should i be concerned about LE

helenap...you might try posting on the LE thread...their are some very knowledgeable women that can answer your questions.   Everyone who has lymph nodes removed is at risk.  Take care.

If you've had lymph nodes removed, you have a risk of lymphedema.  That's the simple fact. This doesn't mean that you will get lymphedema - most women don't - but the risk exists and it's there for life.  The good news for those of us who've had fewer nodes removed is that our risk is pretty low.  I've read that it's in the range of 3% - 7% but I don't think anyone knows for sure.

Here's the thing about it.  There will be women who have lots of nodes removed and who take no precautions and yet they never get lymphedema.   And there will also be women who have only 1 or 2 nodes removed and take lots of precautions but still get lymphedema.  Also, some women will develop lymphedema almost immediately after surgery while other women may go many years before something happens that triggers the development of lymphedema.  The risk is always there.  And once you have lymphedema, you'll always have it.  But still, most women never develop it. The simple fact is that no one knows whether any one of us will develop lymphedema or not, and if we do, when it might happen.  The one thing we do know however is that what happened to someone else is no indication of what might happen to you. 

We all face a risk and we all have to decide to what extend we want to take precautions.  In my case, I don't restrict my arm movements at all (and I don't know that this is necessary - those on the LE discussion forum can tell you this) but I am more careful when I get cuts (I put on Neosporin and a bandaid immediately) and I am more careful when I garden or do household chores that might lead to cuts or infections. You have to decide for yourself whether or not you want to take precautions, and if so, which precautions you want to take. 

Beesie, actually 49% of us get lymphedema who had full dissection.

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  Researchers at Memorial Sloan Kettering found the lymphedema rate was 49% bythe time patients, who had had full axillary dissection, reached the 20 year mark.
  Cancer. 2001 Sep 15;92(6):1368-77.Lymphedema in a cohort of breast carcinoma survivors 20 years after diagnosis.Petrek JA, Senie RT, Peters M, Rosen PP.Department of Surgery, Memorial Sloan-Kettering Cancer Center, New York

 Beesie, dear,

Please give some actual scientific sources for your mathmatical impressions. You probably shouldn't be passing off numbers without a place we can verify it.

"A SNB spares approx.70% of early-stage breast cancer patients from having a full axillary dissection"  http://annonc.oxfordjournals.org/content/20/6/973.full

Stage distribution of breast cancer diagnoses... 60% is localized.  http://seer.cancer.gov/statfacts/html/breast.html#survival

"According to the National Lymphedema Network, approximately 15 to 20 percent of all breast cancer patients are affected by ULE."  http://esciencenews.com/articles/2008/05/18/m.d.anderson.nurse.addresses.lymphedema.breast.%20cancer.patients.and.survivors

"Removing fewer nodes, as in SNB, lowers the risk of lymphedema but does not eliminate it.  In a study of 936 women at the 5-year mark after breast surgery, researchers found that 16% of the patients had developed lymphedema following ALND, compared to 5% after SNB."    http://books.google.ca/books?id=TNizX15JGAAC&pg=PA357&lpg=PA357&dq=risk+of+Lymphedema+after+SNB+breast&source=bl&ots=BLwlf0tqZQ&sig=N4i_TO3gbze_3THorSbSEtV_p-k&hl=en&ei=Zr_ETOD_FsX_ngfL9rSKCg&sa=X&oi=book_result&ct=result&resnum=10&ved=0CEQQ6AEwCQ#v=onepage&q=risk%20of%20Lymphedema%20after%20SNB%20breast&f=false

I could provide many more sources that show similar data - I generally try not to present data unless I have more than one source - but I don't think that's necessary.  The women in this forum who are familiar with my posts know that I have support for data I present. 

Don't worry helenap,

I see you have DCIS so I'm guessing you had a sentinel node biopsy. I did too. I was concerned about LE because of what I've read on the threads and the difference of opinion that exists here. I ask my onco and my primary care Drs and they both said the same thing. The risk of LE is much smaller than it use to be because of the strides they've made with the availability of the SNB. The fewer nodes removed, the less chance of LE. The chance is still there, just much less of a chance with SNB. Try not to worry.

((((HUGS))))

Susie

there won't be long term data on snb procedure as that procedure is reatively new.  no, i don't have data to back up that statement but common sense, if there are lots of doctors still not trained to perform this procedure then it can't be that old.  i might type like a kid right now but i am not stupid.  i only have one arm to type with for the time being.

beesie knows what she is talking about - i have been around long enough on bco and have read many of her posts.  she is very much educated about bc.  i would never ask her to back up her statements - i find that offensive.

and yes, i have put thought into this response so i am ready to get yelled at - but am willing to take an arse chewing for beesie any time, any day.

Still haven't seen those studies you claim exist.

mathteacher, I'm wondering about your insistence on seeing the studies. Have you looked up the ones I cited by Stanton yet? That would be a good place for you to start. One is 2008, the other 2009. Good reading, and it will give you an idea of the tenuous nature of research data as it applies to lymphedema.

