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LYMPHA (Lymphovenous Bypass) Procedure With Mastectomy?

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lw422
lw422 Member Posts: 1,409
edited September 2022 in Lymphedema

Hello all. Today I had a meeting with my surgical oncologist to discuss my upcoming single mastectomy. I was kind of bummed to hear that that many nodes will be removed, and mentioned that I have a fear of lymphedema.

The SO said that a plastic surgeon will be called in to do the mastectomy close, and he also does a microsurgical procedure called a "LYMPHA." (Lymphatic Microsurgical Preventive Healing Approach). The procedure is also known as a lymphovenous bypass which attaches the cut lymphatic channels to tiny veins, allowing the lymphatic fluid to drain. She said this procedure will add about 3 hours to my surgery.

I told her that I am very interested in this procedure, particularly since it is done at the same time as the mastectomy and apparently is successful in reducing the chance of developing lymphedema. Has anyone here had this procedure in conjunction with their mastectomy, and how have you fared with this? Would you do it again? Any complications? Thanks for sharing.
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Comments

  • linda2119
    linda2119 Member Posts: 60
    edited May 2021
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    Hi, LW422,

    I was not offered this surgery at the time of my axillary dissection, but I have heard from my lymphedema surgeon Dr. Wei Chen out of Cleveland Clinic that this procedure is very effective at preventing lymphedema. I would jump at the change to have this surgery at the time of mastectomy.

    Look up Dr. Chen's speeches on youtube - I believe he talks about this.

    Hope this helps,

    Linda

  • lw422
    lw422 Member Posts: 1,409
    edited May 2021
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    Thanks, Linda. I will look for the Youtube videos and I appreciate the info. I'm definitely planning to have this as part of my mastectomy surgery.

  • LivinLife
    LivinLife Member Posts: 301
    edited May 2021
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    Really interesting Linda! I was telling my Cleveland Clinic rheum about my persistent cording a few weeks ago ( and it is also much improved) - he mentioned what I'm assuming is the procedure you mentioned. I thought he lost his mind...LOL good to hear something like this really exists!

  • lw422
    lw422 Member Posts: 1,409
    edited August 2021
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    I had the lymphovenous bypass in conjunction with a single mastectomy on Monday. The plastic surgeon was able to find and attach FOUR good channels and I'm so psyched about it. I am hopeful that this preventative step will help prevent me from ever developing lymphedema. I understand that this has become a standard at MD Anderson within the past 6 months, so there is no real historical data at this point. I also signed up to participate in a study so they will be following my progress.

  • LivinLife
    LivinLife Member Posts: 301
    edited August 2021
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    So glad you had such a good experience with that LW! I had never heard of this until nearly a year after my surgery (meaning this past May) and that was from my rheum of all people! This is a great advance!!!

  • minustwo
    minustwo Member Posts: 13,184
    edited August 2021
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    LW422 - So glad to hear your surgery is done and you were able to get this new procedure. I've added this thread to my favorites so please do keep us updated.

    Hope your recovery is going well (and hope we don't have a hurricane coming in). Since you're ER-, are they still recommending hormonals for the PR+? And will you have to have radiation? I think of you often.

  • lw422
    lw422 Member Posts: 1,409
    edited August 2021
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    Thanks, Livinlife! At this point I only know that the attachments were a success; there's no way to know the long-term effects yet but I am ever hopeful! I'm just glad they are working on some solutions for lymphedema.

  • lw422
    lw422 Member Posts: 1,409
    edited August 2021
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    Hey there, -2! I'm feeling every day of my age this week as my surgery took the wind out of my sails. I'm sore and cranky as heck, and these drains are the bane of my existence. My onc still considers me TN so I don't know what the possibilities are for AI except for possibly Xeloda?? (I probably don't know what I'm talking about.) At any rate I have to get through this recovery and on to radiation, so the party is just getting started.

