Topic: Reconstruction With Lymphedema

Barbara, it's certainly more of a risk than doing these things without the stupid lymphedema. The risks are heightened infection risk and slow or impeded healing. It may also make the lymphedema worse, at least temporarily, since post surgical swelling is a given. Surgery creates scar tissue that may further block lymph flow. I sorry that I don't recall if your LE is just in your arm or if it's in your chest, side or back as well, but one concern with the latissimus dorsi would be LE developing in the back and sides -- and of course in the new breast as well, which would be disappointing, to say the very least.

On the other hand, we each have to make the decisions that are right for us, and only you can weigh those risks against the results you hope for.

As for your onc...well...our oncs and surgeons are not taught a lot about the lymph system and for sure don't consider it a part of their specialty. Sort of an odd thing, if you ask me, but it is what it is. At the bottom of this page there are some suggestions for surgery in an area with LE or at risk for LE:

http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

Do let us know what you discover!

Hugs, and prayers for a comfortable decision,
Binney

  Hi BMac,   I have posted this question on this topic in the past and didn't get much feedback. I have LE in both arms and truncal LE as well.  I am trying to decide what to do.  It's been 2.5 years since my dx and I'm just now wanting to do reconstruction.  My chosen procedure is the DIEP but I am so afraid that my LE will flare up and never get back to where I can live with the discomfort.  I just don't know what to do!!!  I had a consult scheduled in a few weeks with one of the top Docs that does the DIEP but she had to cancel her trip due to a health issue. I have spoken to my LE therapist, Oncologist, and BS about my concerns and 1 out of the 3 said beware! Common sense tells me that there will be inflammation of my LE-this is huge surgery!  Also post op infection is a big concern.  I keep waiting for someone to tell me that there will be no problems but I know better. It's just what I want to hear!  Bottom line is I'd rather remain boobless than to make my LE worse than it already is.  Good luck with your decision/surgery and please let us know how it goes!!!     Katiejane

Just my $.02 worth, and that is not a lot. . .

After my tram reconstruction, and diagnosis of breast/chest and bi-lateral LE, I decided not to have "stage 2" touch up and nipples--just not worth the risk.

But that is just me. . .

I would rather deal with the devil I know than get involved with the devil in the deep blue sea. . .

Just MHO

Edited to add that my "foob" looks great in clothes, including bathing suits, and now that I have the LE basically under control, there is no way I would risk stirring it up again.

But, that is just me.

I respect the decision of anyone who feels otherwise.

Thanks Jane and Nats.  I hear you about the devil you know.  That's how I feel but I so wanted reconstruction and I'm so pissed.  I blame the homecare nurse for my lymphedema; at least she helped cause it by taking my drains out way too early, causing a seroma.

I like hearing success stories like yours Nats but then I worry that I might not be one of the lucky ones.  It's so hard to decide but I'll continue my fact finding mission.

Yes, you have.  My rads were done 18 months ago so I'm well out of the woods.  I never actually thought about wearing the sleeve during surgery but that's a great idea.

I echo what NatsFan said.  I have stage 1 lymphedema.  I had a bilat DIEP (first stage) in late October.  I waited 6 months after rads were complete.  My bad cancer side (left) has the LE, which I attribute to removal of all axillary nodes as part of the MX the previous January, plus extensive rads that were completed in early April.  My LE has gotten no better or worse since the delayed DIEP on that side, as my PS had predicted.  On my "good" (right) side I had a prophylactic skin-sparing mast & immediate DIEP during the same October surgery and have had no LE symptoms on that side ... none of the nodes have been messed with and there's been no radiation on that side.   I'll be doing stage 2 of the bilat DIEP later next month.  I'm willing to risk the chance of worsening the LE because I need the stage 2 for symmetry ... got one breast high & tight, and the other low & droopy.    I just feel like I'll deal with that, if it happens.

I really think the rads are what caused my LE.  All that scarring!  Even though I had full lymph node removal with my mast, I probably would not have gotten LE if I hadn't had the radiation.  My thinking is along the lines of my PS ... that the reconstructive surgeries should not affect the LE, as they are not touching my affected arm or shoulder or axilla area.  Does this make ANY sense??

I did wear my sleeve during my recon surgery.

Thank god for this thread!