I guess I'm wondering if there's any way we can help you, because you do seem upset about the purported statistics. Would it help if I told you that, even though lymphedema is for life, there IS treatment for it, and ways to adjust to the chonic nature of it that makes life fully worth living -- anyhow?

Would it help if you knew that lymphedema is one of the most feared side effects of bc treatment, and that women who are treated for bc are largely unwilling to discuss it, learn about it, or be proactive in trying to avoid it?

Perhaps it would help if you knew that, should you develop lymphedema you may have entirely legitimate "feeling of abandonment by the medical community" [see studies regarding the psychosocial aspects of lymphedema by Dr. Elise Radina], but that your Sisters who are dealing with lymphedema have already prepared for you a welcoming embrace that will allow you access to both critical information for your continued good health and quality of life, and warm understanding.

Whatever it is you're dealing with, we sure are here to help you with it, but leaning on Beesie is going to be counter-productive. If you do a search at Scholar Google you'll likely find the studies that pertain to your concerns, but as several of us have already said, they're next to worthless in terms of solid statistics, for reasons already stated. For the most recent updates you could PM "Kira" or "OneBadBoob" for their summaries of the research presented last month at the International Conference for lymphedema professionals, which was hosted in Orlando by the National Lymphedema Network, which they both attended.

Please know we care about your struggles with this, and we're ready to help in whatever concrete way we can.

Gentle hugs,
Binney

Mathteacher,

I think you're one of those posters that have multiple member names and jump on issues.  You pop up on issues.  It's very appropriate that you use that little rodent as an identifier. 

There are all degrees of LE as well. Some women really suffer as we can see here. Some only have minor LE and some don't get it at all. 2 nodes you have a much smaller risk.

My BS did give me a prescription for a sleeve/gauntlet to wear for flying but said it was up to me. I did not have to wear it. I am considered low risk even in the arm where I had 10 nodes removed (other arm sentinel had 4 nodes) because I am "so thin" according to my doctor. I asked for a sleeve/gauntlet for my 4 node too. I will be wearing then on a plane for prevention. Granted there is some debate if this really helps.

But even if my risk is 3% it really doesn't matter how low that percentage is if I end up being one of those in the 3%. I will be wearing my sleeves on planes, wearing gloves to wash dishes etc. and carry antibacterial ointment with me at all times just in case I cut my hand or get a bug bite. Nothing like a little prevention.

With apologies to the original poster who asked a very important question, in my opinion, this is not the appropriate forum for this thread. We are all at risk for lymphedema, whether we've had nodes removed or not. I am not going to site a study to state that anymore than I would to state the fact that the sky is blue. This is a forum for DCIS-specific issues, and this thread belongs in the Lymphedema forum. Beesie has provided me with more comfort than she will ever know with her thoroughly analyzed information. I seek out her posts when I need to use science to get myself out of that scary, dark cancer place in my brain. I have cited her posts to both my oncologist and BS, and they concur with everything she has posted. Regardless of mathteacher's motivations, this thread has gone off-topic (op's specific question about her personal risk), and is serving no useful purpose. As the daughter of a woman who suffered from terrible lymphedema, the picture above breaks my heart. I am quite aware of the risks, and take the necessary precautions. Mets and Lymphedema are the two things I fear most, so I stay away from those forums unless I have a need to enter and I am then emotionally prepared for the memories that are dredged up. If this had been posted where it belonged, in the Lymphedema Forum, rather than here in DCIS, I wouldn't be sitting here crying for the past half hour thinking about my mother, how she suffered, how much I miss her, and how scared I am for myself. I don't know what your objective is, mathteacher, but I wanted you to be aware of one of the hopefully unintentional consequences.

mom3, 

Yes, you are wrong. I'm only trying to help people get accurate information. People can shoot the messenger or name-call but it doesn't change the evidence.

You are all in my prayers. We don't need this stress. Let's try to get along.

Binney - Thank you for your compassionate reply. Rather, I think a sticky with accurate, up-to-date information regarding lymphedema posted at the top of every forum would be a great idea. This thread--not so much. The direction it took, and the mean-spirited tone is not productive. The information you, Kira and many others provide is of great value to all who visit bc.org.

My mother's arm looked a bit worse than that picture, and I can still see her swollen, shiny skin and feel how different that side felt if I couldn't get my head over to hug her on the other side. Even though I'm 47, I'm still 9 when I think of that. PTSD, much? 

My BS was diagnosed with breast cancer when she was 37. She had 10 nodes removed. I'm sorry for her, but that experience has been a blessing in disguise for her patients. She keeps a lymphedema therapist on staff and all patients are evaluated both before and after surgery. I am measured at each follow-up appointment. I know how fortunate I am. 

Again, thank you for all you do. There are so many smart women here who strive to help others. It's a shame when some come along with their own agendas. Usually I'm able to stay out of the fray, but that picture really threw me. Time to step back behind the lurker curtain. Best wishes to all, including mathteacher.