What are my chances of getting LE?

I would second Kira's advice to be sure you have a surgeon you trust.  I had some concerns about mine, but everyone said he was so great.  He wasn't, and if I could change anything at all about my diagnosis and treatment, it would be who I allowed to do the surgery.  You do have time for a second opinion.  My husband tried to get me to do one, and I wanted to act fast.  It was a mistake.  I hope you find a good surgeon who will do what feels right to you and to her or him.

Dawn 

I had my BMX 10 nodes (level 1) on one side and 4 nodes (sentinel biopsy) on the other. I have a mild case of lymphedema on the 10 node side but teh 4 node side is fine. I've even had blood pressure taken on the 4 node side (before chemo) and still no problems. I do take precautions to prevent it's onset though.

Also just because you get lymphedema doesn't mean it will be a full blown case. My LE arm isn't that bad. I will be seeing a LE therapist next week to get the fluid down but most people wouldn't even know I have it. It's something that will need to be managed but not terrible to live with. Certainly better than acne. I hated dealing with that in my 20s!

I am thrilled that Iago is having as little problems with LE as she is, and that it's less bothersome for her than acne.  Unhappily, that is not the norm with LE.  Like Binney, the LE diagnosis was more upsetting than the original cancer diagnosis.  I went into major depression because of it, honestly.  My days of gardening, guitar playing, and lots of other things (like taking out the trash - don't miss that) are over because of the limited ability of this arm.  I'm on pain meds. for the nerve pain which is a constant companion.  It has changed my life.  There are so many things I cannot do now that I have LE, and am in compression garments every day, doing MLD/machine every night, wrapping the arm or donning garments nightly.  Short version of all that - it sucks. I am learning how to live with it, but it has been a major challenge for me.

KJ, I am also confused as to why your doc. wants to take so many nodes out.  I would get a straight answer on that, think about it, and if it didn't make sense to me, I would shop for another doctor. 

 I agree that you should wait until they are sure you have an invasive component- and then like Kira said - even if you do- a SNB is standard of care, not a full ALND. I had IDC, had the SNB which turned out to be a false negative during surgery- it looked negative so I had no further dissection, but two days later it came back positive.

because I had TRAM recon with the blood supply hooked up to a vein in my armpit- had I had the full ALND my PS would had to have been brought in to make sure they didn't disrupt the blood flow- and I was told my chances of getting LE were good. I opted for no further dissection, the one spot that was found was small, I was doing chemo and I also added radiation bc of the node.

I am really active, I really like hiking and all the things they tell you to avoid (bug bites, sunburn, scrapes, etc) are unavoidable when hiking. I refuse to live my life in fear of something that "might" happen.  But I do have mild LE anyway.It developed a few months after radiation. I think the radiation and the scar tissue from the TRAM recon is more to blame for the LE than the SNB. I don't remember them telling me the recon alone could cause LE.  But my LE isn't really visible- I have it in the upper arm some, but mostly chest and back. I do MLD to keep it under control and it doesn't keep me from doing anything except I feel like my LE side is weaker than my non LE side. I stopped wearing a bra except for special occasions and wear camisoles instead. When I do wear a bra I try to take it off asap.

KMMD--you are not hypocritcal, we all make the decision when and where to wear compression--and I've heard from health care workers in Australia and the UK where they are not allowed to wear it at work--"bare from the elbows down" rule is enforced.

My older daughter got married three weeks after my lumpectiomy/SNB--I had tons of axillary web, but no swelling yet (that came three days later when I took my sister to the beach and got the bug bites) and my daughter framed a photo of our family and I look at it a lot and think "That's me without LE." Those pictures from weddings are momentos, and I wouldn't wear a sleeve for the photos.

For a long time, I wouldn't wear a glove at work. But, with the fracture, I do all the time now, and I ran into someone at Trader Joe's after work, and she kept staring at my hand, and I just wasn't up for an explanation.

Funny how people wear their carpal tunnel splints with pride, and the LE sleeves/gloves feel like a stigma.

When I was in the cast, my sister wanted me to come to California to visit, and just didn't get that I couldn't fly, as I couldn't put compression on....

You are not a hypocrite: you are a reasonable person who figures out in which situations compression is needed.

Lago: I understand that bad acne can be hard to bear, but for me--and I had acne for a long time, and passed it on to my younger daughter--the limitations and impact of LE are much, much more profound than acne. Just my opinion. Plenty of women have mild LE, and plenty of women deny their LE and LE impacts us all differently, but even a little bit of swelling can impact me a lot.

KJ: it doesn't seem like you've checked back, but if you read through this, everyone wants you to keep your options open, and only take lymph nodes if needed, and hope you'll be having that next baby.

Kira

I have a question, I hope it is ok to ask here.

I had bil mx and three sentinel nodes out on the cancer side the left.  I travel for work and asked my Oncologist if I needed to wear a lymphedema sleeve when I fly,  and she said no (I have not had any at this point) that was only if I had all the nodes removed.  For those of you on this thread is this your understanding?

thanks in advance

KJ,  This is my humble opinion.  If you  have DCIS or even some invasive bc, removing all nodes at this time sounds a little extreme.  I could understand removing the sentinel node. Best advice is to sure you trust the surgeon, get a second opinion or two if necessary.  Then do what you think is the best decision for you.

Determined, I was told after my BMX (with axillary node disection) by my breast specialist & LE therapist that I should always wear compression sleeves when flying or in high altitude. I now have mild LE in bc side. Not sure your oncologist would be the best person for giving this advice.  As to getting LE, odds are it can go either way.

Determined, there is a real difference of opinion on preventative sleeve wearing.

I have been told by most not to do it, if you have no LE. The compression can actually cause some swelling. Plus if you don't have LE and have never worn a sleeve before, you really don't quite know how well that sleeve works for you. I was given a "just in case" sleeve and for my LE I think it's an akward fit.

Some folks will disagree on this and do wear the sleeves for flying and exercise. 

If you have no LE I would just focus on drinking water, making sure you move every hour in the air, avoid salt, and avoid clothes and bracelets or rings that constrict.

Perhaps some of the others will have a different idea,

At the end of the day, I met a woman who had 36 nodes out, takes no precautions and has no LE.

Yet some of us with just a few, who take every precaution, end up here.

Go figure.

lago, didn't think you were down playing it, seriously.  It is good to get opinions from people with a wide range of experiences

Determined:

There is a National Lymphedema Network position paper on flying and the need for compression, and if you do have lymphedema, you need it, and if you're just "at risk" you need to evaluate your situation individually.

Cookie is right--poor compression is worse than no compression.

Some LE therapists recommend a "below therapeutic" compression for flying at risk--only Jobst makes this in a sleeve--15-20 mm, along with hand compression.

Here's the reference to the NLN guidelines:

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

Kira

kj....... I'm sure your head is spinning, your heart has fallen and it's an effort to sort up from down. My heart goes out to you as you work diligently to sort thru all that you must sort.

I just wanted to chime in with encouragement.

The first portion of the journey is such a challenge.

We all hate that you must be in this journey at all, let alone at your age. You have come to a great site, full of knowledge, experience and expertise.

It's amazing to me that you have already learned about Lymphedema at your early start of the journey..... that's encouraging that you even know to ask the informed questions you've initiated.

Of course learning more about LE will assure you that you do everything in your power to avoid it...... we will all hope and pray that you never become a regular part of our swell-sorority.

The very best of all the best of the best for you.

I completely concur that choosing the surgeon who resonates with your gut, your instincts, your research yada yada is who you want to entrust your world to.

xx00xx00xx00xx

(((((((((((kj))))))))))