Johns Hopkins discusses LE pain

LtotheK: many reasons: ignorance of the disease and no idea how to treat it, a feeling of shame and remorse for causing harm while treating the disease, and a dismissal of it as trivial.

In my experience, when health care professionals get frustrated, many will try and avoid the situation.

Also, in breast cancer there are many "cooks": the surgeon, the med onc, the rad onc, the gyn, the primary care--and sometimes it's just so easy to pass the buck or assume someone else is responsible.

I teach in a medical school, and my medical students are taught about the lymphatic system in anatomy, but learn nothing about lymphedema. Also, I've attended continuing medical education courses and board certification reviews for many years, and it's simply not a topic that is ever explored. It's ignored.

Stanley Rockson MD of Stanford says the average physician has received 15 minutes of education on the lymph system.

I just had a long talk with a breast health center physician who is piloting bioimpedance, and he finds ignorance of LE rampant: he has a grant to measure patients pre-op and at all post op visits, and if the number changes by 10, he starts treatment. And he uses bioimpedance to guage how treatment is going.

What he told me is that the machine is free, the wires are $40 a patient each time. He has a grant, but in the real world, it seems outrageous to charge that much for measurement.

So, in my case--the surgeon was clueless and horrified, the rad onc told me that rads never contributed to LE (?!), and the med onc just never really addressed it. My heroine is my primary who admitted she doesn't know as much as she'd like but writes me scripts and supports me solidly. 

When Brigham and Womens wants to make LE a "sentinel event": a serious error, it gives me a strong clue about how LE is perceived. And no one wants to make an error.

Sorry for the rant.

Kira

Just have to post the new Avon White Paper, written by experts in the field-by the time we're visibly swollen, things have progressed significantly.

http://www.avonfoundation.org/programs-and-events/lymphedema-information.html

I can excuse medical students for ignornance--but not breast surgeons, med oncs, rad oncs--as Dr. Janic Cormier said at the NLN conference (she's a surgeon) "I don't treat LE: I cause it!"

And maybe that's a large part of it: the vast majority of breast surgeons, med oncs and rad oncs don't know how to treat LE--they make a referral and their job is done.

My breast surgeon flat out told me that: she said she had no more responsibility for my LE after the referral--yet I had a huge axillary seroma that was makiing things worse and that she didn't deal with for 5 months. 

If you don't know about the disease or how to treat it, and you dismiss it as a minimal side effect of life saving treatment, then it's not something to take seriously, or learn about. 

Amd Binney, that's simply stunning!

Kira