lymphedema

jpteacher1

I went to see my oncologist yesterday for my six month appointment.  She said everything was great--good lab reports.  I have been on Arimidex since June and doing fairly well.  After we went over my lab reports etc., she said she wanted to do a waist up exam.  She said vitals were good, but she said I had a little lymphedema in my surgical breast.  She said it wasn't in my arms.  She didn't seem worried nor did she tell me to contact anyone.  After I left her office, I thought about it a little more and decided to call my radiologist.  She put in an order for me to have an evaluation by a physical therapist who is trained in lymphedema.  I am now worried.  I have very large breasts to begin with.   I have not noticed any difference since I finished radiation last March, except for the coloring.  It doesn't hurt.  I did some exercises after radiation using a squeeze ball and elevated my arm, during radiation treatment( completed in February).  How will it be determined if I actually have lymphedema or not? 

carol57

jpteacher, my first thought is wow...an oncologist who looks for and recognizes lymphedema!  That's actually very good news, because if she's right, the therapist that your other on-the-ball caregiver is sending you to will get you on the right path to keeping the LE where it is.  It's somewhat challenging to diagnose breast or truncal LE, because unlike an arm, there's not a good way to measure change or a size difference compared to the other breast. Most of us have asymmetrical breasts anyway, and then when you have lumpectomy the anatomy changes and well...measurements just don't work.  So the therapist looks for other indicators.  

These include checking the texture of your skin and feeling for any puffiness just below. Also, he or she will ask you questions to see if you're noticing any other sensations that would suggest lymphedema.  For example, we often feel an achiness, or a slight burning sensation, or tenderness, and especially when the area is rubbed.  Trying on clothing can leave the area feeling pretty raw.  Itching can be part of it, too.  Also, do you have deeper bra marks on that side, compared to on the other side, and is that new (compared to before your surgery)?

Compression and manual lymphatic drainage are the standard treatment to help move the lymphatic fluid, called 'lymph' out of the area where it's pooling. Compression is obvious when we think of an arm--wear a medical compression sleeve plus a glove or gauntlet on the hand--but on the breast, it's harder to achieve.  There are compression bras that some women wear, which sounds worse than I understand it really is.  Or, simpler, sometimes it's a question of inserting a special chip-foam insert in your bra to gently apply pressure where it's needed.  Those are called aptly 'swell spots.'  The therapist you'll be meeting with should give you information about that.

I sure hope you get some answers pronto!  If you haven't discovered it already, here's a website loaded to the gills with information by LE patients for LE patients, on all matters both medical and practical for dealing with the condition: www.stepup-speakout.org. 

The best time to catch lymphedema is when it's hard to catch because it's in early stage development. That's when it's most treatable.  So good for you for being so proactive in calling your radiologist for follow-up.

Everyone in this forum believes that our therapy should always include chocolate.  So take that particular step now!

Hugs to you--

Carol

jpteacher1

Thanks Carol for all the valuable information !!  I feel much better now!