The other issue/word you could be thinking of is cording. That affects the arm and the breast with pain & lack of mobility. If you had a nurse navigator with your surgeons office or a social worker, they should have a list of PT office that specifically do lymphedema treatment so you aren’t stressed to find one on your own.

I had right upper extremity lymphedema following mastectomy in 2019. My journey with Lymphedema has been long and extensive. There are a few specialists, and some areas physical therapists are used for massage to help with lymph drainage, and some areas occupational therapists are used for the same. Very very few doctors are truly Specialists in Lymphedema. Interestingly plastic surgeons are the general group where you will find some super Specialists who perform testing and sometimes surgery for Lymphedema. I’m not sure where you live but if you do a web search for Lymphedema surgery, not that you’re planning at all to have any surgery done!, You may find a plastic surgeon who is better able to evaluate your current condition whether you have surgery or not. And I am not suggesting the pursuing surgery is the right thing for you!. I was spinning my wheels with my right arm for over a year Religiously attending occupational therapy using a pump using massage, wearing compression garments. My arm only got worse. A friend of a friend mentioned to me. There was a test that would tell exactly exactly what my lymphatic function was. I had never heard of such a thing. No one had ever suggested to me that a test be done and I had been an active treatment For the Lymphedema well over a year. So I did the web search super specialist and scheduled the appointment. But even to schedule the appointment I had to call and talk to their office and answer many many questions. It was evident to them that I needed to at least have a dye test. So I got an appointment for that consultation. I think over the past five years many more cancer facilities are offering tests for patients with Lymphedema. The test will show if there is blockage in your breast area that is preventing the lymph fluid from draining. My case a test in my arm showed that I had absolutely no lymphatic function left in that arm at all. as a result of that, I was eligible to have a VLNT transfer of lymph nodes were removed from my abdomen and carefully stitched into my right arm, connecting these lymph nodes to the blood supply. I think one of the biggest problems at this point, and it is probably improving, is that they really aren’t super Specialists, or are very few, and Lymphedema. Therapist will help with swelling and blockages when you have some lymph function left. But for patients who have a total blockage or have totally lost lymphatic function, patients require super specialist MD. That in my humble opinion has been the biggest missing link. Some of the bigger facilities that do have such Specialists are the major cancer centers, MD, Anderson, and Texas, the Cleveland clinic, Mayo clinic, the James Cancer Center in Columbus, Ohio, rush in Chicago, and probably more that I don’t know about. Best thing I ever did was the web search and making the call to the super specialty department that I did. That started the road to improvement in my arm and with my lymphedema. I shut her to think where I would be now, almost 3 years later with absolutely zero lymphatic function in that arm. How big would it be? How many hospitalizations for cellulitis?. Instead I have a pretty healthy right arm. There’s a small area around my elbow where there are still some blockages and I will touch base with the plastic surgeon this fall and likely have another surgery to put stents in that part of my arm.

If you haven’t had testing, I always call at the dye test And they were various names for the testing. But essentially what they do is inject a dye into the area of concern, and then scan it with a wand that will hopefully show the lymphatic system moving the DYE into your system. If it moves and then stops, it’s showing them exactly where the blockage occurs. In my case, it didn’t move at all so it showed that there was no lymphatic function at all. if you haven’t had such testing, you may want to where you can have this testing done. Good luck! I’m not sure about Lymphedema that is strictly contained in the breast itself, but I would suspect that the super specialty plastic surgeons or if there are other members of that group at the level of a medical doctor specializing in Lymphedema they will know. Problem is finding one! They are out there.

After an ultrasound, MRI finally lymphedema was diagnosed.

Can your oncologist recommend one? Usually each cancer center has one. I had to drive an hour each way. Mine was excellent- also taught my husband how to do it at home.

You probably also need to find a bra fitter ( like a place for women who had mastectomies) . They can fit with compression bra and get a swell spot too. Insurance will cover these( should)