Questions about lymphedema and how it affects your life.

hapa

I'm hoping some of you will share your experiences with lymphedema with me. What grade is your lymphedema? What do you have to do to manage it? Does it limit the things you can do, and if so how? I've just finished my BMX with ALND and have been recommended a course of radiation to the axilla, chest wall, and nodes. This will put me at high risk of lymphedema so I'm trying to understand what exactly that means before I decide if the risk is worth it. Any information you can give me would be helpful!

Binney4

Hello, hapa, and welcome,

These are all good questions, and I'll try to answer them. My lymphedema is complicated by the fact I had surgery on both sides, so it's bilateral. I also had trouble getting it diagnosed and properly treated, so it had progressed before I could get it under control. You will not have that problem, because you're already aware there's a risk, and you'll be alert and able to get help promptly. Getting treatment early means you will have an easier time of controlling it going forward.

By far the best plan is to get a referral to a well-qualified lymphedema therapist NOW, for baseline arm measurements and personalized risk reduction suggestions. Here's how to find a well-trained therapist near you:

http://www.stepup-speakout.org/Finding_a_Qualified...

And here are some suggestions for lowering your risk of developing lymphedema:

http://www.stepup-speakout.org/riskreduction_for_l...

Because of the BMX, you are already at risk to develop lymphedema. Adding the radiation may increase the risk somewhat, but if that provides you with a way to beat the real beast of breast cancer, it will be more than worth it. There is no comparison. No one here will tell you lymphedema is easy, but it is not life-threatening, and even with bilateral arm and breast-chest lymphedema I'm living a very full and creative life. Bottom line is, we're here to help any way we can. Please keep us posted, and tell us how we can help.

Hopefully others will be alone to share their thoughts.

Gentle hugs,
Binney

hapa

Binney - what exactly do you have to do to manage your lymphedema? Are you wearing a sleeve every day? Anything other than that?

Binney4

Hi, hapa,

Yes, I have bilateral lymphedema, so I wear sleeves and gloves on both arms, and since I have lymphedema in my chest and back as well, I also wear a special compression camisole. I do 15 minutes of special exercises most days, and I'm careful with any kind of cut or scratch--prompt cleaning and use of an antibiotic ointment--because the risk of infection is greater in an area with lymphedema. My right arm is worse than the left, so I use a left-hand-only keyboard with my computer. But we are all different, and what I need will be different from what anyone else might need. Especially if you catch it early, managing lymphedema is easier. Lots of women only use their compression sleeves when they're exercising or traveling, and how much anyone can do with their lymphedema arm differs too. Generally, exercise helps with lymphedema, because the lymph fluid is moved by muscle movement, as long as you start gradually with new kinds of exercise and work up in strength. Swimming is especially good, as the added compression of the water is helpful in controlling it. Some women find salt intake affects their lymphedema, but it doesn't seem to bother mine.

I don't want to make it sound like it's nothing, because it is. Buying garments, learning self-care, remembering to be careful about bug bites or hang nails, arguing with uninformed medical folks about not using your affected arm, finding clothes that look good with your compression garments--none of that is a walk in the park. Feeling out of place with compression garment, or even the fact that our lymphedema is a constant reminder of our battle with breast cancer can be difficult to deal with. But it's all doable. Honest!

Does any of that help? Hope so! Hugs,
Binney

sylviaexmouthuk

Hello Binney4,

Thank you for a most interesting and informative post.

With love and best wishes,

Sylvia.

Binney4

hapa and Sylvia, good morning!

It just occurred to me that there was an article I wrote a couple of years ago about this question, and you might be interested. It's here:

http://www.literarymama.com/columns/seniormama/arc...

We each make our own decisions about how we handle this problem, how we take back control of our lives despite limitations. There's hope in that!

Hugs,
Binney

sylviaexmouthuk

Hello Binney,

Thank you for the link, which I shall have a look at later.

I agree with your words of wisdom at the end of your post.

Love.

Sylvia xxxx

RuthElizabeth

I’m having terrible arm pit pain and surrounding areas. Could this be lymphedema? I already have it, but not sure of this new pai

Binney4

RuthE, lymphedema can certainly cause pain, especially when it affects the arm pit and chest/back area (called "truncal lymphedema), though of course there could be other causes as well. Time to head back to your LE therapist for an evaluation of this new development and, if it's lymphedema, help adjusting your self-care to relieve the pain.

Hoping you soon have real relief. Please let us know what you discover.

Gentle hugs,
Binney