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LYMPHA (Lymphovenous Bypass) Procedure With Mastectomy?

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Comments

  • minustwo
    minustwo Member Posts: 13,157
    edited May 2022
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    LW - congratulations. Thanks for the informative post. Glad things are good for you.

  • juju-mar
    juju-mar Member Posts: 200
    edited May 2022
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    I had a lymphovenous bypass along with my right side mastectomy in April 2021. I did have some cording a few months after surgery, but saw a PT who specialized in lymphedema. I've seen her offand on as needed since last September. I had to wait til skin healed from radiation. I have had no other issues. Use that arm, do your stretches, don't smoke, keep your weight at a healthy number and you'll decrease the chance of lymphedema. Good luck!

    Julie

  • lw422
    lw422 Member Posts: 1,404
    edited August 2022
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    Well... this month is a year since my surgery and SURPRISE!! Today I was "officially" diagnosed with LE. I have had some minimal swelling in my forearm and ring finger for a while but it would come and go. I saw the plastic surgeon who performed the bypass and he said I definitely have LE, probably because I had 33 radiation treatments after the surgical procedure. He said that he believes that radiation is a huge factor in the development of lymphedema, and that some rads can cause significant damage to lymph channels. So naturally the best outcome for the bypass performed during mastectomy is expected for people who DON'T have radiation treatment after the surgery.

    I will be seeing the LE PTs again to learn how to wrap and other fun things. I will also have a consultation with a surgeon who specializes in LE procedures to discuss possible additional bypasses in my arm. I'd like to have a tantrum but I suppose I'm not really surprised. After losing 32 nodes then rads I was pretty much doomed. Dang.

  • rah2464
    rah2464 Member Posts: 1,192
    edited August 2022
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    Ugh sorry to hear this lw422 was hoping you could avoid it. What I am finding with my LE is that it is episodic (at least for now). I use this arm pretty hard as I live on a farm. Sometimes I get flare ups and haven't always been able to determine the root cause. I can have periods of time where I don't need compression sleeves or gauntlets as long as I wear supportive gear when I am taxing the arm. Interestingly enough driving counts as taxing for me. I must grip that steering wheel ferociously ha

  • lw422
    lw422 Member Posts: 1,404
    edited August 2022
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    Thanks, Rah. I was hoping I'd avoid it, too!! I still believe this is a huge step forward for many BC patients and I hope the availability of the procedure will be widespread, because it does have a high success rate in many patients. I am pretty much resigned to my fate at this point, and hoping I can maintain at a somewhat mild case of LE. For anyone considering the LVA, I still recommend it. ANYTHING is worth a try to avoid lymphedema.

    This pretty much cements my decision to not go forward with prophylactic mastectomy of my healthy breast. I'm not willing to take any chance that I might develop LE on both sides. Just not going there, so I'll be lopsided and learn to like it.

  • minustwo
    minustwo Member Posts: 13,157
    edited August 2022
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    lw - so sorry to hear it caught you. Ugh. But glad that MDA is taking it seriously and you'll get more LEPT. Keeping you in my thoughts!!

  • lw422
    lw422 Member Posts: 1,404
    edited August 2022
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    Hey -2. Thanks; I'm pretty bummed but as we all know, "shit happens." I have a consultation in 2 weeks with a LE specialist at MDA; another plastic surgeon who does microsurgeries. I'm not sure what to expect from that but I'll see what options are available (and probably limited by insurance companies.) I finally ordered the WearEase Sydney and I'm waiting on it to arrive. Might as well accept that "compression" is in my future. Hope things are going well with you.

  • minustwo
    minustwo Member Posts: 13,157
    edited August 2022
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    Hope you find the Sydney as comfortable as I do. And as versatile. The straps might show in 'boat neck' tops, bur I can wear all the low or "V neck" tops I want. Be sure to let us know how your consult goes in 2 weeks.

  • lw422
    lw422 Member Posts: 1,404
    edited September 2022
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    I was supposed to have a consultation with a LE specialist at MDA last week to discuss additional bypasses in my arm, but after waiting an hour and a half to see him and then being informed that the wait would be "at least" another hour and a half I decided to cancel and leave. I was quite pissed that a surgeon has so little regard for his patients. A young woman (whose appointment was an hour before mine and still waiting) said she had been there weekly for the past 3 weeks and EVERY SINGLE TIME had to wait over three hours. Maddening that some doctors have zero respect for their patients. (And this was at MD Anderson where everyone in that waiting room has cancer; some appeared quite ill and had no business having to wait that long. Unacceptable!)

    So I decided I'll just try to manage this on my own and with PT assistance when needed. I might go see a different PS at some point when I get over feeling slighted by someone in a white coat with a God complex.

