I am over five years out from my diagnosis of breast cancer and mastectomy, within six months of the mastectomy I developed right upper Lymphedema. Occupational therapy, massage, compression garments, pump, lost weight, exercise, weight training, Lymphedema only gets worse. Finally diagnosed with total lack of e in the right upper extremity. Add a Venous lymph node transfer surgery done. Experienced lots of complications, but the VLNT surgery healed well and appears to be working, somewhat. Measurements have stabilized, somewhat. In the meantime, I have two spots, one of the wrist and one of the elbow that support the diagnosis of a blockage. The blockage at the wrist is scheduled for surgery 14 months from now! That is how backed up the surgeon is. The elbow area remains a mystery as the diet test is not really good at showing upper arm blockages. Part of surgery will include use of an ultrasound to determine if there is a vein in the upper arm, that will support a stent as well. Good news, bad news, if I get another bout of cellulitis, I call the surgeon. I bounced to the front of the list! I don’t know whether to vote for that or not. In the meantime, I continue to wear highest compression sleeve and glove, and in facing yet another surgery that may or may not work. Lymphedema for some of us is truly the gift that keeps on giving. It’s frustrating. I used to get it seemed to me to be pretty constant questioning for people until I started just avoiding people. My family and my friends all know and understand the sensitivity of such comments. It is truly just pure strangers usually asking what they think isn’t innocuous question. Some of them are embarrassed when I give them an answer and they realize that they have overstepped or boundary. Some of them are just amazed. avoiding them has been a good strategy for me. I also tend to wear long sleeved garments that hide the sleeve. That has also been helpful, but sometimes difficult to do in the hot summer sun. Cancer is dirty little secret isn’t a strong enough phrase to discuss the level of difficulty and medical issues of people with a high stage of lymphedema. While I still am happy that I have some lymphatic function in that arm. I am also very very sad that it’s not very great function, I have a lot of backflow, a lot of the veins are just seeping out lymph so in the long run, is it all for naught? I so much hope that going forward surgeons learn to be more judicious in their diagnostic and removal of lymphatic tissue and all cancer surgeries. I also hope that treatments for Lymphedema and coverage for necessary. Lymphedema surgeries improves significantly over the next few years. I have to wait 14 months to have surgery because there are so few qualified lymphedema surgeons in the United States of America Who are capable of the surgery that all of them are backed up and it has a serious impact on all of us who so badly need their care. It is beyond sad and beyond frustrating. I think it’s cancer‘s dirty little secret and I think society views swelling, and inflammation as being a character flaw in general, as they do with anything that smacks of a weight issue. So very sad. That said we are lucky to be living in a time Now where there are these super specialists and the ability to take a look at Lymphedema arm and determine exactly what the true problem with it is and sometimes even finding something that makes it a little bit better and I think for some people makes it a lot better. But it is still frustrating. Still little understood by the average person and even by the average physician. One of the best things that ever happened to me was finding a group like this where you could vent with people who have some degree of experience and understanding with how hard it can be.