None of MY patients get LE

I think many surgeons are extremely territorial..........I saw it happen first with my husband who had a kidney stone and the surgeon put in a stent. Immediately my husband got a raging fever - back to the hospital - the doctor blamed everything else on the fever, but of course not on the stent........until a week later I had a hissy-fit and INSISTED he take it out. Of course my husband immediately recovered. Then my PS refused to acknowledge that my pain and fever were caused by an infection in my abdominal incision - until he was forced to aspirate the fluid which was cultured and of course it was positive. Then he refused to acknowledge that I had a hernia - kept telling me "normal post-surgical swelling" even months later.......he even insulted me saying "maybe you've gained weight" when in fact I had lost weight. My PCP saw the problem and ordered the cat scan which proved I had a hernia (of course I switched to a new PC then.)..............I've come to believe that some doctors have such huge egos, then are in total denial even if it comes to the point of outright LYING to the patients! I guess to them it's no big deal - they've been lying to themselves for so long, it feels normal to them.

Well... I wonder if they are doing a count so that they can "say" their patients don't get lymphedema... so if he denies it, then their numbers look better???

I have to say, my surgeon in Cali was up on LE... too bad she didn't give me reconstruction options... but I guess being proactive in one area is better than not being proactive in any areas...

So, after i get the LE under control, are they going to say, See You are better now we have cured you you no longer have LE? Or worse, No you aren't swelled you don't have LE.... Like if i was diabetic and i got my blood sugars under control, i'm still gonna be diabetic....  FUME!.

yes, my *other* local hospital does the pre-op arm measurements. Mine doesn't. Ah well.

I would think if your job is to examine patients for LE and you don't spot it, then that could be an unethical level of lack of knowledge, when if your next-door neighbour doesn't spot it, that's simple ignorance. I'm glad they are now teaching that it's okay to be human and forget to do something, not need to cover up mistakes.

I just found what seems to be a stretch mark on the back of my upper arm - Now it's not pretty but it could be useful, like the line of flotsam left behind after a really high tide...swelling has been here...

How does it go - denial, anger, depression, acceptance, adjustment uh, did I miss one?  I'm oscillating between non-directed anger and depression at the mo. Lovely LE.

What a cute little pup! 

I LIKED being in denial. It was a safe place, even if I was wrong. But reality breaks through eventually. 

Bargaining, that's what i forgot. D@m! No wonder it's gone pearshaped, I missed a vital stage!

UGH! 

I have also met some puffy ladies who deny they have LE as well...when I can se that compression is needed. 

As long as surgeons are more concerned with liability than research, I think denial is the name of the game. In my own case, I think nothing went " wrong" in surgery---I think I had too many surgeries in the same area over many years before mastectomy----and my vascular system was not resilient. I blame nobody. But I do think the ER docs who have had me present with early cellulitis and were unable to comprehend that w/o a visible skin break I still  needed  antibiotics with diagnosed LE ----I DUB THEM NIMRODS OF THE HIGHEST ORDER. 

It only takes ten minutes to get educated with the INTERNET. Medical practitioners need to step up.

Moogie 

Anyone who has looked at systems safety could have predicted that making LE a sentinel event would result in complete denial that it ever happens.   There is far too much out there that recognizes that pointing out problems in a way that assigns blame will lead to hiding the problems.  So making it a sentinel event with the associated stigma and trauma to those involved is a big deal, and human nature is to run from pain not to it.  The whole idea behind culture of safety is to identify problem events ASSIGN NO blame, but, identify several steps which could have been taken to correct it or to identify and treat it sooner.  Only when involved workers feel comfortable to identify problems and get help correcting them can you acutally start changing  a system.  That doesn't mean someone feeling unfettered and empowered to point out LE on a clinic visit because they assume the blame in on the surgeon and not how an IV was inserted or a blood pressure done, etc.  It means you constantly identify problem areas like positioning on the OR table, hwo blood pressures are done, how clear signs and wrist bands are warning people who come into the room that the patient is at risk of LE, of watching for it and asking about symptoms and clinic visits and getting it treated.  The concentration is on the system and not the surgone or nurse , when culture turns from accusation and blame to safety and improvement only then will you get positive real changes. 

Sentinel event means high level reporting, multiple meetings of assigning blame along every path of the way that led to the event and write ups and reports.  Anyone who tries to lead and motivate in a positive way to make systems change would recognize what a very lousy idea that was. 

I so agree Kira

To his credit, after my first surgery, my surgeon said that because of the location of my tumor (axillary) and nature of surgery, even though I only had 2 nodes removed, I had a 10-20% chance of LE. After my second surgery (nasty dissection of axilla and arm, ALND level 1 & 2), he said that he still put the odds at 20%. He said I should blame him if I got LE, not the radiation. Even with surgery + radiation, he said my risk was only 20% (not the 50% reported in the literature) because I was very fit, thin and young. So, he certainly didn't pretend it wouldn't happen, but he did minimize the risk. On good days, I am grateful to my surgeon that my LE is mild despite all that was done. But, on bad days, I am furious that he did an ALND 1 & 2 (which I did not consent to) even though my SNB was negative (not even micromets). 

I am never angry with my radiation oncologist. She was perfectly blunt, saying that the radiation would cause additional damage, and realistically, the question was not whether I would get LE, but how bad LE. She took my LE concerns very seriously and kept them in mind when designing radiation tx. When I see her, she always asked about my LE and says how sorry she is that I have it. She has suggested things that no one else has (e.g., sleeping on my side not my back, looking for online LE groups). Heck, she even pointed me to lymphediva sleeves.

Maybe it's just me, but I think a lot of patients would be a lot less angry if their doctors admitted that LE is a real risk rather than deny that it can happen to their patients. - KS1

Binney,

Can I Volunteer for the study without the medical evidence?

Doe, you need a diagnosis of RIBP -- which you have, yes? It doesn't have to be unanimous, or insurance covered, just a diagnosis.

Thanks for the kind words -- really do hope there are pieces there that give some hope and direction, since it's so hard to get that anywhere else!

Onward!
Binney

Agreed -- waiting rots!

If in doubt, email the study author and ask.
Binney