Radiation induced LE in leg

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exbrnxgrl
exbrnxgrl Member Posts: 12,424
edited July 2015 in Lymphedema
Almost 4 years ago, I had rads to my upper femur, quite close to the groin. It did it's job in rendering a bone met necrotic, hooray! A little less than two years ago, I noticed considerable ankle swelling after a very long flight. I wasn't too concerned and it resolved quickly. Sometime after that, the same thing happened after another long flight. Again, not much concern. Then, it happened again last summer but did not resolve quickly. I saw my doctor and she suggested light compression after ultrasound showed no blood clot. The compression worked fairly well, through most of my school year, but by spring, the swelling was not well controlled and was moving up my leg. With school out, the swelling is less pronounced, since I'm not on my feet as much, but flares on days I am more active. More doctor visits, ultrasounds, vascular specialist etc. Verdict! LE induced by those long ago rads.i was fitted for a custom compression garment (open toe, single leg chaps) and await their arrival. It was interesting to see the consultations between vascular specialist, RO and mo. RO being the final word and saying, yes, rads in that area could induce leg LE (mo thought not!). I have no pain, save for occasional achiness at the ankle and I am grateful that rads killed the met. Still, it's one more unwanted souvenir of bc, and, from a vanity POV, it is ugly! Ah well.

** Ironically, I was very diligent about my arm compression on every flight.
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  • carol57
    carol57 Member Posts: 3,567
    edited July 2015
    Sigh...so unfair and I imagine, so frustrating.

    I'm saddened that your MO didn't think rads could bring LE risk. Tissue damage of any kind adds LE risk.

    Hugs, and here's hoping you're able to manage the leg LE with minimal life interference.
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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2015
    Yes, I love my mo, but she was adamant that rads did not induce the LE. Thankfully, since vascular turned up nothing, my RO's opinion, supported by my PT sealed the deal. Not that I'm any expert, but I suspected it was LE all along. Happily, Target had lots of lovely, comfy long skirts for sale, so I had good summer wardrobe options 😎.
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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2015

    exbmxgrl, how disappointing! But, hey! there's hope for both reduction of the swelling and on-going good control. But you need a plan, and just wearing compression and staying off your feet (impossible when the new school year starts!) are not all the strategies available to you. If you don't have a great lymphedema therapist, now's the time to find one. I too have LE in one leg, and a "toolbox" that includes lots of possibilities for keeping it under control. I wear a properly fitted stocking daily (and I have an Ez-As donner to help me get these things on. For difficult days I use a Juxta-fit leg garment that has Velcro closures, and for nighttime a custom Solaris leg garment that pads my hip as well (extra comfort). For REALLY trying days there's a leg garment for the Flexi-touch pump that helps drain the abdominal area as well. And I learned self-MLD for my leg from my therapist--easier for me than arm self-MLD because I have both arms free to do it! I do keep my leg elevated at night with a pillow, but you can also just elevate the legs of your bed on a two-by-four--even those couple of inches can make a difference.

    As for "vanity" (I'd call it simple self-confidence!), you can purchase day garments that are panty hose and come in several attractive shades. They can look "normal" and control swelling at the same time.

    Please do let us know what you discover. Gentle hugs,
    Binney

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2015

    Sorry to hear that, Caryn. I have similar swelling in an ankle as a souvenir of a fracture and, while not uncomfortable, it certainly IS an affront to one's vanity! I'm rather self-conscious about it in the summer when it's both more visible and more pronounced.

    I hope your new garments help you get it under control quickly.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2015
    Thank you all do much for your concern and advice. The yoga position, legs up the wall, has been helpful too except that my dogs think that means they're free to lick my face. I find it ironic that I focused so much on LE in my arm, which has been very mild and never gave a second thought to my leg. My PT is great about LE and I'll meet with her again when my garments come in. I give her major credit for keeping my arm in check.
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  • glennie19
    glennie19 Member Posts: 6,398
    edited July 2015


    well, you are on the floor,,,, so of course, they need to lick your face!

    Sorry to hear of this Caryn,, LE sucks!!

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2015

    Yes, my cat takes advantage of anything involving body on the floor, too. It makes planks a lot more challenging :). But I'm glad you've found something that helps - and I may try that, too.

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