Are you kidding me???

If you are having a SNB and not axillary lymph node dissection, your risk for lymphedema is relatively low - I believe around the 5% mark, or a bit higher.  It is the unfortunate truth that it does happen, but try not to worry about things that are relatively unlikely to happen. For the majority  of us with lymphedema, it does not look like elephantitis. 

Cmo65: every treatment has its risks but 5% risk of lymphedema is not a high risk compared to what the risk might be if cancer is left behind.

I had both SNB and auxiliary nodes taken out. I have no lymphedema. My six month follow up was last week and they did arm measurement to compare it to pre-surgery numbers: no change.

Yes, BC is the "gift" that just keeps giving (for some of us anyway!). Do be aware that radiation may also slightly increase your risk of LE but priority is to get rid of the tumor and any other nasty cells that may be lurking so we do what we have to do.

Advocate for yourself by requesting a pre-op evaluation in order to record baseline arm measurements: it's amazing how many clinics neglect this simple step and have patients taken by surprise when swelling occurs. When it does, we recognize & seek to manage it. However, as SpecialK points out, it's probably likely that you'll never have to deal with this.

Also, cmo, don't worry about anyone judging your reaction to learning about potential LE in the BC mix. Every person here can relate to the frustration, fear and anger that comes with the thought of LE as a side-effect of BC treatment. If emotions run high as you're facing BC... I think you're in plenty of company.

@Cmo, don't worry about your word usage. As soon as I was diagnosed I went to Google and images and then looked up the Hemlock society ( they have changed their name to Compassion something) I felt utterly, completely defeated. It took going to the LE therapist who had LE and seeing a perfectly normal, functional person with a little swelling in her fingers (and I had to have on my reading glasses to see it) to get me over what I saw on the internet. Many or even most of those photo's are of people who were not treated for a variety of reasons such as improper diagnosis, severe depression. morbid obesity or no access to treatment.

Those photo's do not and will not define my story, and they wont define yours. You're ahead of the game you already know where to come for help if you need it.

My introduction to lymphedema prevention came from a lymphedema therapist preop, and CMO65's post was pretty much in line with my response.  I was referred to a lymphedema therapist before and after BMX, and have been as diligent as I know how to be.  So now 2 issues, on my final visit for repeat measurements, the therapist concluded that I was more or less borderline lymphedema in my right upper arm, but has advised wearing a compression sleeve for the next month.  She also advised doing some measurements at home.  Bottom line, I have no pain, no clearly visible changes, and I'm not convinced that it is early lymphedema, but I will defer to her expertise and get the garment.

But what I'm really having trouble getting my head around is lifelong precautions of limited lifting and arm use (don't pick up small children, don't paint, maybe 15 pounds lifting limit?) and the medical issues of future IVs in my feet or neck, blood draws, blood pressure monitoring.  The BS gave me a 3% risk of lymphedema with SNB, but even against that low risk, do I really need IVs in my foot or neck?  Plus, the BS's office feels it is okay to check my BP in one of my arms, even though it was done on the thigh in the hospital. 

As this board is women who actually have struggled with this, I'm sure you all have a lot of wisdom on the matter.  I don't take it lightly by any means, but what do I do with all of this?  I'm getting the idea that one can adhere to all known precautions, and yet develop LE, or conversely, ignore it all, and not develop LE.  Makes my head spin!!

Hi Cmo65:

You can take steps to try and reduce the risk of lympedema. See for example this website's tips:

http://www.stepup-speakout.org/riskreduction_for_l...

I find it helps to read more than one item on the same topic, so here's another one:

http://lymphnet.org/pdfDocs/nlnriskreduction_summa...

Overexercising increases the load on the lymphatics, so you need to very gradually increase activity involving the at risk arm. Listen to you body, and dial it down if needed.

BarredOwl

For anyone thinking about weight lifting as a strategy to help with LE:

Here's an article about weight lifting and exercise, also from step-up, speak out: http://www.stepup-speakout.org/Handout%20doc%20for...

