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

I only had three sentinal nodes removed and was told I was low risk for lympasima but got fitted for a compression sleeve when I fly anyway as a precaution. So far so good. I do for for lymphatic massages just to feel good and move the lymph system.

I had a prophylactic DMX (Atypical hypertrophy and LCIS) and no lymphnodes removed. I saw a lymphedema specialist (LDX and measurments) pre -surgery and again at six weeks post-surgery. I had residual lymphedema of 9% in my right and left upper arm. So, it's not just lymph-node removal that creates problems; extensive surgery to the chest wall can contribute because the lymph needs to find new routes into the lymphatic system since small lymph vessels are damaged. Funny thing is (or maybe not so funny) I religiously did my lymphedema, and PT, exercises! At my postope appt. I told the specialists that I think my arms (and toros and thighs which they did not measure) are retaining fluid; these areas felt "heavier' than normal and were in opinion visibly swollen...and jiggly. I am thin and the retention is not unslightly, just annoying - and a little worrying. I am still in the "good range" and the specialist believes the condition is acute - not long term. I am going back in September 24th for 10 week assessment. We added a couple new exercises and more precisely targeted (for compression and massage) the parasternal and paravertebral lymphnodes...I think it's working but it the reduction is slooow. I can report back if people are interested. And yes, the specialist thought it was odd that I was retaining fluid when not having an axillary dissection. Maybe this was before the DMX I had a lumpectomy and the DMX was just over a month later. I teach and asked that the DMX be done asap just in case path came back with another diagnosis and I required further treatment. My goal was to be ready to go back to work -did do!

I have lymphedema in my breast and I did not have any lymph nodes removed.

I had seven notes removed and a right breast mastectomy and have lymphedema and the main cause it seems points toward letrozole that I’ve been taking apparently 23% of people who have issues with lymphedema have been taking tetrazole so you might want to check and see if it’s more due to the side effects of the drug that it is the surgery. I have lymphedema in my right arm and both by legs they double in size when I was on the drug now, they do swell slightly and when I travel, but I wear compression socks, I highly recommend a check side effects of your drug.

I had four sentinal lymph nodes removed. My Physical Therapist, whom I saw as soon as I could after surgery, started measuring several points on my arm. She told me that I should have had pre- surgery measurements done, but they had forgotten to do it. I also was instructed how to do lymph node draining on myself. So yes, you absolutely can get lymphedema from sentinal lymph node removal, only.

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!!!

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

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 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.

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 -