VISIBLE SIGNS OF LYMPHEDEMA - A PICTORIAL

Thanks lago.  My surgery was in October, and I am not scheduled to see my surgeon until March.  Should I call her and get a referral or should I ask my oncologist who I see a couple of times a week it seems like?

Call your surgeon. This is not your oncologists call. My oncologist was the one I contacted first. I sent her a picture of my 2 arms and she said I had it but didn't offer much as to what to do about it other than to do exercises. A week later when it wasn't getting better I contacted my plastic surgeon. He sent me to a LE MD. The LE MD sent me to a LE therapist.

I still do exercises but different ones than what I had been doing. Also  was taught some massage. 

Sunflower, Lago's experience is unique -- mostly surgeons aren't responsive to lymphedma at all. You can get a referral from any member of your healthcare team, even your PCP, but between your surgeon and your oncologist, my bets are all on the oncologist. Here's a page about how to find a well-trained lymphedema therapist near you:

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

Lymphedema is more than a bothersome arm -- it's staged, just like breast cancer is, and without treatment it will progress. The progression isn't necessarily in the size of the arm, which may not change much or may go up and down. Progression actually involves what's going on INSIDE your arm: hardening of the tissues, inflammation, fat deposition, skin changes, and very high risk for cellulitis (a fast-spreading infection).  Prompt treatment is also key to ease of managing the lymphedema over time, so please don't be put off by any doctor who wants to take a "wait-and-see" approach. The medical professionals who evaluate and treat lymphedema are the well-trained lymphedema therapists, not our surgeons or oncologists, so you want to get in for evaluation as soon as possible.

I'm so sorry you're dealing with this -- one thing after another! But with good care you'll soon be on top of it and moving forward again. Please do keep us posted.

Gentle hugs,
Binney

Binney I have to disagree with you. Lymphedem was caused by the surgery. It was my DSL (a physician) that told me that I should be contacting my surgeon not my Oncologist. My BS did give me a perscription for  sleeves/glove as a preventative for flying soon after surgery. I called my PS because he is doing the follow care right after surgery. If you didn't have any reconstruction started/done then it would be your BS.

Lago, I'm going to vote with Binney and Linda, the cause of LE is important to know, but the treating physician on your team who is most knowledgable about LE and most willing to get you a prompt referral is the one to get the referral from. Patients have a treatment team.

In my case, the surgery clearly caused my LE: came on three weeks post-op, but my breast surgeon was a jerk--flat out told me she "was not responsible" to help me manage it, and her in house LE clinic was suboptimal, so I turned to my PCP for referrals. My onc would be glad to do it, but my PCP is more accessible, and I don't like the in-house LE clinic at my onc's hospital either--the first clinic had Vodder trained LMT's but run as "alternative therapy" by a nutritionist, and the second has a LANA certified PT who was just horrible--as soon as she measured my arms and found no volume change--my LE is in my hand and treated, but I still had cording at that point--she never touched me, but prescribed theraband exercises that caused new cords.

There is no one prescribed member of your team who is responsible for LE: often none of them are knowledgable about it: go with the physician who is most accessible and most responsive.

I work in rad onc and I refer patients all the time: I interviewed all qualified therapists in my region, had my personal experience, and closely monitor patients in treatment--it's still not ideal, but I try.

Kira

Me & my cat are sitting here freezing to death the landlord refused to saend maintenance over to fix het supposed to be fixed a week ago temp in teens predicted tonight.  Decided to ear my compression stockings to keep some of the swelling down & keep my legs warm (although they are tight, they don't seem to 'dd trenches" like all regular socks do....haven't noticed yet anyway.  I do have a small electric heater but it's impossible to heat a large room....my cst is curled up ina  blanket on the couch.....I can't go to sleep.....since April 2010, 3rd month of chemo, I've had elephant ankles, thick, chalky skin on my ankles & feet, ugly ugly ugly.  I looke at my right foot after I took my regular sock after a regular day at work....looked like I had a huge raised hump on top of the foot!   It went down a bit....so far all responses from drs/nurses are shrugs & oh it's fluid retention, like,duh!  no concern at all. nite all.

decided to 

Thanks to Linda and lago and their pictures, I definitely think I have a mild case of lymphadema, and I will see my surgeon next Friday.  I am wanting (needing) to exercise.  What can I do and how do I need to be careful prior to getting compression garments? Or should I go out and get one without a prescription?

I was due to start a pilates and yoga combination class Feb 1.  Both Wed and Fri nights were canceled due to the freeze in Dallas.  I want to go on Monday, but of course I don't want to do anything to make things worse.

Thanks for the photos! I had lumpectomy w/SNB 4 weeks ago and it looks like there might be a little LE developing. Late last week, I mentioned that the arm was feeling "tight" and the area of tenderness increased, like went almost all the way down the inside of my arm. The fellow who did the examination before the med onc came in thought it looked slightly swollen and needed a tape measure to confirm. Then ultrasound w/doppler to rule out blood clot. Still waiting for the referral to LE specialist and will but calling first thing tomorrow!

Thanks all.  I saw my surgeon this morning.  She was very supportive and imediately referred me to a LE clinic located in outpatient rehab at the hospital in dallas that seems to do the most breast related surgeries - Presbyterian.  I've checked out their website and all therapist are LANA certified, and my surgeon likes it because it is managed by a retired breast surgeon.

Fortunately, I was able to get my evaluation appointment on Monday, and then I can go from there.  It looks like I will have therapy several times a week for three to four weeks, is this pretty standard?  Being a teacher, this is going to be hard - but I do want to get it under control as quickly as possible.  At this point, I do not have a debilitating condition and I don't want it to get that way.

Linda - I especially want to thank you for the pictures.  I was suspicious, but busy and consumed with chemo and probably would not have taken action so quickly if not for the pictures on this thread that convinced me that I had lymphadema.  My arms look just like those pictures, and when I went to see my surgeon, there was no question.

I am new at all of this but just had 20 positive lymph nodes removed & everyone is telling me how to watch for lymphedema.  These pictures you posted are priceless.  Thank you so much & good luck to you in the future.

I never had it in my hand or fingers. I felt some discomfort in my upper arm before I saw anything in my lower arm near the wrist.  Currently no swelling in my wrists but do have a little just above.

Your risk for LE is lifetime. Some people get it 10-20 years later. I was in "denial" when I first started to have a little discomfort in my upper arm. Then I saw the swelling and I knew.

Get yourself evaluated. If it is LE the earlier it's treated the easier it will be to treat.

lago:  All of the chords under my implants resolved.  One that runs from the middle up has not for 20 months.  I'm curious what your Dr. or PT told you that he considered in determining that your chords would not go away?

Linda Lou, thank you so much for the great pictures and information.So Helpful! Thank you!!

Hello all, I am a post right mastectomy Jan 29,2010 with 6 SN removed . But I had 2 lumpectomy prior the mastectomy. Then two months after rt mastectomy I lost the tissue expander to infection. So after the last & 5th  surgery which is been about a year ago. I am now starting to have swelling in arm.esp arem pit  & swelling in the tissue where the  rt breast was. I've seen a new plastic surgeon to try to fix my pothole in my rt chest . But when she measured me.  She did find another lump in the tissue where the right breast had been. I have one MRI and will have a repeat in May. They think they're just floating lymph nodes??? I learned more from you guys  then the Docs! So is anybody  had any floating lymph nodes. Do you think that's why starting to have swelling? Also is it true when you travel you need to have us sleeve?    

Hope you all are doing well. {{Hugs}} Gina