And I think you'll get even more out of this one, geared for trainers and fitness instructors: http://www.stepup-speakout.org/Trainer%20doc%20for...

Iowa, if you're currently wearing your sleeve 8 hours a day, try removing it for a time (an hour or two, say) when you're not active and have the energy to monitor it. Do that for several days, and if it's working increase the time an hour at a time.

A better way to address this issue of when you need to wear a sleeve is to keep in mind that certain conditions cause more swelling: increased activity, heat or cold, air pressure changes (altitude changes or weather), or any trauma however slight (insect bites, mild sunburn, paper cuts, etc.) Use your sleeve when you encounter these activities, even if you're not needing it regularly throughout the day.

Let us know what you discover!

Hugs,
Binney

hi. so sorry for your anxiety. it is real. I was an avid exerciser, weight-lifting, running, anything that was physical. they said I probably wouldn't get it, I was thin and active before, even after. but I have it. good luck. i am heartbroken over it. my arm even looks different without the swelling. and lets not go to the cording issue!!! good luck!

This makes me mad! I had measurements taken before my BMX and a test that measures lymph fluid throughout your body to check risk factor. However no one ever told me not to lift my arms for two weeks after surgery! I was lifting them all the time for ROM purposes!!!

No one ever told me that, either. In fact my surgeon told me to start doing the "walk fingers up wall as far as you can" exercise right away, less than 24 hrs after surgery! It was irrelevant in my case since I couldn't get my arm above shoulder level for a lot more than 2 weeks..... But still.....

Gosh do I hear you my sweetie... This is like a three ring circus!!! I can't begin to tell you how much I didn't know or expect.. I'm in total awe!! The picture just keeps more horrific with each passing day. Left the physical therapist today in tears, just bolted!! Got up for a 7:15 am appt. Totally believed she was going to massage my breast and hoped to feel much better. Oh heck no!, Yap crawl up the wall exercises, some crazy sticky patch yada yadda!! I could have picked this info up at a more Godly hour for sure!!! I am totally beside myself. Unprepared as if by design!, WTH?? I cry because I can. As if we are lemmings filling some path . I personally am over it. Tumor removed , margins clear, couple of icky nodes, but oh well. Rolling the dice now with alternative treatments. No chemo or radiation. I'm at peace. A couple of key words you might want to research. Baking soda, Molasses, Lemon, Dandelion root, X or Black salve, Apple cider vinegar, Grape seed oil, and of course Rick's cure which involves cannibus and is illegal in most states. God Bless and may your journey have a beautiful outcome no matter what you choose. I can only speak for myself, however I encourage people to research:)

Diane555, I am almost 6 weeks out from surgery to repair a rotator cuff tear, a slap tear, and an acromial decompression. In my case the surgery was on my non-LE side. I had bilateral mastectomy and diep reconstruction, but the only nodes I lost on the non-LE side were those in the removed breast tissue. I can report to you that I am experiencing no visible swelling in my surgery-side arm, but I do have sensations (heaviness and a slight burning feeling) that are consistent with what I do often get on my LE arm--but of course, I also have significant heaviness and aches from the surgery, with no active range of motion above the elbow as yet, so there's no way to tell if what I'm feeling is from post-surgical lymph overload, from just the normal challenges of recovering from shoulder joint repair, or from early LE.

That said, I am now experiencing sporadic and very noticeable swelling of my breast on the surgery side, i.e. pitting edema that is giving me the willies, wondering if it's a temporary condition or LE, which in early stages can indeed produce sporadic swelling. This started at about week # 4.

