I saw a "lymphedema OT" 1.5 weeks ago, and the visit just didn't sit well with me. The OT seemed quite extremist, and I got the distinct impression that she still believed in the "pamper the arm" method of treatment, contrary to more recent research (which she wasn't well versed in). She also displayed an attitude of "if it's going to happen, then it's going to happen, but meanwhile, let's let it become fixated on avoiding it and letting it become a major focus of your already stressful existence...." I was sent home without a lymphedema sleeve recommendation but with mummy wrapping, when it really didn't seem my arm was that bad. I distinctly felt that the woman did not listen to me.
So, on the recommendations of three other people, I went to a different OT today, and the results were quite different. She measured and noticed that the difference isn't as large as the original measurements. In fact, there's swelling on my right (good) side in places, and she seemed genuinely interested as to why that might be, and recommended that I just get a sleeve for that arm, too, since regardless of why it is swollen, chemo eats lymph nodes and, therefore, I might have some minor lympho going on there. Exactly what I was trying to explain to OT #1.
OT #2 today said "no problem." No need to do anything special. No need to do special exercises or massage, especially not multiple times a day.
Of course, that doesn't mean, as all the studies show, that lymphedema is NOT something to be concerned about. Once I start radiation, the odds of developing it greatly increase. It can show up at any time over the rest of my life. I'll always need to be concerned about injury and infection to my left arm. But I don't need to freak out. I don't do freak out well.
I feel greatly relieved.