    Minus 2--I did get the Sydney bra and honestly I wish I had returned it. I'm a "petite" (SHORT) and the non-adjustable straps are a bit too long on me. I do not believe the bra is worth the price they charged for it, and I'll have to figure out how to alter the straps. I do like the full coverage back, though.

  • minustwo
    minustwo Member Posts: 13,157
    edited September 2022
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    LW - sorry the Sydney didn't work for you. If you've only worn it a couple of times, I'd give them a call & talk about it. I know it says no returns after you've worn it, but this sounds like a special circumstance. And they certainly have other "short" customers, so maybe some ideas.

  • lw422
    lw422 Member Posts: 1,404
    edited September 2022
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    Hey -2. Nah, I knew their return policy when I wore the bra, so that's on me. I just won't be buying any more of that style. Hope you're doing well these days.

  • rah2464
    rah2464 Member Posts: 1,192
    edited September 2022
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    lw sorry that didn't work out for you. I just ordered two more during the sale. They are a must for me when I need to be doing physical labor such as mulching or mowing.

    They are very helpful and knowledgeable there - perhaps if you explain your sizing dilemma they can point you to a garment somewhere that would be more useful.

  • minustwo
    minustwo Member Posts: 13,157
    edited September 2022
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    lw - just posted on another thread about the Belisse bra. Although it is more expensive than the Sydney, I remembered it does have velcro closures on the straps to adjust for shorter or longer torsos.

  • mavericksmom
    mavericksmom Member Posts: 1,205
    edited September 2022
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    Does anyone know if Medicare will pay for LYMPHA?


  • lw422
    lw422 Member Posts: 1,404
    edited September 2022
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    Thanks -2.

    MavericksMom--I have Aetna Medicare Advantage and it did pay for my LVA in conjunction with my mastectomy. I don't know if they will pay for additional bypass surgery, though.

  • mavericksmom
    mavericksmom Member Posts: 1,205
    edited September 2022
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    Iw422, thank you once again for that information! I am a complet wreck worrying about what my Medicare Advantage plan will and won’t pay for because even when I speak with my insurance representative they don’t always seem to know the answer. Medicare doesn’t pay for much when it comes to lymphedema.

  • lw422
    lw422 Member Posts: 1,404
    edited September 2022
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    MM--I think the main thing is that the surgeon/hospital staff know how to code the procedure for billing. You should probably discuss getting pre-approval for the procedure (with the surgeon) so you won't have any surprises later. Good luck, and you are so right about not having sufficient coverage for LE with Medicare. I have written to all my representatives in Congress to complain about the lack of support for LE patients and hope that some action will be taken if enough people will speak up.

  • mavericksmom
    mavericksmom Member Posts: 1,205
    edited September 2022
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    Iw422, I told my doctor today that I will not pay for anything Medicare won't cover! He said he has gotten them to pay for the bypass surgery, but even when Medicare didn't cover a procedure, the hospital system he is at didn't go after the patient to pay the bill. That said, he is a young, very nice, enthusiastic doctor who is very much interested in lymphedema. He said, "we will wait on working on my lymphedema arm," but he wants to do the bypass on me to try to prevent me from getting it in the right arm too. I am going to message his office to see if he will get pre-approval from my insurance company for the procedure. He seems confident Medicare will pay, and someone from the hospital will call me to discuss my financial responsibility. I didn't sign anything that said I would pay for it. I am still worried about it. He wasn't even sure he could even do it, he said sometimes the sentinel node doesn't flow to the arm.

  • lw422
    lw422 Member Posts: 1,404
    edited September 2022
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    MavericksMom--hopefully they know how to code the procedure to get it paid. Is this doctor a plastic surgeon? Have you asked him how many of the LVAs he has done? I'm not that knowledgeable about the procedure, but when I had my surgery they used that green dye injected into my arm to see where the microscopic connections could be made.

  • mavericksmom
    mavericksmom Member Posts: 1,205
    edited September 2022
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    iw422, I messaged my plastic surgeon asking if that procedure would be pre-authorized. They are quick to respond to messaging so I should know tomorrow or Monday.

    My PS is very experienced in that procedure. He told me about how he maps the connections. I don't remember him saying a specific color but he did mention dye.

