Topic: bilateral MX prophalactic concerned about lymphedema

Hi, Mary,

I just wrote to you on the surgery board, but will try to give you a little more information here. I have right arm and truncal lymphedema following a prophylactic mastectomy on my right side (the cancer was on the left). My doctors didn't think that could happen, but I've since met several others here with the same experience, so it is a possibility. The real issue is to do whatever is necessary to defeat the bc risk, and then take the steps you need to to reduce your risk of developing lymphedema. I listed a couple of sites for risk reduction information on the other board.

A good place to find help and reassurance would be with a well-trained lymphedema therapist BEFORE your surgery. S/he can take baseline arm measurements for future reference and give you individualized risk reduction tips, as well as teach you a prophylactic lymph massage technique and even fit you for sleeves and gauntlets to use prophylactically when traveling or exercising. Here's information about how to find one near you:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

If you have the knowledge and preparation in place beforehand, there should be no reason to make this decision based on fear of lymphedema. Better to make it based on hope for a long and cancer-free future!

Gentle hugs,
Binney

Mary, I hear you on this worry, and I'm really sorry about the scary pictures. The lympedema in both my arms was Stage II when I finally got to a decent therapist, but it is now reduced to normal size in both arms, with no fibrosis. I have to fight off medical personnel who think that because my arm isn't as big as an tree limb they should be able to use it for blood draws and IVs. With prompt diagnosis and treatment and on-going self-care there is no reason why anyone's arm should look like those pictures you saw. So, no, with breast cancer-related lymphedema that's properly cared for, that's not common at all.

There are doctors who don't diagnose and refer promptly for therapy, and there are women who opt out of any treatment for lymphedema, but aside from that, if you should develop lymphedema you will be capable of controlling any swelling. And since you're already aware of the possibility of lymphedema, a doctor who hesitates to act will not be a problem for you, so the only issue is your own decision to treat it or not.

On the other hand, lymphedema does interfere with my life. Self-care takes time, compression garments are a bother and at times a humiliation, and occasionally despite my best efforts my stupid lymphedema flares up (requiring extra care). My arms are not painful, though they're uncomfortable when the lymphedema is not controlled, and flares make me both annoyed and frustrated. I've had to modify many activities, but the decisions about those things are still in my control. Just as you already suspect, lymphedema is emotionally difficult.

If you look over the coping tips at StepUp-SpeakOut you'll get an idea of some of the specific problems that women with lymphedema deal with, and also an idea of the up-beat and creative ways they handle them. This is doable, Mary. 

Nothing about breast cancer is easy, and the decisions we have to make are really nerve-wracking. My heart really goes out to you as you struggle with this decision. Please know we're here for you.

Hugs, prayers,
Binney