should i be concerned about LE

Hmmm... there's been a lot of discussion since I last signed on here.  Many thanks to all who jumped in to support me.  I am very grateful. 

mathteacher, like you, I am only trying to give people accurate information. The original poster, who had DCIS and had 2 nodes removed, asked if she should be concerned about LE.  In reading the earliest replies I was a bit worried that the risk of LE, and the need for precautions, might have been downplayed. That's why I decided to answer.  I wanted to highlight the risk, without being overly dramatic or frightening.  I think that what I wrote was accurate and appropriate as an answer to helenap, given her specific question/concerns and the fact that she had just 2 nodes removed.  I was certainly not trying to underplay the seriousness of LE or the risk of LE.  If I'd been posting my answer in a different forum - the Stage III forum, for example, where most of the readers would have undergone full axillary dissections - I would certainly have worded the answer differently and stressed different points.  But this is the DCIS forum and I think my answer was appropriate for this forum.  That is after all why this board has been divided into so many forums, so that the answers given are appropriate to the stage, diagnosis or treatment in question.

I agree with all of those who've suggested that any more detailed discussion about LE should be moved to the LE forum.  And I will leave it to the women there, and in particular to Binney, who truly is the resident expert on LE, to carry on with the discussion.

Funny thing about being on these boards is that you start to get a gut feeling about some frequent posters. This is at least the second -- maybe third thread -- where I found this "mathteacher" poster to either be trolling for attention or zealously combative.

So whether or not this individual is trying to help educate individuals or not, his/her manner is so off-putting that I suggest that others do as I now do, and simply not read beyond his/her name.

On the other hand, I am a HUGE supporter of "Beesie" posts, and continue to find comfort and strength and education when I read her posts. So please do keep posting, Beesie.

 As far as the original poster's topic, other than blood drawn and blood pressures taken on the opposite side of snb, I live the same as before the nodes were removed, thankfully.

Hi ladies,

I'm new to your thread but been a member on other threads for several months now.  I have 8 rad tx so far, I didn't go yesterday and was at BS's office instead.  My L arm is now frequently numb like bad blood circulation. Can't even hold the cell phone for more than a couple of minutes.  Arm is tired without doing anything.  Inside elbow is slightly puffy.

During my last Thurs meeting with rad onc, told him that my L axilla is slightly swollen and inside elbow is slightly swollen.  He palpated the area and said it was slightly swollen and we will wait and see.

During Friday's treatment, I could feel 5 out of 12 of the zaps coming from L angle, and could feel 2-3 zaps out of 12 from R angle. 

My other BCO friends told me about "brachial nerve" damage.  I looked at the older post re: "Arm Pain", but the thread is no longer being updated.

I wonder if anyone here has had my problem.  I am now worried about going to my appointment later today. 

I'd appreciate if you can share anything that you know.  Thank you.

lago, there is a good deal of misinformation making the rounds lately, and we're seeing lots of doctors telling patients it's okay to use the affected arm for blood pressure or whatever else they want. There are no studies showing anything about it one way or the other, but there is plenty of clinical evidence that blood pressure on the affected arm can trigger lymphedema. The swelling in my right arm started when I flew to Alaska without any hand protection, and in my left arm when I allowed blood pressure there, so I'm personally not a fan of this attitude. It's not their arm, it's yours, and LE is for the rest of your life.

As for accurate blood pressure, there IS a recent study that shows that MOST doctors/nurses do not take it accurately and so do not get accurate results, but none of that has to do with which arm you use (LindaLou posted the abstract recently on the Lymphedema board if you'd like to look it up).

I do wish it were true that being thin is protective, but it sure isn't -- I'm tiny too, and so are many of the women who post on the LE board. 

Not knowing squat about LE does not make your doctor bad at what he does as far as cancer treatment is concerned -- it's just that nobody claims LE as part of their specialty. Two years ago Dr. Stanley Rockson of Stanford University did a survey of US med schools and found that the average amount of time spent learning about the lymph system in a doctor's medical education was 15 minutes. Which basically means that you, lago, have already spent more time learning about lymphedema than your doctor likely has. 

All LE myths aside, in the end, it's your arm, and you have the final say about how it's used.

Diamondgirl, the medical professionals who evaluate and treat lymphedema are specially-trained lymphedema therapists. If your doctor has ruled out other reasons for new swelling, ask for a referral to a therapist for evaluation. "Wait and see" with lymphedema means longer therapy, more fibrotic build-up, and a higher risk for cellulitis (infection). Here's information about how to find a well-qualified one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Lots of women with similar experiences on the Lymphedema After Surgery board, so do consider popping over there for more information.

Be well,
Binney

Lago ~ thanks so much for the info

I will go and check it out.