Lymph bypass surgery for mild LE?

buttonsmachine · April 2019

Has anyone ever done lymph bypass surgery (LVA) for mild lymphedema?

I recently started developing mild arm lymphedema. I do all the stuff I'm "supposed to do" to manage it, but honestly I don't see much improvement. For me it's a big problem due to my hobbies, and I'm really afraid it will worsen.

I'm interested in this surgery, but I seem to be getting the run around. I don't know why. I just want to talk to this other Dr and see what the options are. Some providers dismiss my LE as "not that bad" even though it's already bad enough to me. Also, why wait until it's done irreparable damage to try to fix it? That makes no sense to me. I wonder if insurance might be the real issue here, but I don't know.

Anyway, I'd love some insights from you all. Has anyone done this for mild lymphedema and seen improvement or totally reversal of LE? Were your doctors supportive of this?

amygil81 · May 2019

Buttons, I feel your pain. I've been asking about that since I first started getting LE years ago. The surgery wasn't advanced enough then. And it was complicated by my crutch usage, which is probably what triggered my LE in the first place. Now the surgery is further along, and some ladies here seem to be happy with theirs. But I've since had my chest wall recurrence, needing muscles and more nodes out, as you did. My regular surgeon says I'd be a complicated case, so I haven't really pursued it. I wish you luck with it, and please let us know what you find.

buttonsmachine · May 2019

Thanks amygil! I hope you find some answers one day too. No one really seems to want to pursue it with me, but they haven't given me a straight reason. I feel in the dark about it, which is frustrating.

It's a fine line. I don't want to get ahead of myself, push for unnecessary surgery, and burn my bridges by pestering my medical team. At the same time, it's my life, and I'm the one who has to live with it, so if there is another way, I want to at least explore the options! It's frustrating. So many of us have lasting problems from our treatments, and then to be told to just "live with it" or "it's not that bad" stings a bit.

We badly need more humane treatments for cancer, and we badly need better treatments for the complications caused by current treatments. Anyway, I'll keep this thread posted if I make any progress or find anything out.

SpecialK · May 2019

buttons - I have had the workup for bypass surgery, and you do have to be a candidate for it, but the surgeon stressed to me that they prefer to do this surgery on those early in the process. Lymphedema is a progressive disease for most so the early fix is beneficial and helpful in preventing a worsening situation. I elected not to do the surgery at this time because I have had a lot of surgery connected to breast cancer treatment, and I have good control with exercise and a lymphedema pump and garments. I was not early in the process at the time I had the assessment, but the surgeon felt I would definitely benefit from the surgery. One thing I would caution is to have a very experienced micro-vascular surgeon do this procedure - there is another thread that has been active that I will link, and it references a couple of docs who have been pioneers in this type of surgery. I think it would be worth it to travel if you can.

https://community.breastcancer.org/forum/64/topics/818062?page=1

buttonsmachine · May 2019

Thanks for the info, SpecialK! Yes, what you say is true. I have wondered if I'm even a candidate - but no one has evaluated me for this, so I don't know either way yet. I know that at my center they do lymphoscintigraphy imaging first. Were there any other tests you did to know whether you're a candidate?

Why does our medical system do things backwards sometimes? I just wonder: why wait until my lymphedema gets worse before I try to do something about it? But for some reason that's what they want me to do. For now I'm just trying to manage it as best I can, but I'll broach the subject with my doctors again sometime soon.

As an aside, I also heard of the possibility of using a few lymph nodes from the flap for breast reconstruction - meaning they would transplant some of the lymph nodes from the DIEP flap into the axilla. Sounds great right? I'm not really a candidate for DIEP right now anyway, but the idea of getting breast reconstruction and fixing the lymphedema at the same time is very intriguing.

Manuella · May 2019

I have stage 0 (pre-clinical) LE and I’m going for sn LVA mid May. My doc (Joseph Dayan) says the earlier you do the LVA, the better. At MSK they’re doing it even before the swelling starts.

