Topic: swelling vs. lymphedema how to tell?

Hi Viktoria,

Sounds like you need to "demand" a referral to a LANA certified lymphedema therapist. To me, and I'm not a medical professional but I have LE, it seems like you might have LE because now your hand is swollen in addition to your arm. That just doesn't seem right. Some doctors just don't have any clue about LE or when to make the referral. You are the patient and it is your body. You should request the referral and don't back down!! You want to rule out LE, or if you do have it, get treatment for it started right away. If the LE goes undiagosed and untreated it will get worse--and then it's harder to get your arm and hand back to the way it was prior to LE. I really hope you will insist on that referral. Do  not take NO for an answer!! If you need back up, take someone with you who can be the "bad guy" and fight the battle with the doc. I took my husband, and just having him in the room got me what I needed.

I had a breast infection after lumpectomy and SNB (only 3 nodes removed). During rads I was put on antibiotics, but I think it was too late, as breast never healed. The pain was intense. Although I could not visibly see any swelling in my arm or hand, both were larger than my left--and I am left handed. So right away the LE therapist knew I had LE. You can even have LE without any visible swelling. There is some research going on at UCSF that hopefully will mean the new measurement of LE from displacement of fluid and/or electrical measurement. That way LE can be determined BEFORE swelling and perhaps will be reversible for many bc survivors who develop LE.

I'm sure others will be along to give their personal opinions. There are no blood tests, or scans at this time to determine if you have LE. The LE therapist will measure your arm and hand at set intervals along the length. Then he/she will measure the other arm & hand. The difference in the arm & hand measurements will be the first indication that you might have developed LE. The therapist will ask many questions and take your medical history. Then he/she will determine what therapy to begin with. You will probably be wrapped and taught manual lymph drainage massage, and will have several appointments with the therapist to measure progress in reducing the swelling.

Are you having pain in your breast from the infection and swelling? You say you are having pain in your hand. Pain can also be a sign of LE.

Don't delay--call today--and insist on that referral. If you are not sure who to see in your area, or who will take your insurance, you can check out the National Lymphedema Network (NLN) online. They have a list of all the certified LE therapists that are in each state. Hopefully one will be nearby you. Be sure to check the credentials of the therapist. Many will say they are an LE therapist, but they might not be certified. Someone who is a PT, and not certified, can do more damage to you than you already have with your current swelling.

Please keep us posted on how you are doing. And I'm sorry to welcome you here. But there are many experienced LE sisters on this board so be sure to ask any question you can think of.

LE Hugs,

Thanks Bygrace and Binney!!

     I went to the web sites you gals suggested and learned alot. Then I saw my oncologist with facts about lymphedema and she got me a referral to the lymphedema clinic so now I can start getting treatment.  I'm not sure what all they do but it sounds like massage and exercises should help. I would be grateful if the swelling doesn't get any worse cause right now I can still use that arm normally.

     Again thanks for all your wonderful information and support!