LYMPHA (Lymphovenous Bypass) Procedure With Mastectomy?

MinusTwo

LW - congratulations. Thanks for the informative post. Glad things are good for you.

Juju-mar

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

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

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

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

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

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

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

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

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

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

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

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

Does anyone know if Medicare will pay for LYMPHA?

LW422

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

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.