what can I do?

javagirl39

I am freaking out. I am now experiencing symptoms of lymphedema in my left arm where I had a sentinel node biopsy -- four lymph nodes removed -- in February 2009. I always babied my arm and had no problems with it. Recently I started a new exercise program and it has been very intense that maybe it triggered lymphedema. Today I did not do any exercise but I was outside outdoors all day for a family picnic and it was humid out. I wonder if the humidity made it worse. I am having a problem with my left arm -- can not straighten it out and someone at the picnic commented that it looks swollen but I'm not sure maybe a little. I am really freaking out. I am scared. What can I do?

nowords

I am not sure how Canadian Health Insurance works, but you need to go see a Therapist with experience treating Lymphedema.

Heat and humidity can effect lymphedema. Exercise that gradually increases in intensity is okay for some...I did an intense strength training with a Masters college level personal trainer who moved me up to heavier and heavier weights too soon, as well as continued with exercises that, while they helped my range of motion, they threw my very mild lymphedema into a full blown case because they were counter productive to keeping the lymphedema in check. All that said, you can do nothing and get it.....I have never had the issue of not being able to straighten my arm out...

Therapists teach you how to keep it under control, with exercises that you do at home and garments that you wear as needed. It is inconvenient to say the least but something that you learn to live with.

Binney and Kira have lots of experience with this issue and I am sure they will chime in, or seek them out. Until you see the therapist, hydrate well and lay low on the salt/sodium...helps me out...elevate your arm...

Moderators

javagirl, you're sure to hear from other BCO members who have personal experience and insights for you, but in the meantime, there's helpful information at the main Breastcancer.org site in this section about Lymphedema - and follow the links down the left side of that page for more detail.

Judith and the mods

Estepp

Javagirl....yes... follow the link our moderators posted.

Also... post this same question under this thread... " GRRRRRRRRR I HATE LE.........."

The ladies on that thread know LE ! Kira........ Binney........... they KNOW!

Binney4

Javagirl, I'm so sorry for this crummy new worry! The good news is, there's plenty you can do, so take a deep breath and know you'll be on top of this soon.

When you mention not being able to straighten your arm, you'll want to look into something called Axillary Web Syndrome, or cording. Here's information about it:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

You can get help with it, and an evaluation about any swelling, from a well-trained lymphedema therapist. You'll need a referral from any member of your medical team. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Please keep us posted. We're all here for you -- tell us how we can help!

Gentle hugs,
Binney

kira66715

Javagirl, unfortunately you can develop lymphedema with "just" a sentinel node biopsy--I did and so did Binney.

Lymphedema is triggered when the lymph system can't handle the load on it, which is increased with exercise and heat.

The key is early recognition and early treatment.

There is a new position paper out about lymphedema, and it's very good, but it does include the weight lifting studies--which say that weight lifting can prevent lymphedema, but that wasn't really supported by the study. Unfortunately, a lot of women find that new exercise can trigger lymphedema--it has to be slow and steady--but early treatment can make a huge difference in making sure it doesn't progress.

Here's the link to the paper:

http://www.avonfoundation.org/assets/le-meeting/le-white-paper.pdf

If you read the thread, we're critical of some of it, but overall, it's a great resource.

Right now, I'd suggest backing off the exercise, and we have a link about what to do while waiting for your first lymphedema therapy appointment--there are links on the web page:

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waitingWhat to do While Waiting for Your First Appointment with a Qualified Lymphedema Therapist

DO NOT try and treat this yourself!!! Proper professional treatment is essential to getting control of lymphedema and preventing its progression. Treatment can be expensive and inconvenient, but this condition is life long, potentially disfiguring, disabling and possibly life-threatening (if you get an infection known as cellulitis) so professional evaluation and treatment as soon as possible is essential.

1) Get evaluated promptly by your doctor to rule out other causes for the swelling in your hand/arm, and get a referral to see a well-trained lymphedema therapist;

2) Drink plenty of fluids -- staying well hydrated helps dilute lymph fluid and keep it moving freely;
3) Elevate the swollen arm or hand as much as possible during the day and on pillows at night; support the arm well so that it doesn't tire;

4) Several times a day pause and do some deep breathing -- this helps stimulate the largest lymph vessels in your body;
5) Raise hands over head as high as is comfortable for you, three times a day, and pump fists 20 times;

6) Call for medical help immediately if you have severe pain, redness, fever or feel ill;

7) You can try mild compression gloves by either Sammons Preston or Isotoner® Fingerless Therapeutic Gloves if your hands and/or fingers are swollen until your appointment with your lymphedema therapist. Be sure to bring them along to your appointment;

8) Do NOT use ACE wraps or any other wraps without the advice of your lymphedema therapist after your evaluation and your treatment plan is scheduled.

Let us know how you're doing.

Kira