LE and reconstruction

KarenRB

Hi Ladies,

 Anyone have reconstruction AFTER being dx w/ LE?

Did it make your LE worse?

Anyone out there decide not to do reconstruction for fear of making their LE worse?

Any info about which type(s) of reconstruction are better for those with LE?

Thx,

-Karen

djls

I had a right mast. and have not had reconstruction.  I was originally thinking of having diep, but then I developed the le.  At this point, I probably won't have reconstruction.  I don't want to risk damaging any additional lymph nodes.  A diep can damage the groin lymph nodes and that's one of the areas I move fluid to. Scar tissue also interfers with the movement of lymph fluid, so I don't want any other incision scars on my torso.  So, that's my reasoning so far.

dj

carol57

My LE came after my bmx/recon, and while I do not regret it one bit, I can confirm dj's observation that the abdominal scar is indeed a long barrier to moving lymph to the inguinals.  I think kcschreve did some scar work and succeeded in improving that, so there seems to be something we can do about it. I am looking for a good resource in my area to do the same.  Hopefull kcschreve will comment, if she sees this thread.

mrsnjband

I had bmx in 2008 and developed LE about a 1.5 years later.  I orginally didn't want to do reconstruction but rads burnt the mastectomy scar on the cancer side so badly it wouldn't heal.  I started getting cellulitis, frequently.  So I decided to do the bi-lateral DIEP in 2011.  I was concerned about my LE but my doctored didn't seem too concerned & thought it might actually improve as there are lymph nodes in the tissue that is transplanted.  My LE has gotten a little better after the surgery.  I don't seem to have as much swelling as I used to have. 

Katiejane

  I just had my bi-lateral DIEP on July 5th in NOLA w/ Dr Massey. I'm still in the early recovery stage so to I can't really say one way or the other how my LE will be affected.  I still have initial swelling from the surgery itself but I can say it has not worsened. Some days it seems less than others. Dr. Massey wrapped my arm before surgery(she is a CLT) and I had daily LE massage w/ a CLT while in the hospital. I look for a positive outcome and it sure is nice to have the "girls" back!

Mrsnjband,  Have you had your stage 2 yet or are you planning too?  Have you had any re-occurance of cellulitis-I sure hope not.

I will try to post as my recovery progresses and you can also pm me if you'd like more detail.

Katiejane 

kira66715

Katiejane, glad you're recovering smoothly, please let us know how you're doing.

Kira

Katiejane

Thanks Kira!!  It has taken me 5 years to make this decision and like I said, I'm expecting a positive outcome! I will keep you posted!    Katiejane

YYC18tillIdie

Hi All! Just wanted to share. I had bi-lateral Oct 2010. Diagnosed with LE in March 2011. I had my first set of tissue expanders put in in Sept of 2011 (got a flat tire LOL) had new expanders put in April of this year, have had all my fills (900CC's) and am just waiting for my swap out. I have had no adverse affects from the surgery or fills. Summer heat is my only nemesis. My PS is very aware and informed about LE. I have a funky Hot Pink band I wear on my LE side while in the hospital so no BP or pin pricks have ever occured. Having reconstruction for me has been the ONE positive thing that has come from all of this. Even with the "flat tire" I would do it all again. I opted for the expanders as I truly felt for me they were less invasive, and less risk of added trama to my LE side. Hope this info helps. YYC18tillIdie

Katiejane

Well, I said I'd keep you posted-just alittle behind schedule!  I have now completed Stages 1&2 DIEP reconstruction.  The journey began 7/2012 and I can honestly say that my LE is quite a bit less than it was pre-op!  I'm not saying it's gone because as we all know, that doesn't happen but my measurements are down by several cm's and most days it is quite tolerable.  I continue w/ MLD x2 daily, I wear compression sleeves and a Jovi on my R arm at night.  I am also pleased to report that the removal of all of the scar tissue left from the bilateral mastectomy and radiation have made it much easier to move the lymph fluid! And I love my new girls!  Would I do it again? In a heartbeat!!!  It took me 5 years to go ahead w/ re-construction because of the fear I would only worsen the LE!  Just wanted to pass my experience along!   katiejane

Binney4

Katiejane, that is WONDERFUL news! Very hard decision, but such a very happy outcome! Congrats, and continued good health,Binney

hugz4u

I am so glad you took the jump and did it. You are a brave warrior!  I want girls like yours if you are that happy with them! Mine look like flattened grapefruits (round implants that have migrated towards the pits) ugh!!

Katiejane

   Thank you Binney!  It was a difficult decision and I'm not a procrastinator!!!! LOL!!!

BeckySharp

Hugz--You are soooo funny!  What would we do without you?

Katiejane--Happy your decision turned out to be positive!