Can you get lymphedema if you only had sentinel node removed?

I had only three sentinel nodes removed on the right side. I was told I have a very low chance of having lymphedema but at least the first two years I should wear a sleeve and compression bra when I fly.

@cashemire
I read last night that lymphedema responds well to resistance training. I'll see if I can pull up the article again for sharing. In any case, you know what I'll be doing today!

I had virtually all left side nodes removed (they couldn't find a 'sentinel' and now 2.5 yrs later indications of lymphedema only in my left hand. They've prescribed a compression sleeve and glove for 10-12 hrs a day, but I don't see any improvement. I even think it might be making things worse as my hand looks a bit more swollen after wearing these. I read one study that did show improvement in the compression group over a year, but interestingly, 30% of those in the none compression group didn't deteriorate at all...

@celestebradham
I had 3 lymph nodes removed

@anatomary

Mine came up during a flight and trip to Colorado- high altitude. Not bad, but enough to go to a lymphedema specialist-she was an OT. I wear a compression sleeve, and a compression bra ( it’s almost length of a camisole)with swell spot when I fly. Sometimes in the Texas heat I’ll need to wear it do my lymphatic massage. And get out of the heat for a bit too.

Wow - that's an interesting story! I have thought about going to Costa Rica - or even traveling to New Zealand within the next year but your story makes me think twice. Good to know to wear a sleeve even if you don't think you will have a problem! I am happy to hear yours is mild and controllable. Is the sleeve uncomfortable?

I had my lymphedema assessment (L-dex) last week and I am down 2% from previous post-op reading - but still up 7%. I am within a "good range" so I am happy. But I do find it really peculiar to have lymphedema without having had axillary dissection - and I really want to get closer to my pre-op levels. It's my understanding the sooner you reduce, or get lymphedema under control, the better the long term outcome.

As a side note, one of my drain tubes got tugged on and bleed for a day - at removal, and throughout healing the wound was more fibrous than the other side; and it appears more or less to be glued to my thorax. This adhesion lead to fluid build up above and below the incision and puffiness around the tube wound. I didn't worry about it too much because I was a month or so out from surgery and you have to expect swelling. But it looked like an big fat old-fashioned donut - where the donut hole (wound) puckered in. Following my first post-op L-dex and new exercises being suggested, this area ballooned into the proverbial "side boob" - but I referred to it as my pooh belly and second belly button. My lymphedema OT showed me a cupping technique to lift the scar (wound) tissue from the wall and promote draining. It worked - I saw a slight reduction of fluid the next day. She also used kinesiology tape arced above and below my actual belly button to lift the skin (funny, I thought it would compress) from the abdo wall and promote better drainage to my abdominal lymph nodes. I was just starting to loose the abdominal pooh- belly and now it is back! I suppose it's better to have fluid on the tummy versus a post-op chest or chest wall. Seems many of us never loose the pooh belly and when I told my OT this, she measured my belly so that we can assess fluid movement. I will continue to use the kinesiology tape (shown how to re-tape) and hopefully my abdominal lymph nodes will eventually capture the excess fluid. Time will tell..

I am thinking kinesiology tape could be used on the limbs if compression sleeves are uncomfortable, etc. My next appointment is in mid-November and I'll ask my OT - maybe not; maybe it is only suitable for mild lymphedema. Good to luck to all resolving any continuing issues -

I had bilateral stage 1. I had only the sentinel lymph node removed on the left side. They told me I had about a 3 percent chance of getting lymphedema (and said really only 1 percent because I didn't have any other issues). I got it after a trip to Costa Rica a year after surgery. I flew without a compression sleeve (didn't think I needed to worry), carried a 5 pound camera around, and visited an area at 10,000 feet. It was hot and humid. I may have gotten it eventually anyway, but that seems to have brought it on. Mine is very mild. I also had trouble "mapping," which is when they inject dye to look for the sentinel lymph node, so I am curious about whether that means I was more likely to get it. I asked, but they didn't really seem to know. The good news is that mine is mild and controllable by wearing a compression sleeve 8 hours a day. No swelling, but I notice the discomfort in my forearm and hand if I don't wear the sleeve regularly.

I had my first surgey over 30 years ago when they used to remove as many lymph nodes as they could reach and never developed lymphedema on that side. Years later had sentinel node dissection on the other side still no lymphadema for years. Then a cancerous lymph node under that arm needed surgery to remove it and radiation and the surgeon told me “we have set you up for lymphedema “ and it was true. Have had all kinds of massage, wrapping and I use a pump daily and always use a compression garment-even one for sleep and there is little improvement & no cure. I live in NY where there are many treatment options.

I had 3 nodes removed 23 years ago and no lymphedema !

My Physical Therapist also used a Sozo machine twice, over two years, to see if there had been any change. So far, I don't have lymphedema, but the person who talked to you needs to be informed of the true facts, so the women can be proactive dealing with this very real situation!!!