Ok, so you canget LE without node removal.

iammommy

I had a pbmx for lcis. No nodes tested, biopsed or removed. Pathology report showed no cancer and i need no treatment. What precautions do i take? No bp on either arm? Etc. TIA! Nan

vmudrow

I had PBMX for ALH and I don't think you can get LE - I think you need to have node removal - so I think we are lucky.  I can have bp on either arm.

kira66715

Actually you can get lymphedema without axillary node removal: you had inframammary nodes removed with your mastectomy, and possibly some nodes along the border, depending on the surgical technique.

There are a few women on this board who got lymphedema on their prophylactic side, with no nodes removed.

So, while the risk is low, it's not zero, and if you want to prevent it, you should learn about prevention behaviors.

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

Kira 

Here is an image of the lymphatic system--if you look at it, you'll see how many nodes are in the breast

http://www.thymate.com/anatomy/lymsypic.html

vmudrow

Kira - thanks so much for the info.  I was never informed that this was a possibility.  I didn't even realize there were nodes in the breast.  Doubly glad now that I didn't get it!!

barbe1958

Valerie, it can take as long as 20 years for LE to show up. You aren't out of the woods yet. Any surgery that interupts the lymphatic system can cause distress and potential LE.

lago

Yup My BS told me that even just getting my breast removed puts me at risk for LE… granted the risk is lower but still there.

Binney4

Valerie, I sure don't like to be the bad-news bear, but you're not out of the woods. Our risk for lymphedema remains for life. So it's worth learning what the risk-reduction strategies are and deciding for yourself what you want to do about it. With no node dissection your risk is low, but it's not zero. And if it happens to you it's 100%.

Like you, my doctors told me after my prophylactic mastectomy that I didn't have to worry about it, but I did develop lymphedema. I wish instead he'd told me that I was at risk and offered me guidelines for how to deal with it. Then I could have chosen my own life-style compromises and avoided the nasty surprise that lymphedema is when you don't realize it could happen to you.

It might be a good idea to request a referral for evaluation by a well-trained lymphedma therapist. S/he can take baseline measurements for future reference and give you personalized risk reduction tips. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Stay well!
Binney

ma111

I had LE starting before my bx.

Ask your onc or BS if you can have iv's in that arm. They may need to go to your leg for bp.

lago

It's very difficult to get folks to do BP on your leg. My onc still insists on taking from my 4 node arm. When the take if from my leg the alarms all go off on the machine it's so high. The other day I had it done on my leg and it read  172/99! Trust me I don't have high BP but very few people know how to take it properly on the leg.

When I had a CT scan done after chemo they wanted to stick my arm (I don't have a powerport so they couldn't use that). I really fought hard. I asked the woman if I actually had LE in both arms what she would do. She spoke with the radiologist and they agreed to do the IV in my foot. I think they could tell I was ready to walk out.

But you can be assured that no one is sticking my arms. I have LE in one arm I don't need it in two. The sleeve isn't that comfortable that I am wishing to have matching arms.

BoobsinaBox

Iago,

My experience with leg BP is that if I tell them I have to lie down flat for 5 minutes before they take it, and if they do the ankle, then the readings are the same as they used to be in my arms.  Only use manual pump, however, not automatic, because they go too high and cause pain and movement, which raises the BP.  I've had to argue for it, but if they realize it is ankle BP done right, or NO BP, they come around.  We shouldn't have to fight for so many things, but we do.  Good luck to you and all who have this issue.

Dawn 

Suzybelle

Oh, this thread has helped me so much - some of the nurses get really snip-snappy with me when I ask them to take it in my leg.  (except at my onco's - they are wonderful there, love them.)

Iago and Dawn, thank you!!!!!  I now know how to address this.  So far I just let the nurses win, because when it comes to medical crap I am a total moron.   But now I have my argument ready.  Snip-snappy nurses, watch out.

lago

BTW when they do take it on my arm I make the do it with the manual. No machine is ever going to be on my arm.