Seroma/lymphadema, and surgery idea:

Kitty, I haven't a clue on this one, but I'm glad you posted the question. I'll be attending a symposium given by Dr. Marga Massey, who is a microsurgeon doing flap reconstructions and node transfer surgery, and she is becoming expert in LE.  I am printing this question to bring with me. It is a very thoughtful one!

Carol 

Carol, I'd love to know what Dr. M has to say as well. I had (have??) a seroma in my breast after my Stage 2 DIEP 4 months ago. It's on the side of my full axillary node dissection. They tell me it's very unusual to have one after Stage 2. I'm leaving it alone after it drained only 45cc and no longer seems too full. The surrounding tissue is very firm, which is concerning but not alarming. I do wonder if I have some breast lymphedema. Anyway, my doc is reviewing my concerns. I'm eager to hear what they have to say.

Carol, I think you will find that with her discussion on the muscle sparing flap surgeries, that she feels in a way they have already/are sort of doing node transfer surgeries without that being the primary intention. I cannot explain it well, but the flap taken from the lower part of tummy for DIEP contains a couple of nodes, as I recall. She said that the body's fat contains it's own growth factor that allows the node to "take" whether it is through DIEP or if the node is gently removed from a donor area specifically for transfer in axillary area. She said it is rather amazing to watch the node ends reach out to attach itself in new area. I do not have a background in physiology, and perhaps you can clarify what I understood her to say. The conference I attended in DC was primarily LE therapists and a dr, and she had said material would be a little advanced. So, I will be interested to see whether she presents this aspect in her discussion of node transfer surgery. She spent the morning talking about types of recon, which set up understanding of DIEP, and then afternoon talked about node transfer. 

When I asked her about the research that involves the injection of the growth "stuff" being used in research project (See, Binney? I forget what it was called already!) she wasn't in favor of it, nor was she planning to be part of study. However, she had just become aware of this study shortly before I talked with her at the DC conference. 

What I found most interesting about her discussion of node transfer, was the part where she talks about sentinel and axillary node biopsies. She talked about pigs (in her area they call them "rooters") and how they root for food with their snouts, knocking things over and making a mess in the process. She, uh, said that in some ways breast surgeons are sort of that way when they are looking for nodes that light up and correspond with cancererous area in breast. I found this comparison of breast surgeons to pigs rather humorous, but I digress . .  Anyway, in her work with node transfer, because she wants to avoid causing a secondary LE elsewhere by removing a node, she says they are being meticulous when they go in to inguinal area to take node to place in axillary area (or vice versa). She says that with the node transfers she has done so far, that she has yet to cause a secondary LE where nodes have been removed. However, an additional point she was making is that if all breast surgeons used such exacting care when doing sentinel or axillary node biopsy prior to mastectomy or lumpectomy, then there might be far fewer cases of LE developing as a result.

Tina, by the way, did you type all that while wrapped?  I can barely stand to type with a gauntlet on, so if you are typing all this while wrapped, I triple-salute your commitment to posting such great information!

kcshreve, that's very good news!

Another question I have relates to some of what Tina reported--I do wonder if the transplanted diep fat generates the normal network of superficial lymphatic vessels, just as a network of blood vessel capillaries seems to develop.  It must--otherwise all the flap reconstructions would result in LE of the breast, no?  

So interesting! I want to go to one of Dr. M's Chicago symposiums, but I can't swing this next one. Maybe another time.

With my breast seroma from Stage 2, and the current firmness (and slight redness) I'm wondering if that "new" lymphatic network could be compromised. I have no arm LE beyond occasional tingling and heaviness, which goes away with MLD.

The BS comparison to rooters is funny! And sad at the same time. I had my BMX and AND in NOLA. My op report says Dr. Sullivan (my primary PS) did my AND. He does the node transfers with Dr. M, so I wonder if I was blessed without knowing it - being spared from a rooter. My SNB was done by my BS, so mayb e not.

Yeah, unfortunately, I got the impression the rooting is even worse with a sentinel node biopsy. I know Dr. Massey is following her patients carefully post surgery, because causing a secondary LE in her attempt to relieve first case of LE is something she desperately wants to avoid. I am sure her work is also being watched by others in the medical community who may have concerns about it. However, I do believe she truly has compassion for those with LE and is on a mission to find a remedy or way to minimize causing. Her dedication to LE is amazing, and at one point during her presentation, I was brought to tears just knowing we have someone so skilled, intelligent, and caring on our side.

She does have strong concerns about node transfer surgery becoming a draw for drs who primarily see it as the next big way to make money (like the fat grafting). She said one had already contacted her and asked for instructions for procedure - wanted to know over phone how to do! So, just as there are many docs who do all kinds of recon, with node transfer  (in the future) we will also have to do our research about how many procedures someone has done, their results, etc.

To get an idea of how complex the surgery is, for a node transfer to the axillary area she first goes into the axillary and arm area and removes all the scar tissue. This is painstaking work, has to be done by hand with a scalpel, delicately slicing away the scar tissue and avoiding cutting anything around it. It takes about two hours to just do that. Meanwhile, another surgeon at one point will go into the inguinal node area, which is a really small opening that only one surgeon can even work in, and delicately removes the node. It is then placed in the compromised area, where it almost immediately attaches. She said that patients often see a reduction in volume of their arm before they have even been released from the hospital!

I also found it quite interesting that Dr. Massey is aware of the body's fat having its own growth hormone that aids with the transfer of the donor node, so I am wondering why the need to inject another substance that may possibly have known risks associated with its use? 

Here is a link to the National Institute of Lymphology that Dr. Massey founded and Dr. Sullivan (NOLA) is associated with. I linked directly to the Research section, but there are other areas to read. Carol, I received a brochure with all of this info.

http://www.nilymph.com/ongoing-clinical-research-our-centers-excellence-care-lymphedema

Tina, when I heard Jodi Winicour speak at the NLN conference, she also felt thaat SNB involved more trauma to the axilla than ALND where they just cut and scoop, she showed slides of SNB where retractors were used, and tremendous stretch was put on the axilla.

I've been writing a lecture on LE for breast surgeons (scary) and I found a reference that the cautery in SNB might contribute to difficulties with lymphatic healing.

Rooters! I love it. I wish I could quote her.Just might....

Kira

When I said Dr. Massey mentioned a Dr wanted to know how to do procedure over phone, I think I misspoke. She may have been referring to muscle sparing DIEP vs node transfer. I apologize for my sieve brain. But either way, she said patients needed to do their homework about dr they choose, learn how many successful surgeries they have done that didn't require having to use muscle as backup.




I just thought of something else, but forgot because my wrapped hand cannot type quickly enough! Phooey!




Catherine, I PM'd you.

Very interesting thread here.

My LO in my arm initially went down arfter my Tram flap procedure. I was so thrilled... i had heard of this happening sometimes and thought my days of dealing with LO are over. However over time my arm returned to pre surgery state. It now, 9 months after the surgery, seems to be getting worse and i am sure i also have breast LO. My L Dex has gone from 11 to now 23.

I feel it is because the scar tissue is now developing and blocking lymphatic pathways.

Wouls be interested to hear what others have experienced post DIEP or Tram. 

Just my thoughts... i drive myself crazy trying to work out how to improve things.

Will be very interested to hear the outcome of this symposium Carol.

Kerrie 

Thank you Carol! Your words were a boost. As much as it was obvious to me that I need another revision, the reality of getting it scheduled is unsettling. Maybe because it's not just evening things up, but addressing some problems with a solution unknown to me. I lamented for a bit, walked off the stink, and I'm ready to tackle my next step.