How to get a correct diagnosis

[LindaF]

I have been diagnosed with lymphedema but have never been given a diagnosis of primary or secondary. I had breast cancer and had 12 axillary lymph nodes removed. However, my lympedema in both lower extremities and I have no arm involvement. One of the therapists said that I must have primary because of this. How do I find out for sure? And, in the long run, does it really matter?

[Marguerite]

Your have a challenging problem! You are at risk of secondary lymphedema because of the breast cancer surgery and you have swelling of the legs which is characteristic of primary lymphedema.

Both types of lymphedema are treated in the same way, so mostly you are right -- it doesn't really matter and you are wise to accept it this way.

BUT since the risk of secondary lymphedema remains throughout life, it does matter. You need to pay close attention to the area at risk because of the breast cancer. Certainly you should follow the precautions of no injections, IVs, blood draws, or blood pressure reading done on the "at risk arm."

Research about lymphedema after breast cancer begins to show that keeping your weight down may help reduce any risk -- and exercise should help the area that is swollen. It also will make you feel better and potentially reduces risk.

Best wishes!!! :)
Marguerite