes I wonder if all of this is overkill for DCIS, but with grade 3 with necrosis it wasn't worth taking the risk with the lack of a clean chest wall margin. I don't take Tamoxifen though because it only added a 3% reduction in risk factor in my case, and isn't worth the side effects.  I'm not much of a worrier though about recurrence after rads.

Hi, I had a lumpectomy in July for a 1.75 cm DCIS, high grade tumor with comedo necrosis. I'm upset right now because my radiology oncologist told me she could keep my heart, lungs and ribs out of the picture this past Monday, but on Friday when I was about to get on the bed for the simulation, she responded to something I said, by saying that a little bit of the lung and rib would be in the field. That is too scary and concerning to me. I had the simulation, I wish I hadn't because I received 4-5 CT scans during that (a good amount of radiation), part of which may need to be repeated if I get a different doc. I had 4 and 5 mm surgical margins. It stinks because the high grade/comedo aspect gives me a higher chance of recurrence, and some of you have had negative radiation side effects, and I agree, the docs don't tell you everything. I have asthma and I know how scary it is when you can't breathe. My trust has been shaken with this doctor. Maybe I should get partial breast radiation. Have any of you tried that? Any thoughts? I'm trying to figure out what to do, and I'm scared it will come back as invasive if I don't get rads.

There are so many reasons why I should never have had radiation after lumpectomy and chemo:  I had a new primary in the exact location after 4 years; Many problems with reconstruction because of radiation;  Metastasis and scarring in the lining of my left lung last year.  I asked my doctor if radiation could have possibly caused all my problems after first diagnosis.  He said, "Yes, it is possible."

I like your approach Yoga Girl!  I refused a PET CT yesterday and my Onc was bewildered. 

With  ACT chemo behind me (shy of 2 Taxols due to interstital pneumonitis or lung damage with fever, cough and chills), I have bi-lateral surgery scheduled next and then the protocol is for 6 weeks of radiation. I am questioning the radiation. It is my left breast that needs to be irradiated and I am concerned with further damage to my lung. I am a runner and would like to continue my active lifestyle. The Taxol caused my pneumonitis...the Onc said that having the last 2 infusions would have killed me. Lungs do not regenerate and  pneumonitis can be fatal later in life. Weighing risk/benefits is something we all have to do and while I have not decided what to do yet regarding radiation, I know that unnecessary ct scans should be avoided. When you read the data, ct scans are being used too liberally in medicine and I was shocked to read how much more radiation they expose you to. Well beyond an old fashioned Xray. Furthermore, the machines can emit much more radiation than is necessary to acheive the image. Calibration varies so much and the studies I read in JAMA where nothing short of shocking. We all receive huge amounts of radiation through the scans we must have to get the full picture of our cancers and their presence in our bodies...but please question the necessity of each ct scan. Remember that radiation changes our vary DNA and I find it to be yet another irony of our cancer journeys that we must rely on testing that causes cancer to help us learn about the existance of our existing cancers.  Preposterous.

I will ask about prone position rads.   Deciding between 2surgeons now...one is at a teaching hospital with access to rads and pulmonary oncology teams...leaning towards them even though they are 2 hours from me and the other surgeon is well known and local.

best to you all. 

I had 30 rads after left side mastectomy, A/C, taxol/herceptin. I did great throw the whole treatment. Never missed a day of work on the chemo or radiation. Was tired but I pushed through.  Finished the rads in April. I was seeing a cardiologist because of the herceptin. Was having echo's done every 3 months. March (before radiation) my heart was fine (EF 65). In June (after rads) left muscle of heart was damaged and my EF dropped to 40. My Cardiologist thought it might be the herceptin, so I stopped that for 6 weeks, had another echo-damage still there. He did some more investigating and realize it was the radiation that damage my heart. It is irreversible. Now I have cardiomyopathy and am on 2 heart medicines.  Also have lung issues. Constant cough and shortness of breath. And to top it off I have lyphedema in my arm and Frozen shoulder. My physical therapist says it all from the radiation. Would I do it again-I'm not sure. It has been a year since first diagnosis and I thought I would be able to go forward now. But I am stuck with a lot of problems now.

I am at the U and not very happy

I wonder if that is why I have COPD now. I keep trying to get a CXR, but they want more tests, which is just too many $$$. I work, have insurance, & am still paying off my old deductibles.

I go for the simulation tomorrow then apparently due to start 2 days after that. I have been a right royal pain in everyones butt so far and I don't care. I spent the last month reading through this sites discussions boards which meant I had a ton more questions to ask. The oncologist was very helpful but really did downplay the 'side effects' issue but then handed me a massive folder 'you and your radiation' which I brought home and read through.. and yup there are the possible side effects. I asked him about lung and heart issues and was told that was hardly ever.. I am going to be going over the scans and positioning with him..and as i just read above..i may take some pictures now! (Thanks!).

I'd rather be over informed than not at all. I wasn't happy about the 'have to have' radiation (Im glad the oncotype dx score said no chemo)..but its 25% risk of local recurrence with me without it.. and 7% with. So.. and yes don't family and friends get on your nerves when they are almost punching the air saying its a no brainer and 'we' will go for that then. It's all scary.

I'm not even going to start on my thoughts about tamoxifen (Im 43 and premenopausal).

Hi, Caryn - sorry you're here but hope you find info, support and camaraderie that you need here.

Re: tamoxifen - I know several women around your age who are on tamoxifen without any issues whatsoever. Yes, some women have real problems with it, but you rarely hear from them. So, if you're on the fence about taking it, please don't reject it out of hand. You can always go off of it if it makes you miserable. On the other hand, it can make a big difference in how well you do long-term.

Whatever decision you make, I hope it works out very, very well for you. Good luck with your radiation.