Edema of the Breast after Rads

cheerful1

My radiation oncologist released me after telling me I have "edema". She was wonderful but only contracts with my insurance company. Who do I turn to now that treatment is done? I feel like I'm in limbo. There must be someone else out there experiencing this...I'm 2 1/2 months post radiation and have "edema" of the breast. My breast is swollen, itchy, painful and hot at times. I'm aware that I can take ibuprofen for the pain and put ice packs on for the heat, but what do you do about the rest? This is going on around the clock; I'm so uncomfortable. Any suggestions out there?

Leah_S

Cheerful, it sounds like breast lymphedema. You need to get to a lymphedema therapist for treatment. You'll need a script for it,  from rad onc, med onc, BS - whichever will write it.

I suggest you repost this on the LE forum - some of the women there are extremely knowledgeable and will be able to help you.

Best of luck.

Leah

Binney4

Cheerful, welcome to bc.org! I'm really sorry for the reason that brings you here, but glad you found us.

I agree with Leah -- you need to see a well-trained lymphedema therapist for help with the swelling. Sometimes our doctors are slow to recognize breast lymphedema, or they don't really know how to deal with it. You need a referral from any doctor on your team, even your PCP. Here's how to find a qualified lymphedema therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

And here's some information about breast/chest lymphedema (it's called truncal lymphedema):
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

The Lymphedema discussion board here at bc.org is here:
http://community.breastcancer.org/forum/64

Until you get good professional help to move the fluid out of your breast it's really important to be watchful for infection, which can happen quickly becaute the stagnant lymph fluid is warm and protein rich -- bacteria thrive on it. Signs of infection include new swelling or increased pain, itching, redness, warmth to the touch, or a general flu-like feeling. Get help immediately if you experience these things, because this kind of infection spreads rapidly.

We're all here for you, Cheerful -- let us know how we can help,
Binney

cheerful1

I"ve been feeling so alone with this thing and it warms my heart to have someone actually listen and hear what I'm saying. Thank you both for your input and suggestions. It is so appreciated.

elimar86861

Binney4 already pointed out possible infection, which you have to pay attention for and let a doctor know about.  The pain and heat are not good signs.

I did have a puffiness in the breast area, more so after rads, than surgery.   Went to a PT (she was not a Lymphadema specialist, but did have some training in lymph drainage.)   Also had her break up my scar tissue inside and help those "disolving stitches" that did not want to disolve.  I did the lymphadema massage myself at home and it was still another month or so until the extra fluid drained out of the area and I got my age-appropriate sag back.  Now, two years later, I have not had any lasting lymphadema problems.  Hope you can get yours resolved too.

stage1

Thanks for all the information, Ladies.  I finished rads in July and I seemed fine, pain was subsiding, but now, after five months, pain is more intense.  Feels like a headache or toothache in my boob.  I went to the MO the other day, he says it is caused by radiation.  I don't have a fever, so I think it is just that.. 6month Mammogram showed scar tissue, blocking view of any possible recurrance in that area.  I asked for an MRI, he is ordering it, but not sure provider will OK it.  If I get any worse, I will ask to see a PT.  I did not know that PT will help disolve the scar tissur, so thanks, elimar.

LtotheK

From another perspective, my rads onc told me this is completely normal, and can take a year or more to resolve.  Mine has definitely improved, it is still a 1/2 cup size bigger than my other breast.  My skin was also itchy until about 1 month ago (8 months PFR) and also warm to the touch.  It was also sore at times.

Lymphedema is extremely serious, you will need to take good care of yourself the rest of your life to hopefully avoid this horrible condition.  But I don't think that every woman experiencing what my rads onc declared completely expected (after all, it is daily radiation to the breast) is experiencing lymphedema. A trained PT can help you evaluate this, I just want to make sure you don't jump to that conclusion without a really good intake.

elimar86861

stage1,  Just to be more clear, the massage prevented adhesions in the scar area, did not actually disolve the scar tissue.  The massage helped circulate fluids and blood to the area and, because of that and the movement in the area, it helped the stitches to disolve.  They could be felt under the skin like "a string of pearls."

LtotheK,  Also to clarify, when you have edema** in the chest/breast area, that fluid is lymph fluid, so it is lymphedema.  Even tho' my radiologist also told me it was "normal" and "expected" (as it would be any time you have someone slicing thru' the lymph channels in your breast or helping themselves to a handful of nodes) I wanted to do something to prevent the fluid from staying pooled up in the area.  The light massage stokes that I learned (and there is even a You Tube video, people) just helped to direct that fluid elsewhere.  My RO also told me that it could take up to a year to resolve.  He said that is because new lymph channels can form. 

Now I am not sure how all that works, but the people who get the major swelling to the point that they must wear the compression sleeves, obviously had greater injury to their lymph systems either because of extent of surgery, location of surgery, more nodes out, rads was more injurious to their chest area, and/or their bodies could not re-establish enough channels for lymph drainage.  That is a serious condition and what we usually think of just hearing the term "lymphedema."

**Not to be confused with seroma, which is more a pocket of the same type fluid that collects right at the surgical sites (kind of in the "empty space" where you had tissues removed.

LtotheK

I had no idea about the possibility of new lymph channels.  Interesting.  I also take super-good care of myself, but after a while, I had to just let go.  Everything is a possible trigger, from yoga, to too much salt and travel.  I hate this disease so much, and I hate that I just read here a BC sister got LE from Zumba.  Seriously, so much more work needs to be done on this issue. 

In other news, my MRI showed edema in both breasts, both surgical and non-surgical side.  If that's a double-whammy lymphedema, I care to stay in denial.

Here is something I found, perhaps helpful.  A compare and contrast between edema and lymphedema:  http://www.lymphnotes.com/article.php/id/51/

elimar86861

I guess new lymph vessels form in a similar manner to how new blood vessels are formed.

My RO did say that that lymph channels in the chest that are not disturbed can take on the "extra work" required to cover for the vessels that were injured.  I imagine that would be if the area is not too traumatized.

Lymph fluid collects in skin and fat.  I don't think anyone is about to give up their skin, but losing weight is supposed to help with lymphedema.  Presence of fatty tissue could be another variable why of two women getting virtually the same surgery and treatment, only one develops the lymphedema condition.

elimar86861

cheerful1,  How are you?  What was done to help your distress?

stage1

Thank you, elimar.