The shoulder is rich in lymphatic channels, and it only makes sense that disruption from post-surgical swelling and scar tissue could block lymph flow, hopefully only temporarily. I had an interesting experience yesterday, when I put on an old shaper cami that has narrow straps that are a bit snug (in hindsight, too snug). After four or five hours I realized that the breast swelling had kicked in again, more severely than before. I removed the cami and in a couple of hours the swelling had diminished quite a bit. Normally I am wearing a compression tee shirt (made for me with a zipper front, because I am not permitted nor could I put my arms over my head to don a normal shirt), but I had it in he wash and so had ferreted through my drawer to find a shaper I could step into. Finding that my camis with wide straps could not safely go over my shoulder after stepping in, I opted for the skinny strap--bad choice. What I learned from that experience is how sensitive the shoulder lymphatics are to the strap's compression, which is of course exactly what we're told to avoid when we have LE or risk it.

I know I'm frightening you here, and that's not my intent at all, but rather to share my experience so you can in turn share with your surgeon. My lessons learned for managing the potential LE development on my non-current-LE side are these:

1) Wear compression 24/7, as soon as wound dressings are removed and you are permitted to do so. A compression shirt will compress the shoulder, although you have to find one you can get into. After my experience yesterday with the cami, I'll be ordering two more of the zip-up shirts so I can compress the shoulder as well as the troublesome breast at all times.

2) LE is an inflammatory condition, so use every known trick in the book to reduce post-surgical inflammation early on, including abundant use of the ice/compression machine in the two weeks after surgery, and then continue to ice often after that. I did not use ice therapy as much as I should have after the initial two weeks, as I did some long-planned travel with DH and then re-started work travel. I managed all of the travel just fine, but if I'm honest with myself, the ice therapy suffered during that time. Back home now for a while, I'm icing regularly again. NSAID pain relievers reduce inflammation, so talk with your surgeon about choice of pain relievers. My two tears were repaired using anchors into the bone, and I was advised to avoid ibuprophen and naproxen sodium, as they have been shown to delay bone healing, so I'm on acetaminophen only. At this point I need pain control help generally only at night, and I'm weighing whether to switch to ibuprophen despite the potential healing delay. It may be a tad too late for me to benefit fully from NSAIDs' anti-inflammatory properties, but you might discuss the pros and cons with your surgeon and with a pharmacist. I didn't believe the no-NSAIDs initially, but with some googling I found references to the relevant study, and while it struck me as being a bit tentative in its conclusions, I found the same avoidance advice in patient post-surgical guides provided by some well known health systems. One thought is to find out if your surgeon plans to use an anchor for the repair--if not--say, he debrides the tear instead of repairing it, which is a common outcome--there would be no need to avoid the NSAIDS.

3) Keep in mind that pain draws lymph, and that means that if you do have the surgery, take pain meds as needed.

4) Keep in mind that pain draws lymph, and that means that if you do NOT have the surgery, you may still be inviting LE to respond to the pain. (You are so right about darned if you do, darned if you don't.)

Again, I don't mean to frighten you or complicate your decision, but to give you some additional discussion points to cover with your surgeon and ideally a pharmacist on the pain meds question.

And I know we have a few pharmacists in this forum who sometimes offer perspectives, so perhaps one of them will see this and chime in on the NSAIDS / healing delay question.

Most of all...hugs to you. This is a hard decision, and shoulder surgery recovery is not simple and easy. If you'd like to chat, PM me and we can work that out.

Carol

glennie, the readings on that question are giving me whiplash; controversial no kidding. I'm trying to puzzle through the implications of studies suggesting delayed bone healing, and some point to tendon healing delays too, on the observation that NSAIDS reduce the very inflammatioin that's needed for healing. But those researchers never thought of broken bones on a person with LE! We don't want inflammation, so wow...conflicting priorities. I don't expect to find a good answer to the problem of allowing some inflammation to promote healing, while disallowing it to reduce or prevent LE after an injury, or in my case surgery. It's why I suggested to diane555 to discuss pros and cons with her surgeon (who unfortunately isn't likely to 'get' the LE dilemma). No clear pathway here, but to NSAID or not after surgery is a very good question for someone with or at risk of LE.