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GRRRRRRRRR I HATE LE..........

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Comments

  • minustwo
    minustwo Member Posts: 13,153
    edited February 2023
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    mamacure - so sorry the mapping was unsuccessful. Yup - all we can do is hang in there.

  • lw422
    lw422 Member Posts: 1,403
    edited February 2023
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    Mamacure--so sorry to hear that your LE is progressing. Have you tried wrapping? I think most people have the best results with learning to wrap with short-stretch bandages and wearing the wrap for an extended time... sometimes weeks. (Taking the bandages off for about an hour a day for a shower and then re-wrap.) I went to PT to learn how to bandage and my husband videoed the entire thing, plus he learned how to do it if I need help. I have only wrapped one time for a couple of days and I don't use night compression since arm still goes down overnight.

    I thought that my lymphovenous bypass got screwed up by radiation since I didn't have ANY swelling until a couple of months after rads. My PS agreed that the new connections may have been adversely affected by the radiation but of course he couldn't really say. It seems like LE and LE treatment is a roll of the damn dice. So unfair that we have to go through the hell of cancer treatment and get this fabulous "parting gift." UGH.

    Hey -2!! How are you these days? Did you scoop some new Sydneys on the BOGO sale? I had to pass though it was tempting; I am short and the non-adjustable straps on the bra are a no-go for me. I need to be able to shorten them and I'm sure I could have them altered, but I have found other stretchy tanks that I wear instead of bras. Anyway, I hope you're doing well. I'm ready for springtime in Houston!

  • minustwo
    minustwo Member Posts: 13,153
    edited February 2023
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    LW - oh yeah, I did score. Since I wear them 24/7 it was a great buy.

    Ugh - the weather. 78 one day, freezing the next. My poor plants don't know what's happening. Looks like it will be 34 again on Friday in my neck of the the City.

  • minustwo
    minustwo Member Posts: 13,153
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    Interesting that the new format shows there was a new post in this thread. Oops - NOT. So maybe this will re-activate

    Now that it's already 93 in Houston, wearing a compression bra 24/7 really contributes to my back itching like crazy

  • lw422
    lw422 Member Posts: 1,403
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    Whazzup with my fellow LEers? Are we all just suffering in silence these days or has the "new and improved" 🙄 forum finally run everybody off? Hope you're all doing well.

  • maggie15
    maggie15 Member Posts: 995
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    Still here and holding but things are quiet theses days.

  • mavericksmom
    mavericksmom Member Posts: 1,199
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    Hi lw422! Hi maggie15!

    Ironic that you posted today lw! I actually searched for this earlier today, just to vent.

    Long story short, I decided not to do anything for my lymphedema. Leaving it alone has worked for me for the past 10 years or so and I am at a point where I feel "why rock the boat now?'

    I like my PS who is a lymphedma specialist, but I don't want to do the surgery he suggested for me. My LE is too far gone now to simply "fix" with node transfer or other surgery. My PS wants to do two operations, one liposuction of my lower arm with venous drainage, one liposuction of upper arm and venous drainage, but was upfront about my need to keep garments on 24 /7 after that. I can't……..I don't want to, do that!!!!

    I had liposuction on my abdomen when I had my implant put in and that area is still sore, two months later!

    How are you both doing? So glad you posted this, and glad you responded to it, maggie!

  • lw422
    lw422 Member Posts: 1,403
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    Hey @mavericksmom ! How are you these days? I hear you on the garment thing; seems like when I wear a sleeve it always makes things WORSE for me. If I wear a sleeve, the fluid seems to back up in my axilla and around my shoulder blade which is miserable. For the most part, I'm not wearing any compression and though my arm will swell during the day it shrinks back down overnight. As long as it stays soft and will drain (somewhat), I'm not going to do anything else, either.

    On that note, I am considering a prophylactic mastectomy on my good side. Having one D-cup breast has become really annoying and I can't seem to find a solution for that with bras, prosthesis, etc. The only thing that keeps me from having the surgery ASAP is my fear of having LE on BOTH sides. 😫 I don't know why our "choices" always suck.

    Take care and keep in touch.

  • maggie15
    maggie15 Member Posts: 995
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    Hi mavericksmom, My LE has remained in my breast so far. I do exercises and manual drainage to try to keep it that way. I turned down my breast surgeon's offer to do a nip/tuck on my other size for symmetry since I don't want to risk LE/pain there even though I know mine was caused by radiation.

    I'm with you on not rocking the boat. I'm dealing with pulmonary issues (also from radiation) and figure I don't need any more on my plate. I hope your LE remains stable and your abdominal pain improves.

  • minustwo
    minustwo Member Posts: 13,153
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    I'm still here too - just not very often. My LE is still mainly breast & truncal - although I do have some issues with my upper arm on the side that had ALND 2 years after the original bilateral mastectomy.

