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May 15, 2021 12:22AM
I have had lymphedema for 18 years due to removal of 24 lymph nodes after lumpectomy in 2003. I can't even remember how many therapists I saw, how many times I was wrapped, how many custom sleeves I wore, but for the last 11 years or so, I did nothing. No wraps, no sleeves, just normal hygiene, no vaccines, blood draws, or BP on that arm, and I am fine. Due to the fact that it is about twice the size of my other arm and I am self conscience about it, I cover it up in long sleeves, even in the summer. I have never had an infection in it, it never got worse since ending the wraps and I forget I have it most of the time. I don't baby it or pamper myself. I carry, push, pull things and nothing bad ever happened. Of course I am not stupid, and since I have both shoulders replaced, I am not going to do something that would hurt me, like moving or lifting something extremely heavy, but I don't limit normal activity.
I even had a complete shoulder replacement on that arm and it didn't get worse because they wrapped it for surgery. I used to obsess about it, but no more. When I had a recurrence of cancer and a mastectomy in 2019, it didn't get worse, and I didn't need any more nodes removed since that whole fat pad was removed in 2003.
I totally believe in being proactive and trying to prevent lymphedema, but believe in minimal care once it forms. I look back at all the time and pain I went through because of it and it never mattered in the end. Maybe someday they will come up with a cure. I know that most surgeons don't remove many nodes these days and that is a good thing. Prevention is best! I don't think most doctors care about lymphedema, their attitude is that it isn't their problem, they just refer to therapists. Therapy only goes so far. If you can keep the size close to normal using sleeves etc, great, do it! Just know that it is possible to live garment free and not have issues, if after years. you get fed up with it.
BTW, Medicare won't pay for garments so once on that, it is another out of pocket expense. There are worse things in life.
6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+
12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)