Think I have lymphadema of the non-existent-breast

Suze

My implants were removed 6 weeks ago because of infection.

Have been on antibiotics constantly all this time, more recently via central line, 24/7, because the area is still red and swollen and hard and hot with a LOT of what feels like fluid right by my chest wall and on that side under my arm (much more than the other side). I am also in a lot of pain from time to time.

Now the Infectious Diseseases Doc says he's not even sure it is infection. And now, having read around a bit about lymphadema, I don't, either.

I think that is what I have.  

I know that if it is, it's all bad and it'll be more to worry about than whether or not I have breasts

But right now the thing I am trying frantically to get my head around is....would I ever be able to  have another reconstruction, if this IS lymphadema of the chest?!

 Any experience/wisdom would be so much appreciated.

Binney4

Aw, Suze, I'm so sorry!

What a time you've had in the past six months! Complete roller-coaster. You must be so exhausted with it all. And now huge decisions to try to make, and more treatment to deal with. Suze, this really does end and you get your life back -- even though it sure doesn't look like it at the moment.

Just like everything else you've already been through, if this is lymphedema then you have to live it one step at a time, one day at a time. Today is not the day to worry about another attempt at reconstruction, or to worry that it won't be possible either. Just for the record, and hopefully to allow you to set that whole question aside for now, surgery is possible in an area with lymphedema, but it won't cure the lymphedema. Special preparations and precautions need to be made before surgery to assure quick recovery and infection-free results, but you can deal with that when the time comes.

Today's problem is to heal! Works best if you're able to relax and rest (yeah, right!), so do concentrate on taking care of you -- you're worth the time and patience it takes to move through all this at whatever pace works best for your healing (both the physical and emotional sort!)

If you're suspecting truncal lymphedema, the next professional you'll want to see is a well-trained and experienced lymphedema therapist. S/he'll do an evaluation by history and physical exam, take baseline measurements, answer your questions about lymphedema treatment, and help you get the immediate and long-term help you need to reduce the swelling and pain (!) and get your life back. Here's the good news: lymphedema evaluation and treatment are gentle and non-invasive. Whew!!!

Here's a site for helping you find a good therapist near you. When you get names and numbers, give them a call and ask about their experience treating truncal lymphedema -- that'll give you an idea of their experience, but also of how well you can work with this person:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

And in the meantime, even just temporarily so you can quickly make yourself as comfortable as possible in spite of the implant loss, here's a very friendly website developed by one of our bc.org sisters for women who are "breastless" by choice or by implant disaster:

http://www.breastfree.org

There are stories posted there by women who have gone through what you're going through, and others who decided against reconstruction from the start. There are also pages of reviews of bras and prostheses, lingerie and swimwear. And plenty of coping ideas for all the problems we're likely to encounter.

Let us know how we can help, please! Plenty of (((((hugs!))))) and prayers,
Binney

Suze

Thanks, Binney - I know you're right. I need to deal with this first, before I can worry about recon.

I just desperately want some reassurances that recon is still an option for me. I know it's just another thing I would have to come to terms with, if it's not. But it would be devestating if this was it...it's good to hear that some people DO go on to reconstruct with LE.

I have been to breastfree, and I really do try to be positive about not having new foobs, but honestly - I just hate the thought. I don't want to be like this forever. It doesn't help that it is especially ugly and I've got a lot of swelling and indrawing and it's really unsightly.  Sigh. At some point really soon I have to stop feeling sorry for myself. It's a highly unattractive quality!

Thanks for the response, Binney - I really appreciate it. 

sccruiser

Hi Suze,

I'm so sorry you are going through this. I know what you are feeling as I knew I had LE in my breast (lumpectomy/SNB/rt side) and had a hard time convincing the docs that I did have LE there. After a mast and TRAMflap recon the LE spread beyond my breast and rt arm to include my belly and rt scapula area. I had radiation and it fried my skin so expanders were not an option. This does not happen to all women who choose reconstruction. Many, many women have recon and even if they have a slight swelling that could be LE, if it is caught early it can be reversed--which keeps it at bay. I have many friends who did recon even with LE and they are okay. So please don't lose heart. Just take it one day at a time. If you do find out it is LE, then deal with that first and go from there. 

I always say that every body is different. What affects some does not effect others. We just have to do what we feel is right for our body and ourselves. I am glad I did the recon, but I also have some regrets. So I keep trying to concentrate on what is working to keep me moving.

If I had it to do over again, I probably would still choose the same. Some days are better than others, but I feel more whole somehow with a reconstructed breast especially with my own tissue. I don't believe that docs always know how someone's body will handle the surgery and recovery process. I think they sometimes assume that once the surgery is done, we should all be just fine! I still have LE in my recon'ed breast and I continue to try everything that comes along to get rid of the pain and the swelling. There is so much information out there.

I'm sure when the time comes, you will decide what is best for you. I would never tell another woman whether they should have recon or not. You know what is best for you! The emotional and mental parts of us are important also.

I wish you all the best on your journey. I hope you will come back often and tell us how you are doing; or to ask more questions. I am open to being asked more about my experience. It's been an interesting ride. Not one I would have gladly chosen, but I have learned so much about myself during the past 4 years.

Hugs,

grace 

Binney4

Suze, take your time with the grieving process -- it's uncomfortable, but it's not self-pity, so please don't waste a lot of energy beating yourself up.
Binney

Suze

Thanks Grace and Binney.

Am not dealing with it all very well, really. It is scaring me that they don't seem to know what is going on. And I just want my life back now!

I am really sorry you both had to go through this. If ok I will come back and ask more questions once I know what is going on. It is all just a bit overwhelming right now.