Does Lyphedema spread?

I too would be suspicious that this is "secondary" lymphedema (lymphedema caused by surgery, not a condition that occurs spontaneously without any surgery, called primary lymphedema) caused by your DIEP surgery, and is not related to the sentinel node biopsy during your breast surgery. Because you developed secondary lymphedema in the arm after just one node removed it might be fair to say that this is something you are prone to. I don't have a large number of nodes, a complete dissection on my cancer side yielded only 12 nodes, including the SNB, and I had one node removed on the prophy side and developed lymphedema on both sides. As trishyla said above you should see if you can get a referral from your primary care, but if your reconstruction doc routinely does DIEP you are likely not the only patient with this issue, so it is possible they could do a referral also. In the interests of being thorough I would also see if you can be evaluated by a vascular surgeon for incompetent veins in your legs. I had some swelling in my left foot and ankle that happened out of the blue - enough that I could not wear the left shoe of most of my pairs of shoes. I don't really know if my upper leg was affected - if so, it was mild. Ultrasound indicated incompetent veins bi-laterally and the blood as it circulated down my legs was pooling because the vascular system was not working properly. This can be caused by, and or complicated by, varicose veins. So, if you already have those, that can be an indicator, but I wonder if the DIEP is also an indicator because of the disruption of the normal vasculature. When you elevate and the swelling goes down makes me wonder if this is what is happening. I had both legs treated and the problem went away, but I suggest it not only to potentially solve the swelling issue, but this problem can also cause a clot to break loose and that can be dangerous.

I, too, developed lymphedema in my leg, particularly one side. I had a really bad cellulitis infection in my lower abdomen right after DIEP surgery, and the swelling started after second-stage surgery, where I had liposuction on the thighs to harvest fat for augmentation of the DIEP breast. In my case, I suspect the latter two factors were more at play than the DIEP surgery itself, but I am not a physician. Finally, the lymph massage pattern I had been practicing for truncal lymphedema pushed fluid into the groin area, which undoubtedly, in retrospect, didn't help.

It seems to me the fact that the swelling occurred so soon after surgery would point to lymphedema, but we are hardly experts, and specialk brings up a good point about vascular insufficiency. The two are related and you should get checked. If your plastic surgeon won't make a referral (and I'm with trishyla about the denial factor) then ask your primary care.

amy123, I wouldn't necessarily rule out liposuction because of my experience. In fact, my understanding is that lipo is sometimes used to treat lymphedema. But if you have had swelling, it is probably something to discuss with them. Wishing you the best with all this.