    Hope all is well with you, and I'm watching that stupid storm closely. That's all I need right now is to sit in the heat with these drains... OMG.

    If this lymphovenous bypass will prevent me from having lymphedema it will all have been worth it!! Take care.

  • minustwo
    minustwo Member Posts: 13,184
    edited August 2021
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    LW - fingers crossed.

    Yup the drains are a pain. Don't forget, you can roll your upper half in Glad Press N'Seal and take a shower. No water gets in the drain holes or the incisions. Of course it's impossible to do by yourself.... While radiation brought fatigue, it was for me the easiest of all the treatments. It took longer to get there & get changed every day than for the zap.

    I'm sorry for Louisiana - but so glad the storm probably isn't planning a Houston stop - at least at this point. I've lived her long enough to know how fast they can change.

  • lw422
    lw422 Member Posts: 1,409
    edited August 2021
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    -2... Weirdly, I was able to shower after 48 hours with no coverage at all. I was told to let the warm soapy water run over the wound, rinse with warm water, and pat dry with a clean towel. I look forward to my shower each day. I'm very sore today and hoping things will start leveling off soon. Take care.

  • lw422
    lw422 Member Posts: 1,409
    edited November 2021
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    Just an update to my progress so far. I'm almost three months post-surgery and so far, so good. I saw a PT tech who specializes in breast cancer patients and lymphedema. She took measurements of both my arms and compared them to the pre-surgical measurements. Happy to report that I have no signs of lymphedema even though I had 2 levels of nodes removed (32!!).

    The PT tech told me that most of her patients in the past year have had the LYMPHA (lymphovenous bypass) procedure and she knows of only one who has mild lymphedema. I am encouraged by this but I understand that I am never "out of the woods" where LE is concerned.

    I have been stretching and exercising religiously, and have added a gentle rebounding routine on my mini-trampoline.

    Hoping that others who have had the bypass procedure will stop by to add their experience to this thread.

  • minustwo
    minustwo Member Posts: 13,184
    edited November 2021
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    LW - great news. I too would like to hear from others who had the procedure.

  • lw422
    lw422 Member Posts: 1,409
    edited March 2022
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    Thought I'd update since I'm now 6 months out from surgery. I have kept up with my stretching and exercise, and have added my attempts at MLD (manual lymph drainage) to my daily routine. (Does anyone else feel like their entire life is dedicated to the after effects of cancer treatment???) Since I started MLD, I have noted a bit of a reduction in the affected axilla... that my doctors called "surgical edema" but I believe is actually truncal LE.

    This week I've started a bit of gardening and notice that my affected hand and forearm are "tingly." Not sure what that's all about but keeping an eye on it.

    All this to say that I'm not entirely convinced that the lymphovenous bypass was a success, but I hold out hope that if I am diagnosed with LE that the bypasses will help me control the swelling.

  • minustwo
    minustwo Member Posts: 13,184
    edited April 2022
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    LW422 - sorry, I either haven't been able to get on this site, or have been frustrated with the many problems associated with the new format. So I haven't answered. I did go back for re-evaluation & 6 or 8 sessions with a certified LEPT in Feb & March. And yes, mine is mostly truncal LE. I was surprised by the amount of cording that she was able to resolve that I'd just figure was "my lot" after 7-8 years. If I continue the exercises she gave me, life would be easier.

  • rah2464
    rah2464 Member Posts: 1,192
    edited April 2022
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    lw422 - watch that "tingly" . Have you been fitted for a sleeve and do you wear it when out gardening? It is an activity that can be particularly troublesome. I wear a certain sleeve by Sigvaris along with my Sydney compression bra (Thanks Moth) when doing those activities.

  • lw422
    lw422 Member Posts: 1,409
    edited April 2022
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    Hey -2. I'm glad you were able to get some cording resolved, and yeah... keeping up the exercises certainly makes a difference. I'll admit I've been letting some of the stretching, etc. slide lately. It just gets OLD having to dedicate so much time to stupid breast cancer residuals. Hope you're doing well and having a nice Easter.

