Could it be Edema in one breast, but not in the arm?

Maggerle

Nine (9) weeks ago I had both of my implants changed out (after 13 years) The PS had to do extensive repair (i.e.. shelf work, etc.) on the right side, which is also the side I had BC on and had 14 nodes removed (all negative)...The next morning I had an infection in both breasts, and went through two weeks of antibiotics...I remember @ 2 weeks thinking "Oh my gosh, they are absolutely perfect"...Saw the PS at 3 weeks...A couple of weeks later (5 weeks post surgery) I noticed the right side seemed to be getting bigger and called the office...They deemed it wasn't necessary to come in because I didn't have a fever, no redness or flu symptoms...I've been calling once a week, the past 3 weeks, and they still insist on me waiting 'till my 3 month check up on March 30th...This is M D Anderson, btw...I'm having major issues, in my head, not knowing why this right side is bigger? I don't think my arm is swollen w/edema, and I have never had an issue in 25 years...YES, I'm a 25 year survivor (May 2nd, 1990) I want to address this issue before 3 weeks...Has anyone had edema in just their breast, and did you go to an lymphedema clinic or how was it treated? Btw, both breasts seem relatively soft and moveable, so I'm not really thinking capsular contracture, but who knows what the heck is going on...I don't...I'm so bewildered...

Maggerle

Well, apparently, this doesn't seem to be an interesting topic, but I will diary here by saying I have an ultrasound scheduled for 3 o'clock this afternoon at M D Anderson...I woke up at 2:15 w/pain and decided I needed to get something done NOW...I pitched a hissy fit on their voicemail, promptly at 8 a.m. when they opened, and I was promptly called back, and scheduled for today! If it is fluid behind the implant, I believe she said they would actually put in a drain right there in radiology...If not, then they will refer me to a lymphedema specialist for treatment...Not sure which one is the lesser of two evils, but I'm thinking fluid behind the implant is less permanent and more "fixable"...I've never suffered w/lymphedema in all my 25 years and 3 breast surgeries, so I'm anxious to find out what is going on!

Meadow

Maggerle, so glad you were persistant to be seen! Thankfully, I do trust MDAnderson, so you are in great hands. Do you have a drain from the surgery? I would expect the swelling is from fluid, let's hope it is a quick fix. Please update when you can. Hugs to you.

Maggerle

Thank you Meadow for responding...I have great news, but quite perplexing to say the least...So happy to report they could find no seroma, fluid lumps or bumps, and they do not know why my right side has gotten so much bigger, when they were exactly the same at 2 weeks post op...I ask the nurse about the lymphedema, and she said it would have to be in my arm as well, and it isn't...I did ask the Radiology Doctor that gave me the good news about the ultrasound, and she said (I love lady doctors lol) she couldn't diagnose lymphedema, that it wasn't her area of expertise...But she did say I didn't have fluid at all...So strange that it is bigger, and it has some heat in it too...Another attending nurse suggested it maybe that I am so active (I have a pet sitting biz), and to take it easy...I guess it's all a matter of time...Spring break is coming up, and I'm slammed, and so is my little helper, so I won't be slowing down anytime soon...Thanks again Meadow, for responding to my post, and I will keep you posted...Maggie

Meadow

You are so welcome,yes this is good news, and perplexing. My sweet mom would say, "we must just observe for awhile". Hopefully things will improve soon, if not,I know you will continue to seek answers. Thanks for the update. What a great job, pet sitting! My best to you always

Erica3681

Hi Maggie,

Although the nurse told you it wouldn't be lymphedema unless it was also in your arm, I'm not sure that's accurate. It would at least be worth going over to the Lymphedema forum here and asking about that. There are some real lymphedema experts on that forum.

Maggerle

Erica...Would you believe, even after my visit last Wednesday they said it wasn't lymphedema...But I did go to the Lymphedema forum and got some great information from a couple of gals...Soooo I went to an internist on Friday, and sad to say I was diagnosed w/lymphedema, and referred to a lymphedema and wound clinic...I'll see them next Thursday...When I have gotten over the initial shock of this diagnosis (albeit I wasn't surprised) I know a huge hospital, in Houston, that will be getting a long letter of explanation, along w/literature to back me up, on why the physicians, PA's and nurses need to be educated on lymphedema...I've been trying to tell them I believed I had lymphedema for over 9 weeks now...I believe they had determined me to be a nutcase...I really thank God for this website, or I'd still be in the dark...I just wish I'd been diagnosed a couple of months ago, because I do seem to have it in my right arm now, and my legs have begun to feel heavy...Which, btw, I told the PA and she said "that has nothing to do w/lymphedema"...Can you believe it!

Erica3681

Hi Maggerle,

I'm sorry that it did turn out to be lymphedema, but at least now you know what you're dealing with and will hopefully be able to get it under control soon. As women on the Lymphedema forum probably told you, it's apparently all-too-common that doctors and nurses involved in breast cancer care don't know much about lymphedema. It sounds as if you're going to educate those at your hospital, which is a good thing!

Maggerle

Erica, it is amazing that a highly skilled PS who has been practicing for 40 years missed this? In all fairness, it's probably because most women have an oncologist, and maybe they would be the one to diagnose this? It has been so many many years since I had BC that I don't see anyone, except the PS...The last time I saw him, before this time, he did an exchange about 13 or 14 years ago...I went to him regarding an injury to my right side, last summer, and he recommended an exchange, saying I was suffering from capsular contracture...How a moment in time changes everything...Maybe the blow to the right side caused the lymphedema, or maybe it was the infection I came out of the hospital with...But it is what it is, and now I have no choice but to deal with it...I'm extremely down about it all, but brinnie said, while it's not a piece of cake, things will get better...I sure hope so!