SpecialK · May 2019

buttons - I had a physical exam, measurements (I had this workup during a nasty flare) at the same NCI facility where my LE was diagnosed years before and they wanted to compare against my initial measurements, but it is not where I was treated for breast cancer. I also had bi-lateral bioimpedence exams. My lymphoscintigraphy was done bi-laterally as well and I was the first at this center to have an extended test intervals. Do they do this surgery where you are currently treated? I think what sometimes happens is that some docs who are less familiar with the surgeries for LE - both bypass and node transfer - are stuck in old thinking, while the docs actually doing these surgeries are more motivated to get patients the help at the earliest point. It wouldn’t surprise me to see bypass included with ALND in the not too distant future

buttonsmachine · May 2019

Wow, that is such useful information! That's why I thought I'd ask here.

Manuella, I'm glad you're able to get that surgery early on. That's great! Best wishes for your surgery, and please let us know how it goes if you have a chance.

SpecialK, they do this surgery where I'm being treated (I'm at an NCI center now) but no one seems super eager to give me a referral, for whatever reason. However, I'm open to seeking out other options if I have to.

Thanks to you ladies I feel more confident about advocating to see this surgeon! I'd at least like to have a consulation and see what the options are.

SpecialK · May 2019

buttons - I did not seek the referral for bypass - I stumbled on it kind of accidentally, I actually just wanted some acute treatment for this flare I was experiencing. I was told that a new protocol had been put in place at this NCI center to screen all incoming lymphedema PT patients to determine eligibility for advanced testing for bypass candidacy. After speaking with the microvascular PS I decided to do the workup - both to determine if it was a possibility, and because I was curious. The PS was very enthusiastic and wanted me to have the surgery but I was reluctant at that point, I had surgery fatigue - and the stats on the procedure’s success were underwhelming. I may consider it in the future but I don’t know if I would use this surgeon.

buttonsmachine · May 2019

Thanks for the info, SpecialK. I've also heard mixed things about how successful the surgery is - I think for me though, as long as it doesn't make it worse I'd be game.

Unfortunately my insurance requires a referral for everything, but I do feel strongly that I should pursue this. I'd like to at least find out if I'm even a candidate!

Runmommy · May 2019

Hi there,

I’m doing a lymph node transplant this month, and I also have mild lymphedema. My surgeon also confirmed that there are often better outcomes in mild cases, because long term damage hasn’t yet occurred. The screening process involves several imaging tests and overall clinical assessment. Completely agree that some docs might not be aware or believe that earlier is better.

I can completely relate to the feeling of not wanting this to get worse, and that this is already bad enough. I'm also in my 30s and can't fathom dealing with this for another year, let alone the rest of my life. I hope you find someone to at least assess you as a potential candidate.

buttonsmachine · May 2019

Thank you for sharing your story, Runmommy.

I feel that my LE has actually worsened slightly, despite my best efforts. I decided that if they don't refer me to the surgeon here, I'm going to seek an opinion on my own, even if I need to travel.

Can anyone recommend any surgeons or centers that are very experienced with this?

Thank you to everyone who responded, I really appreciate it.

buttonsmachine · May 2019

Also, Runmommy, if you get a chance please let us know how the surgery/recovery went for you. Best wishes for your surgery and I hope it's effective!

Misstic · May 2019

Hello Buttonsmachine,

I live in France where lymphedema is pretty well managed and studied. This is a french woman surgeon who invented the lymphnode graft and teached the technic in USA.

There is something documented here: a lot of women with DIEP flap reconstruction see improvement with their lymphedema.

I don't know if the english translation is available but here it is a video from a french specialist explaining what happen during lymphedema and the problem with fat : https://www.youtube.com/watch?v=fJA5vnH9xsg

For me with 2.5cm difference between my left and right upper arm, here it it what is prescribed to me:

Mild compression sleeve (during night mostly but also during the day if my arm swells)
Lymphatic drainage once a week with a physiotherapist
I also use a cream with caffeine, ruscus aculeatus, panax ginseng, guarana to enhance micro circulation in the skin (twice a day)

I am now at 1 cm difference between the 2 arms.

buttonsmachine · May 2019

Thank you for the information, Misstic! My father speaks some French so maybe he can translate the main ideas for me. That is really interesting that DIEP reconstruction can sometimes help too.

Is the cream you use an anti-cellulite cream? That is mostly what I found when I searched for those ingredients. I'd be willing to try something like that.

Lymph bypass surgery for mild LE?

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