Im having my tissue expander removed and implant placed on thursday. I told my massage therapist and she said it MAY worsen my lymphadema....wth?

What am I suppose to do? I have to have this stupid coconut tissue expander out, its been 2 yrs!!!!! I want it out!

I heard the swap is easy ans recovery from surgery is so much better. Im praying my LE doesnt get worse.

I will let my surgeon know and the head nurses prior to sugery about my right arm lymphadema, but thats all I can really do. My compression garment wont be ready by then...should I have my arm wrapped? Or will I be told to take it off because of surgery rules? Aaaahahhahahhahah!!!!

Its only 8:48am here and Imm already needing a drink..lol

My two cents - I just had my DIEP surgery 18 months after my original mast. on the left side. (had a prophylactic mast on right so matching small foobs now) Rads definitely made my le worse.  I dealt with all of it, but really hated being lopsided.  While I totally agree that this is a personal decision on what new risks to take on - my PS did a lot of scar tissue removal when he did the diep which I'm hoping in the long run will reduce flare ups.  Also, he found a seroma and removed that - so overall, I'm extremely pleased.  I agree that surgeons and ocon don't seem terribly knowledgable on LE, and I wish I'd worn my sleeve during surgery.  My surgery was 10 hrs - it's been 18 days and I'm amazed at how well the body handles everything.  I'm planning to go ahead with the tweaking in 6 months....one final note - I have a tremendous amount of confidence in my PS which makes me more comfortable. 

This is off topic and I know that not everyone is on board with the treatment for a variety of reasons, but I was treated with low level laser for my LE and it is now under control, or I guess you could say it is basically gone.  For those who have already had reconstruction and are looking into something that could possibly help with their LE, you might want to look into low level laser.  It is actually being taught to LE therapists through the Vodder School, so you know that there is a great degree of acceptance of it as having the potential to help (and not to hurt if Vodder has taken it on!)

It may not be for everyone, and there are certain screening criteria, but it may be worth looking into or asking about anyway.  There are some other BCO women who have had the treatment and had great success with it.

Just an FYI.

Trisha

I have implants.

 Not a prob.

I had bilat mast & DIEP almost 5 months ago, prior rads to both sides, had truncal and arm LE.  Both arms were used for iv's and my LE flared.  I still have minor truncal LE, nothing compared to before.  My arms are settling down and didn't go up much last week with a 9 hr flight followed by a 6.5 hr flight (wore sleeves). I can still make tight fists so it isn't that bad.

It's a tough decision - get reconstructed and risk worse LE or be unhappy without recon.

For the ladies who are considering DIEP after rads - JMHO but I think the longer you wait, the faster you heal.  I was 13.5 years out on one side and 9 yrs on the other.  The 13.5 yr side healed faster than the 9 yr side (which still has a deep 'rough spot' slightly below where the nipple was).  I did have a minor bleed on the outside of the 13.5 year side and now have those red spider veins ... oh well.

I'm going to "nipple up" in a couple of months, and have a revision to fill in a small dint.  Then I'm done.  I'm a little nervous, absolutely no follow up or treatment and I had a very close margin on my chest wall which can't be surgically fixed.  So how the heck will I know if it comes back ... this was my 3rd primary - results from genetic testing will take a year.  However, I sure won't miss those mammo's .. lol

Saw my LANA certified/Vodder trained LE therapist on Wednesday.  I asked her opinion about using the laser.  Her answer was "no", specifically because there are no empirical studies that prove it works.  

Also, I saw my physiatrist/LE specialist this past Friday for a followup.  I discussed with her my PS's latest ideas for replacing implants.  He said it would be minimally disruptive to my LE, but there were some details that didn't sit right with me. Physiatrist was of the opinion I should avoid surgery if possible and continue myofascial release therapy to deal with scarring.  If my implants remain too painful to live with, I should have them removed without replacing.  I was somewhat relieved to hear this.  My myofascial therapist agreed, and a good friend of mine (who is also a PT/myofascial therapist) did, too.  This eliminates a lot of worry and research.  For now, I'm staying the course, but I know what's best if surgery is necessary.  LE trumps further recon for me.

Thanks, Binney.  Barbara's site is an excellent resource.  It's one of the few places that had info about deconstruction after reconstruction.  Almost everything I found on the internet was related to removing implants after augmentation.

Tina