LE Information: mastectomy, no nodes out, no radiation

beacon

WHY?
Why risk it ?
I had LX only ....period. NO rads at all.No meds even!

My BS who was a Dana F  for years and now at MGH said she has never seen lymphedema in someone with my profile, but she saw mine today , albeit mild in   Breast ....and also a 2% incr in arm measurement  6 mos out.  She has been a DR app 25 yrs. 

I wouldn't chance draws in that arm....you only have 2 of them!

Wow, beacon....I had a BMX with SNB (3 nodes), no chemo, no rads. Even THEN the hospital really minimized the likelihood of LE.

It was only through reading posts here on BCO that I became aware of the possibility, and chose to take preventative measures after my surgery.

So far, so good. But the LE therapist that I finally got to meet (at the same hospital) told me she had a patient who didn't develop LE until TEN YEARS after her surgery...and that was when she mistakenly tried to pull down a broken garage door!

Wow, ladies. Very interesting posts! I'm almost 4 wks post op from my BMX. I am extremely hypersensitive to the subject of lymphedema. I had a very difficult to diagnose dvt after a long flight 10 yrs ago. It was a nightmare, had an enormous medical work up, lasting yrs, including exploratory surgery to figure out why my leg was big and swollen. One of the theories for awhile was primary lymphedema, (a genetic predisposition to LE).

A lymphoscintigram eventually ruled that out. The only test I didn't have was an angiogram which I now know is the most definitive test for lower extremity blood clots that are sometimes hard to locate with a Doppler study alone.

Long story short this unresolved clot left me with symptoms very similar to lymphedema. Residual swelling, and nerve pain. The swelling is effected by weather, altitude, and activity. I always wear compression stockings when flying, and even then my leg still fills up. Humidity for some reason increases swelling as well.



When I found out a node biopsy was required with my BMX I became very concerned. All too aware how debilitating LE could become. My BS agreed to ordere a baseline bio impedance test prior to surgery, and has suggested repeating it in a couple of months. Did any of you ladies have that test? I hadn't heard of it prior to last month. From my understanding it can identify lymphedema prior to what otherwise would only be clinical findings?



Thanks for starting this thread! I agree with you gals. Take as many precautions as you can. My BS mentioned the blood draws and BP concerns related to LE were unfounded. I didn't care, I still asked to have all my post op BP vitals done on my legs, and had the IV on my other arm. Nurses were very cool about it too, but even if they weren't tough cookies, its my body. Who wants the risk!

I had 1 node removed with my Lumpectomy...I had a BLM 6 weeks later. No Rads.  MY BS said I could not get LE.  I knew that was not true.  I did take precautions.  I rested for weeks on end without lifting anything...No Vacuming - nothing...When I went back to lifting weights (which I was doing before surgery)  I worked up very slowly.

No Blood pressure or IVs in my node arm (although my Idiot 1st PS OR insisted on a cuff on my left arm during my Implant Debacle- So I did have that 4 months after my BLM...But I already had the pain & swelling on my chest side...almost immediately after my BLM.

I have Stage 1 Trunk LE & stage 0 left arm LE.  no arm Swelling.  My chest & sides hurt constantly.  My arm hurts alot.

Some things make me wonder...Do some surgeons mess more with the nodes when they remove them...Like Jumble the nodes that are left?  Might that increase ones risk?

Also pre BC.  My fingertips swelled alot when I went on walks...(although I had a hole in my heart at the time that I didnt know of & was having other severe symptoms because of it- so maybe that caused my Edema...?) 

Or maybe It meant I could easily get LE...?

Oh & I told my Whole family that I could never ever scrub a toilet again or I would get LE! (dh is very good about doing that)  It was my Little Joke that everyone went along with...  I never scrubbed a toilet again until this summer now I have LE- See.  I shouldnt have done that.  (certainly it doesnt matter that I am right handed- LOL)

Ginger, that's it exactly--and it sure makes things complicated! Dr. A.W. Stanton, a researcher in the UK, has published studies in the last couple of years that indicate some people have a more robust lymph system to start with, while others (like you and me, apparently!) have lymph systems that are already working at full capacity and get overwhelmed when the system is compromised. Other factors play a role too, like overweight and previous trauma to the area, but those factors alone don't explain why some of us get a pass on this and others don't.

KellieD, hello! Bioimpedence spectroscopy is a technique that detects fluid in the tissues at any given time. It cannot diagnose lymphedema, but some places are using it to note any fluctuation in fluid retention that might signal the presence of excess lymph fluid. An increase over time might then suggest you should see a lymphedema therapist for a complete evaluation. Researchers who have compared it with other assessments for LE (perometry, tape measurements) have not found it to be effective by itself. It needs the clinical involvement of someone actually trained in LE. Even the company that makes and promotes the bioimpedence device does not claim it's diagnostic, but they do market it aggressively and not always very clearly.

You might want to request a referral now to a well-trained lymphedema therapist for baseline arm measurements, personalized risk-reduction hints, instruction in lymph massage to use prophylactically, and fitting for compression garments for exercise and travel. Here's now to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Be well!
Binney

However, it also seems that LE with the profile I posted is considered rare.

So is mine.