I ONLY had lymphedema in my chest (in the bilaterally-reconstructed "breast tissue" formerly known as "my abdominal tissue" after DIEP flap) trunk, and abdomen above the hip-to-hip incision. The right arm (the side where I required a full axillary dissection) was completely fine so despite the MULTIPLE surgeons from both a regional, med-school based cancer center's breast-only plastics and onco-surgery department and my oncologist who is on staff at that center and another local cancer center, 11 additional surgeries to drain constant infected seromas and to excise the resulting necrotic tissue in the right breast and abdomen (which never reoccurred after I eventually self-diagnosed, went around all of them to get an appointment with the only lymphedema-trained PT in a 100 mile radius of seven large cancer centers. She confirmed what it was, helped me get the initial swelling under control and a pneumatic pump with a vest and shorts for maintenance. I found if I could keep the right breast under control, the rest would follow.

That was then.

Last year, I had a local recurrence at the mastectomy scar and after everything I had already had been through my NEW breast surgeon recommended exactly what I was going to ask for: a second, bilateral mastectomy with an aesthetic flat closure. Naturally, given that I am me, there were complications under my left arm during surgery and this affected how well the fluid drained to the left. When it returned, the lymphedema was still in the trunk and upper abdomen, but also across my upper back and finally, at last, in the right arm.

Unfortunately, I have such a severe case that I have been carrying 25 pounds of fluid that built up in under 15 days since the first week of May, the PT is overbooked and despite having seen the oncologist, the breast surgeon, and five other physicians in the interim (and having been sent directly to the ER by two of them) nobody has has one word of advice or even a modicum of concern. It's just unbelievable to me.

I thought it was just bloat. Some days I will gain up to 4" around my waist during the day.

I assumed it was just fat. How do you know

I was 1000% unaware of this. I noticed that my stomach was bloating every day. In the A.M. not bad. By dinner I looked 6 months preg. by 7ish pm the swelling was 4" more than it was in the morning. I see my Surgeon tomorrow and ask her, she has been 100% honest with everything so far.

I have a lot of swelling under my arms and along my sides in the chest area.