Radiation - how risky for LE sufferer?

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CherryHill
CherryHill Member Posts: 42
edited September 2014 in Lymphedema

I had a lumpectomy with 16 nodes removed. Surely enoughI developed a LE..

Now I have a choice to either do a mastectomy and no rads, or avoid additional surgery and go through radiation. RO says LE shouldn't get "much worse" but I am concerned. From real life experience, did anyone have their LE progress after radiation?

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited September 2014

    RO  and any other Docs don't know much about LE. Unless he is LE savvy don't trust all what he says. I am interested what some experienced girls here have to say.

    I gotta say rads leaves your chest kinda leather like and  rads can fry up some of your remaining nodes that we have in our breasts. 

    Oh do keep us posted and welcome to the boards. We have some real smart LE cookies here.

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  • doxie
    doxie Member Posts: 1,455
    edited September 2014

    My LE is very mild truncal and upper arm.  Rads stirred it up a bit with inflammation, but I think it returned to its pre-rad state.  Nipple reconstruction with tattoo was much worse.  

    I just have to say that the breast that received radiation is not like leather at all.  It is baby soft and smooth, even where I got boosts.  Softer than my other breast because there is no hair on the radiated one.  Maybe my lymph nodes are equally unaffected.  

    My RO was very concerned about the after effects of rads, so treated accordingly.

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  • clarrn
    clarrn Member Posts: 557
    edited September 2014

    Interested in this question too.  I had BMX but also need rads due to positive DCIS margins and lymph involvement.  Currently moderate truncal and mild upper arm LE.  Plan to do my physio and wear my sleeve during rads, anyone know if I should be wearing a compression top or will I be too sore during rads?

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited September 2014

    I think u need to go to the other LE threads

    There r pros on there who can give u the best advice

    Binney and Kira work in that field and they can advise u

    Also there r others who have been on for quite some time with lots of info.

    I have stage 0 LE that I got from the rads.

    I read once that stage 0 is worst then all the other stages cause u don't think it's serious

    I do and I take very good care of this disease that the drs don't no much about...

    I think one of the best threads and the longest is Grrr I hate LE...

    Check it out and come back with good news

    Good luck

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited September 2014

    Doxie, nice you had a super rad guy. I wonder if my skin is so leather like looking and thin skinned due to having the most rads and boosts a person can be allowed. 

     Ugh. We are all so different. I want your soft breast! Actually I just had a good feel of it and it is pliable but it is certainly different than my prophy side.

    clarn. Re shirt: It will depend how tender you get. I split a tee shirt lengthwise to make it blouse like,so that when no one was around I exposed my chest so the material would not rub on my skin. I also went shirtless in the house and let my meds sink in and not rub off on the shirt. I didn't need compression tee until a few years later. Maybe start off with one and see how it goes as time passes.

    Firecracker. Yah those girls are just tops. They have been around the block a few times. Don't know what I would do without the experts.

    Your so smart to watch that early stage LE. Some say it can be reversed but not once your staged higher.

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  • sandcastle
    sandcastle Member Posts: 587
    edited September 2014

    I, did not have rads......but yesterday I did have surgery on my hand...this was on my lymphedema arm......it was a must...for a small mass developed on my index finger palm side....about the size of a pea........so far I am doing well...liz

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