Starting rads with breast lymphedema...

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jessica13
jessica13 Member Posts: 22
edited June 2014 in Radiation Therapy - Before, During, and After

I have mild breast lymphedema following a lumpectomy and SLNB, as well as substantial scar tissue under the tumor bed from the oncoplastic surgery. I have been having it treated for 6 weeks and it is manageable but I am petrified of how badly radiation will exacerbate both the scar tissue hardness and the lymphedema.

I've had 4x chemo, will have Herceptin for 1 year and Tamoxifen for 5-10 years. Clear nodes, grade 2, triple positive.

What incremental benefit will radiation have?

I am 35 and more concerned about the quality of life, given that I may have to deal with cancer again in my lifetime anyway given statistical odds from my age.

Don't know if I should decline rads or not and time is running out to decide!

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  • inks
    inks Member Posts: 746
    edited February 2014

    Don't think you are running out of time. Don't let doctors push you into something you are not sure of. There are people who get radiation 4 months from finishing their chemo. I am contemplating the benefits of radiation for myself as well. I do not have lymphedema but I do know that adding radiation on top of edema will only make it worse. A woman on my chemo board just posted the link that explains lymphedema + radiation and the risks. I am 37, grade 3, er+, micromet in sentinel lymphnode. I have read so many studies my head is spinning. I think the main reason they recommend radiation for us is because we are under 40 and it will reduce the locoregional recurrence. But the one study I found said that even with the reduction in locoregional recurrence the overall survival was the same. So I am confused. I hope someone more experienced will chime in. I am actually even considering getting a second opinion about the radiation.

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  • inks
    inks Member Posts: 746
    edited February 2014

    Oops, I miss spoke. It said that the RISK of lymphedema is greater if you have radiation on top of ALND. Here's the link

    http://stanfordhospital.org/cardiovascularhealth/lymphaticvenous/documents/FAQs-Lymphedema-Risk.pdf

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  • LymphActivist
    LymphActivist Member Posts: 64
    edited February 2014

    About 5 years ago I presented a poster on Breast Lymphedema and Patient Informed Consent which I believe will answer your questions. The data has been updated in the recent literature, but the ideas expressed are essentially valid. The paper essentially expands on the idea that a patient should be informed by her physician as to the risks and benefits of radiotherapy, and must be allowed to balance between reduction of local recurrence against risk of lifelong breast lymphedema. The study may be found on my website:  http://www.lymphactivist.org/breast_lymphedema-1.pdf

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  • Marple
    Marple Member Posts: 19,143
    edited February 2014

    Jessica, if you post this question on the Lymphedema Forum you may find more help as far as managing it during radiation.

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  • inks
    inks Member Posts: 746
    edited February 2014

    Thank you Lymph, that was very informative and came just in time for my Mondays appointment with RO.

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