    Rah2464--I'm keeping a very close eye on my hand/arm. So far, so good. With all the nerve weirdness after my mastectomy and ALND, it's hard to tell what is a concern and what is just stuff settling down after trauma. And no, I have not been fitted for a sleeve other than being told I "could" get one for flying/travel. (I have not.) I don't wear any truncal compression garments, either. I'm hoping I never need to wear that stuff but only time will tell. I'm just trying to live my life without fear for a change, so if I develop LE then I do. I was getting entirely too wrapped up in the "what ifs" and letting it rule my life. Thanks for your suggestions.

  • minustwo
    minustwo Member Posts: 13,184
    edited April 2022
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    LW - I have a sleeve & gauntlet. I understand what Rah is saying, but I don't wear it much except when I fly. My RO at MDA did a good job of referring me to an "in house" LEPT who did the measurements & ordered the sleeves. In fact more than once since the first set was very uncomfortable. If they aren't helping you with that, I have the personal contact info of the LEPT who is now a supervisor & I can email her. Good to have on hand before you want to travel.

    I don't wear any heavy duty truncal compression, but do take at look at the Wear Ease "Sydney" bra. It doesn't look or feel like a medical garment & is only mild compression - with a very deep "V" neck so I can still wear my clothes. Best of all for us in Houston, it drys in a second. The fushia color makes me feel very fashionable. Not to mention that Wear Ease is a woman owned, USA company with great customer service & a very liberal return policy. Not cheap, but they have specials often. Last weekend was 20% off and free shipping.

  • lw422
    lw422 Member Posts: 1,409
    edited April 2022
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    Hey -2! I have decided to stop obsessing about whether I will develop LE and just live my life. If I notice a problem I'll deal with it then. I no longer fly but if I did I'd probably just buy a sport compression garment as a temporary measure as I have seen recommended here before. The MDA LEPT gave me the measurements and a recommendation for an off-the-shelf sleeve (no mention of a glove) and I ordered it from Amazon. It was far too tight and I just returned it, frustrated. I have since decided that I am wasting precious time worrying about something that may or may not happen, so I finally let it go.

  • homemom
    homemom Member Posts: 830
    edited May 2022
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    Does anyone know off hand if this bypass can be done after surgery? LIke can someone like me, 7 years out, have this surgery now to help lessen lymphedema? I'm constantly stage 1, which I should count my blessings given how many nodes they took, but it can be discouraging when I can't wear certain clothes.

  • lw422
    lw422 Member Posts: 1,409
    edited May 2022
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    Homemom--yes, lots of people have the bypass surgery quite a while after their breast surgery. There is a long thread in this section about the LVA and the lymph node transplant procedure (which isn't done much anymore) that has a bunch of good information. You'd have to go to a surgeon who does the microsurgery and be evaluated, but being a stage 1 LE you'd likely be a good candidate.

    Edit to add: I found the long thread; look here... https://community.breastcancer.org/forum/64/topics/818062?page=1

  • minustwo
    minustwo Member Posts: 13,184
    edited May 2022
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    lw422 - thanks for your answer & for posting the thread. I to have only mild LE, but will be interested in reading.

    How are you doing my Houston compatriot? I think of you.

  • worriedinhk
    worriedinhk Member Posts: 2
    edited May 2022
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    Hello everyone,

    I'm new to this forum and desperately in search of information regarding Lymphovenous anastomosis (bypass) surgery and vascularised lymph node transfer surgery to treat lymphedema. My case is unusual in that (i) the lymphedema (Stage 2 now) occurred in my right arm BEFORE my breast cancer diagnosis (right breast, Stage IIIA, triple negative) and (ii) the lymphedema has not improved at all despite the breast and LN tumors shrinking significantly from my chemotherapy + immunotherapy regime.