    LW - I totally agree about one D breast. I am soooooo glad I had both of mine off the first time out. I've now had the 410 implants for 12 years, but like you - am a bit leery about more surgery that may cause more LE.

  • mavericksmom
    mavericksmom Member Posts: 1,199
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    Thank you both! Lymphedema is horrible! lw, you shouldn’t have to worry about lymphedema with a prophylactic mastectomy but reality is that you know it’s a possibility!

    I had a mastectomy in October and so far my arm is just fine! I had two nodes removed, both negative.

    As for my abdominal pain, I don’t know when it will get better. I do get concerned that there may be more than just normal soreness going on, but then I tell myself not to worry about that. I feel like my fear of metastatic disease makes me paranoid. Of course, having had a new breast cancer three times, I can’t help but fear cancer!
    It’s like waiting for the other shoe to drop!

  • mavericksmom
    mavericksmom Member Posts: 1,199
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    I just listened to the webinar on lymphedema. It was good for newbies, or recently diagnosed. I knew it most likely wasn't going to offer anything for someone like me who has had it for 20 years, but I hoped I might learn something. Nope, just same old "doesn't apply to me" information. Oh well, I tried!

  • maggie15
    maggie15 Member Posts: 995
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    mavericksmom , I didn't tune in because I figured it would be good for newbies but not those of us who have been dealing with it for a while. We are motivated to search for more than the generic information since we have tried all that before. I'm glad I didn't miss anything.

  • mavericksmom
    mavericksmom Member Posts: 1,199
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    You certainly didn't miss a thing! I saw my breast surgeon today, he totally dismissed my concerns about small lump at my breast bone (I guess he didn't feel it) and my bone pain. Ugh! Now I will wait three months to see my MO. But, he was very interested in what I am doing for my lymphedema and when I am seeing my PS/lymphedema specialist again. Double Ugh! I don't think he was happy when I said I will see him in September but that I don't plan to do anything about it.

    I was hoping by being part of the webinar that I would find out if having Lymphedema that goes from fluid to enlarged fat cells always gets worse. No answer for that. I honestly don't know what to believe any more. I am giving up on treating my lymphedema.

  • phongvan
    phongvan Member Posts: 1
    edited June 2023
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    Sharing with the difficulties you are facing, my best friend is also suffering from this disease and she is also in a lot of pain, then she turns to light walking and yoga, her condition is improved. Good luck!!

  • lw422
    lw422 Member Posts: 1,403
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    MM—I honestly don't believe "they" have any idea whether LE will get worse. They can't predict who will get it at all, and as you know, each of us seems to have a different experience. Some people are "compression sensitive", some get good results from self-massage, some don't seem to get relief from any of the accepted treatments. Doctors just swept LE under the rug for too long, patting our heads and offering no real treatment/cure as though it was all in our minds. Most of us would never have even heard of LE without this forum, because we certainly didn't get any warning from our doctors. It's very frustrating.

    Of course I don't really know, but I tend to believe that if you haven't had any significant progression in 10 years, then you probably won't. But I'm clueless and just guessing. I totally agree with you about wearing compression 24 hours a day for the rest of my life… it's just not going to happen. Those stupid sleeves are torture for me.

  • lw422
    lw422 Member Posts: 1,403
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    @phongvan — bless you, that looks really uncomfortable. Thanks for sharing the picture.

  • mavericksmom
    mavericksmom Member Posts: 1,199
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    lw422 thank you for giving me your opinion! I feel exactly the same, that they can't predict if a person's lymphedema will get worse because each person is different. My arms are similar to phongvan's arm except my hand isn't quite as swollen but my forearm is much more swollen. I have had lymphedema for 20 years the last 12 of which were untreated and they remained stable.

    I think it is anyone's guess as to how it will progress. I truly feel that for me, the best thing is to leave well enough alone and I don't plan to have any surgery. As I told my BS last week, I have total reverse replacements in both shoulders. My orthopedic doctors told me to avoid infections at all cost because getting an infection in my shoulder would mean losing my arm! Of course, if I decided I wanted the lymphedema surgery in the future, I would definitely get my orthopedic doctor's approval first!

    BTW Youtube video's from Stanford University on Lymphedema research does show great promise for lymphedema patients in the future…………just not in my furture.

  • minustwo
    minustwo Member Posts: 13,153
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    Maverick & LW - good discussion. I agree - no one warned us and there's little that can be done. My LE is mostly breast & truncal. Since I started water aerobics the first of this month, I can definitely tell that the LE is more active. It's been waking me at night lately. Of course sitting in a recliner reading over the winter didn't cause any issues - but not good for the rest of my health, including bones.