    I guess I should take lymphodema seriously, but it is hard to do that after living with the disease for almost 20 years, most of those years without wearing garments. My body apparently adapts to all this abuse it gets. Yes, my left arm is twice the size of my right, and yes, I always wear long sleeves when I am anywhere other than home, but I haven't gotten sick from it, I haven't gotten infections, I must have a good immune system since I have literally been around hundreds of positive Covid people, albeit I mask, and never got Covid. I probably should tempt fate saying that! I only ever got the flu once. I keep my opinions to myself and don't share with my doctors. It isn't what I would tell anyone else to do, but I found over the years if I listen to the doctors, nod in agreement, but then do what my body tells me to do, or not to do when I get home it's all good. Of course I don't do stupid things, but I know my limitations. My only fear is getting an infection in my replaced shoulder area and losing my arm. Lymphedema won't do that, but a bacterial infection could.

    I am so tired of all things breast cancer. I apologize for sounding less than positive but I guess today I am more annoyed than usual. All I can focus on is how this whole Dx is messing up my life, my retirement plans, my family plans, the support I give to my special ed. students, and I am having a hard time focusing on cancer or lymphedema.

  • lw422
    lw422 Member Posts: 1,404
    edited September 2022
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    MavericksMom--I totally understand your annoyance... I imagine that most people on this forum have had those feelings so we totally "get it." Dealing with treatment, side effects, fear, and never-ending appointments while wondering if we are going to survive is then topped off by worry about insurance and financial worries. To think that this is your THIRD go-round with the horror is just awful.

    As far as lymphedema treatment, I pretty much agree with you. It's just another shit sandwich on the hors d'oeuvres platter of cancer. I am compression sensitive and have not been able to wear any of the standard "garments." (Why do I hate that word??) I was disappointed in the half-assed PT I have received where half my treatment time is taken up by a bunch of TALK and measuring... leaving hardly any time for actual treatment or teaching me how to help myself. But I get to pay those co-pays for that waste of time.

    So far my swelling isn't significant and most people would never notice unless I point it out to them, but I understand that LE is progressive and has to be "managed." Well damn it, I don't want to "manage" it. I'm still pissed that they took 32 nodes from my right axilla and not one of them had cancer. Great! They were all happy about that, never mind that I will be paying the price for that for the rest of my life. Thanks, Doc!

    I'm probably going to be the non-compliant queen of LE. I don't want to wear those stupid sleeves; they are expensive and uncomfortable and I don't want to. I've been doing the MLD and elevating my arm, but I don't want to spend my entire waking hours "managing" this stupid swelling. So girl, feel free to express your annoyance, because we all get it. I'm so sorry you have to go through this again.

  • mavericksmom
    mavericksmom Member Posts: 1,205
    edited September 2022
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    Iw422, we are soooo much alike! They took 24 out of me in 2003, same thing, none had cancer! Don't you just love their enthusiasm when they tell you all the nodes they took out were negative. Then they look they give you when you aren't as thrilled as they are? Those doctors wouldn't last a week with a wrapped arm! After mine were removed, hey still told me I needed chemo, radiation etc. At least now they have Oncotype testing so not everyone goes through chemo. I got the dreaded "red punch cocktail."

    I call surgery, chemo and radiation being mutilated, poisoned and burned.........and I did get burned with jelly bean size blisters! I would NEVER consent to radiation again. That said, my two sisters had radiation after their lumpectomies and didn't have an issue other than redness for a few months. It is just how my body reacts, so yep, I am less than happy about going through all this a third time!

    BTW, I LOVE your description of lymphedema therapy! PERFECT description!!!! I ABSOLUTELY agree!!!!! I went through endless hours of therapy, with about 5 different therapists and it all ended up being a complete waste of time, and definitely a waste of co-pays!

    BTW, so glad you connected with me, you have no idea how much you helped me cope! Thank you!!!!!!

  • lw422
    lw422 Member Posts: 1,404
    edited September 2022
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    Aw, I'm glad we connected, too, MM. It is good that we all have a place where we can come to express our feelings and not be judged. I wish the old "GRRRRRR... I Hate LE" thread was still active. So much good information there that I have read it a couple of times and I feel like I know the ladies who posted there.

    I wish there were more and better treatments for LE. The bypasses and node transplant surgeries seemed to hold a lot of promise but so far I haven't heard of any miracles for us. I figure if Kathy Bates is still wearing compression that there must not be much hope for the likes of me!!

    Take care.

  • minustwo
    minustwo Member Posts: 13,157
    edited September 2022
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    lw - shall we try to re-activate the GRRR thread? I'm up for posting every day to keep it at the top of the 'chain' until enough new people see & join. Of maybe even some oldies would return (the ones who are still fighting their way through the BCO nightmare).

  • lw422
    lw422 Member Posts: 1,404
    edited September 2022
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    Sounds good, -2! See ya over on GRRRRRR...

  • nickel103
    nickel103 Member Posts: 17
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    Has anyone had lymphovenous bypass surgery with a doctor you recommend? I am looking for a surgeon in NY.