    My BS has now recommended the lymphovenous bypass surgery (as the first option) and lymph node transfer surgery (as the second option if no suitable channels are found to be able to perform the LVA bypass) to address the lymphedema but my insurance company is rejecting those "due to lack of acceptable current clinical evidence." The insurance company is saying that "to date, the evidence for lymphovenous anastomosis +/- vascularised lymph node for management of breast cancer-related upper extremity lymphedema is low."

    Has anyone successfully gotten their insurance company to cover the LVA surgery? If so, would appreciate if you could share any tips and/or scientific literature support I can provide to the insurance company to appeal the denial.

    Thank you in advance,

    worriedinhk

  • homemom
    homemom Member Posts: 830
    edited May 2022
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    lw422 Thanks!

  • moderators
    moderators Posts: 8,281
    edited May 2022
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    worriedinhk, we're sorry you have to be here for this, but wanted to send you a warm welcome!

    We're sure some of our community members will offer some insight and advice shortly. Meanwhile, you may find some helpful information on surgical and non-surgical treatments for lymphedema on this page:

    Treatments for Lymphedema

    We hope this helps and we look forward to hearing more from you soon!

    The Mods





  • lw422
    lw422 Member Posts: 1,409
    edited May 2022
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    worriedinhk--sorry you are suffering with insurance woes in addition to cancer and lymphedema. I had no problem with coverage (I'm in Texas and have Aetna + medicare and was treated at MD Anderson in Houston). Does the breast surgeon you're seeing perform the procedure or will you see a plastic surgeon for the microsurgery? It may be that the surgeon who actually performs the procedure has office staff who know exactly how to code the procedure to make sure it's covered. I know that others on the forum have had similar insurance problems and had to keep working the process to eventually get covered after initially being denied. Good luck.

  • lw422
    lw422 Member Posts: 1,409
    edited May 2022
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    Hey -2! I'm doing OK, thanks. Looks like we're going to have a HOT summer in Houston. I'm not on here as much as I used to be, since the forum appears to be dying due to the inept IT "support." Hope you're doing well.

  • minustwo
    minustwo Member Posts: 13,184
    edited May 2022
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    lw422 - Agreed about BCO. I still try to log on every day or so - but again yesterday I couldn't log off. I'm only reading a few threads that are on my favorites for now.

  • worriedinhk
    worriedinhk Member Posts: 2
    edited May 2022
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    lw422 - I saw plastic surgeons for the microsurgery and had it last Thursday. They did the reverse mapping procedure and did not find any "good" / usable lymphatic channels so ended up performing the vascularized lymph node transfer instead of the LVA. I'm disappointed that they had to resort to the transfer instead of the bypass, but keeping my fingers crossed for any improvement. I've read it could take months to see any changes! Will continue to fight with insurance here to try to get it all covered...

  • lw422
    lw422 Member Posts: 1,409
    edited May 2022
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    worriedinhk--Thanks for the update. I hope you're doing OK and I really hope the node transfer is a huge success for you. I think all of these procedures are "iffy;" they just don't seem to have a good, proven fix for LE. It's sad that we have to add insult to injury after battling cancer, but it is what it is. Please let me know how you progress. My very best to you for a successful outcome. Take care.

  • lw422
    lw422 Member Posts: 1,409
    edited May 2022
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    Thought I'd update with a little progress report. It has now been 9 months since my LVA bypass and mastectomy, and so far, so good. I occasionally have a little stiffness in my fingers but that happens on both sides so I "assume" it's arthritis. I have pretty much stopped the lymphatic self-massage since it never seemed to affect anything, but at least I learned how to do it in case I ever need to. At my checkup last week my arms were measured and there is still no noticeable change; my right arm is slightly larger but it is my dominant arm and has always been slightly larger.

    So even though it's really impossible to determine whether the LVA was a success, I'm happy that for whatever reason I have managed to avoid LE so far. I'm living my life normally (as advised by my doctor)... gardening, taking hot baths, not babying the arm at all.