Apr 14, 2007 04:23 PM Binney4 wrote:Ooh, Indi, I'm really sorry you're having all this trouble. Would it help (or not?!) to know your onc team is not alone in failing to recognize your lymphedema (LE) concerns. Many, many of us have fought our way through their ignorance and intimidation, only to find in the end that the reason they act like they know nothing about LE is because it's not taught in our med schools and nurses' training programs.
Okay, I'll try to take this one step at a time and see if it makes any sense to you. Let's start with the misinformation on your risk of developing LE. When they started doing the SNB procedure several years ago they hoped that would lower the risk of LE to 1%, but recent research shows the percentage of arm LE after SNB is actually closer to 10%. More significant for you, the rate of breast LE following lumpectomy with SNB and rads is a whopping 28%. Very possibly YOU, in other words.
Of the symptoms you list, both hand swelling and breast swelling are indicators of LE, as is shoulder pain in some cases, especially if it isn't affected much by the usual pain killers. Your history of both seromas and (especially) infections predisposes you to LE problems and/or indicates the presence of LE already. The high blood pressure is not indicative of LE, but it certainly isn't helped by the pain you're experiencing or the stress of not being able to get help with this.
Should you seek help? ABSOLUTELY! Insist on a referral to a qualified LE therapist from any reasonably cooperative member of your medical team. If they roll their eyes at you, ignore them. Make a fuss. Whatever it takes.
Here's what you need to know about therapists: any you see should have at least 135 hours of specifically LE training beyond their PT or OT certification and at least a year's experience treating LE. CALL AND ASK BEFORE YOU GO. While you're at it, ask if they're experienced and comfortable treating breast LE. Do this soon, because the sooner you get treatment the better the outcome -- and the quicker you'll get relief.
Here's a site for finding a qualified therapist near you:
And do check out the Position Papers on Therapy, and Training, at the National Lymphedema Network:
The therapist will be able to evaluate your situation and tell you if it's LE or not and if so, she (or he) will begin therapy, which involves a gentle directional massage, wrapping or other compression, and skin care. LE is for life, but with the skills you learn from a therapist you will be able to get control of it and keep it that way.
Indi, please don't be intimidated. You're definitely on the right track. Once you've gotten an LE evaluation and have your life back in your own control, you can start educating your medical team!
Hugs and prayers for quick relief,