Nodes removed How Many?Have you developed Lymphedema

I had 13 nodes removed over 2 years ago.  No lymphedema.  I take no precautions either, other than no bp and no injections/blood draws on node removal side.  I get cuts on my hand arm (from pets and working outside), get regular manacures when I get them, etc.

I know lymphedema is possible at any time.  I am not sure what the risk factors are, but I know lymphedema can be bad if you get it.

I had the sentinal node removed, plus one more.  I was proactive, and went and got fitted for a sleeve after my BMX, just in case I fly.  But I really don't see any lymphedema. Sending positive thoughts your way

Suzanne

I had 2 nodes removed on 2/14 and developed lymphedema two weeks later.  I had mammosite radiation and my RA says it does not cause LE.  I did probably overdo it because I did not know any better.  I would recommend taking all precautions as there are women on this site who had only one or two nodes removed and have LE.  Becky

Hey Pil........I see the little baby again................Well here is my story..........Had my SNB..the dye did not work, so to be certain my BS took out 8 nodes........all were negative (which is good, but after though said "shit he didn't have to take any), but my kids said "no he was right, he could not be certain they were negative (which he told them after surgery) so he had to play it safe...........Right or wrong, (and I'm sure he was right)..............I have LE.........my arm does not look like a "flipper" as my daughter described seeing it on a friend of hers, but is is accumulating fluid, and I swear the boob is too....................

Saw a Board Certified LE specialist, but she only takes medicare. so I am trying to get Aetna to approve "out of network) care which then will pay for her visits.............I told them I refuse to go to a Physical Therapist, I wasnt a Board Certified LE..........my RO filled out paperwork requesting the same thing............I am waiting for an answer.

The one thing after reading up on this shit before surgery is I did not want it.l

The LE specialist that I saw said it has nothing to do with node removal, or how many they take out.........she said if none are removed "of course" you won't get it because node removal is what "CAN" cause it to happen, but it does not happen to all women who have nodes removed............sounds confusing doesn't it, but it isn't............only 20-30% of women who have node removal will get LE...........She is a BC survivor of 11 years...........she had 25 nodes removed, and did not get LE.............so you can see what she is saying

You need node removal to get LE, but not everyone who has nodes removed Gets LE.

Makes sense...................I will let you know how I make out with Aetna, and what occurs.

Pil keep in mind if they do a SNB, and your dye works, and you have no node involvement this is really a non issue.........but they have to do the SNB to find out if you have node involvement, and if you do, by chance,,,,,,,,,,removing the positive nodes is a life saver...................so you can't say "don't take them out".........that would be foolish...................LE is terrible, but recurrance is worse.

My mom developed lymphedema in Dec, less than 3 months after having one node removed.  She went through massage therapy and hasn't had problems since.

I had 13 nodes removed. Immediate truncal lymphedema which is very painful - a year and ahalf after surgery. I now wear a sleeve most of the time as well.

I had 14 nodes removed and have not really had any lymphedema problems yet.  I have a very small amount of swelling in my upper arm which I try to correct with manual lymph drainage massage.  I also have a very small amount of truncal LE on that side near my shoulder on my back; only on occasion is it uncomfortable.  My LR therapist told me that it is her opinion that the skill of the surgeon during the node removal makes a big differences in the occurrence of LE.  Good luck, I totally understand your fear and will be thinking of you.

Hi - I had 27 nodes removed in March 2009 and, knock on wood, have no signs of lymphodema. I do a lot of yoga and pilates, which I have read helps prevent it. Hope that helps! Tammy

After 2 sentinel nodes showed tiny cancer clusters, I had 11 more removed in a second surgery (all fine). Two years later...no LE.  However I still wonder why I agreed to the additional node disection surgery.  As far as I know finding cancer in additional nodes would not have changed my treatment.   With 2 positive sentinel nodes I got the whole enchilada...chemo, rads, hormone therapy.  Oh well...

Patty

pil, hello and welcome!

I sure do understand your worry, but have to agree with Ducky that LE may be tough, but a recurrence is a whole lot worse. 

I had a single lymph node removed on my left (cancer) side and none purposely removed on my right (prophylactic) side. I had no other risk factors for lymphdema: I'm small and not overweight, I had no cording or infection, and no previous surgeries or trauma to my chest. But I now have bilateral lymphedema in arms, hands, and trunk. It's a bear, but it's doable. It is also possible (though rare) to develop lymphedema after any breast or chest surgery (breast reduction or augmentation, heart surgery) with no cancer and no nodes removed. Just the cutting of lymph vessels and the resulting scar tissue can cause it. Football players sometimes develop it because of all the blunt trauma to their chests. And in Haiti after the earthquake, with so many crush injuries to arms and legs, lymphedema is a serious issue. 

In other words, this is a lot more complicated problem than it appears on the surface.

What we DO know is that there are some things you can do to reduce your risk. Here are two websites that describe them:

http://www.lymphnet.org (see their Position Papers on risk reduction, air travel, and exercise)

http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

Best bet, Pil, is to get a prompt referral from any doctor on your team to a well-trained lymphedema therapist for evaluation, baseline arm measurements, and personalized risk reduction tips. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

As ComingToTerms suggests, exercise can in some cases be helpful, but it's a two-edged sword -- it can also trigger lymphedema. The only safe way to do that after bc treatment is to start off VERY slowly and proceed with caution, being attentive for any aching, soreness, tingling or tightness in your arm -- or even just feeling "funny" -- and back off if any of that happens. You can find more specific exercise information, along with an explanation of the research studies that have been done on it, on the Lymphenet.org site above.

The one thing that's guaranteed is that, should you ever develop signs of lymphedema, you have a whole Sista'hood here to cheer you through it. Please let us know how we can help!

Gentle hugs,
Binney

I had 18 modes taken out 23 years ago and no lymphedema. good luck.

Hi pil,

I had 30 lymph glands removed and within 2 days of surgery, had LE in breast and arm, however I was determined  to tackle the problem  and went to the gym regardless, and continue to have regular physio and use it as normal. I have not tried to baby my arm in any way, and I think that helps keep it under control  It is now over 3.5 years since it started, and at this stage I continue to manage it without major problems.

ched

I had 2 sentinel and one axillary node out and developed LE three weeks later, while having a ton of cording, after some bug bites. And it never went away.

Jane/Onebadboob also had 3 nodes out.

At the NLN conference there was a photo of a woman with a huge arm, who had a single node out and no radiation--LE is more complex than just number of nodes--there are inherent factors (some people don't have a robust lymphatic system), genetic predisposition, complications--like axillary web, infection, seromas.

There was one study of women with ALND and they followed them for 20 years, and most developed LE in the first 5 years, but for every year afterwards, a few more developed it, so at 20 years, 50% of the women had LE.

Kira 

I had a sentinel node out on my DCIS side (why? Dr. said just to be sure) and no nodes removed on prophy side. I developed truncal LE 10 mths later on node side, which was 3 mths after my exchange surgery to permanent implants. About two years later I developed light truncal LE on my prophy side. I had a rough time with my expansion and implants, and I'm starting to think the recon might have been the cause of most of my problems. The more scar tissue that developed around my implants, the worse it got.