Lung Effects of Treatment - Anyone?

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strngwmn39
strngwmn39 Member Posts: 77
edited June 2014 in Triple-Negative Breast Cancer

I was diagnosed 2 years ago with TNBC, had dose dense AC, followed by T. Because of BRCA2+ I had a double mastectomy followed by radiation to the chest wall (special protocol for women in their 30's). I'm now 41, and 1 year from finishing chemo (yes, for the last 7months) I've had breathing problems which are getting worse. I have chest pain, tightness, breathlessness on any type of exertion and fatigue that is worse than any tiredness I had during chemo, if you can believe it. 

I have 2 spots on my lungs, which are not active, ground glass opacities on both lungs, radiation damage on the left side (where I was treated), and during treatment I had multiple pulmonary emboli - and my pulmonary function test shows obstructive disease. But my oncologists say my symptoms are not due to cancer (really, I think the drugs and treatments I received caused this!) and my pulmonologist says that no one factor is causing my symptoms.

In the meantime, my primary care doctor has started me on prednisone, which isn't helping, yet. I understand that my problem may be due to multiple factors, but has anyone experienced this?

It's frustrating because I'm so tired, and I can't breathe, and no one seems to really care. My cancer doctors seem to think I should just be happy I'm alive. I felt fine for several months after treatment, and then this hit - that's what really stinks.

Thanks.
Michelle 

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  • jenn3
    jenn3 Member Posts: 3,316
    edited March 2011

    I don't have experience with this, but a good pulmonologist should look into the breathing problems.  I would see another pulmonologist to make sure you are taking in enough oxygen.

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  • jo1955
    jo1955 Member Posts: 8,543
    edited March 2011

    I have not had experience with this either but you may want to see another pulmonlogist and talk about the possiblility of radiation pneumonitis.  This is rare but can happen and if left untreated could lead to pulmonary fibrosis which is irreversible.  I would not wait as radiation pneumonitis is very treatable at this point.  Best of luck to you and I hope you find relief soon. 

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  • elliemay1030
    elliemay1030 Member Posts: 16
    edited March 2011

    My PT has me doing deep breathing to expand my lungs after radiation.  I just sit at my desk and breath as deeply as I can feeling the stretch, then exhale.  I would get a second opinion-  Hope you find some answers

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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2011

    strngwmn - rads certainly can cause scarring of the lungs... but the thing that I am concerned about in your case is the possibility of congestive heart failure. Have they done a MUGA scan on you? Or any other type of cardiac testing? Adriamycin has the risk of being cardiotoxic. Not everyone has this as a side effect - but it is still there. Signs and symptoms of CHF include fatigue (an early sign), swelling in the lower extremities (feet, ankles, legs) and abdomen, shortness of breath, difficulty breathing when laying flat, increased urination, nausea, abdominal pain and decreased appetite. You don't have to have all of these symptoms - but having more than one may be a good argument on your side for some testing. Maybe you could ask for an echocardiogram and a chest x-ray??? The other thing I worry about for you is the possibility of another pulmonary emboli, since you said you had several during treatment. Have they done a VQ scan on you to rule this out??? Good luck to you and keep us posted.

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