VISIBLE SIGNS OF LYMPHEDEMA - A PICTORIAL

Thank you Binney,

I looked at the stepup-speakout site.  I can relate to some of the info.  I have had cording at the bottom of my implants that I have been able to massage away my self.  One rather large cord has been at the top of my left implant for 1+ years now and I have just not been able to massage it away.  It interferes with the movement of my implant.  I'll have to make an appointment with my PS and ask, "OK, you're not my husband so you can answer truthfully.  Have I just gained regular weight or do I have lymphedema?"

I assume when you have lymphedema a weight gain comes with it?

Gina, hello,

I don't know what a "floating node" would be, but have never heard it mentioned as a cause of lymphedema. If the doctors have cleared you to begin lymphedema therapy, that would be a good next step. Treating lymphedema promptly can mean an easier time controling it, and that's a very good thing.

Since it appears that you have some lymphedema in your arm, wearing a well-fitted sleeve and glove or gauntlet (fingerless glove) would be important. If you're also experiencing chest lymphedema you'll also want to consider some kind of chest compression. Here's information about chest/breast lymphedema (it's called truncal lymphedema). At the bottom of that page are some ideas for chest compression:

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

Hope some of that helps! Be well,
Binney

Becky, good for you! So glad you got help early on, but I am sorry about the diagnosis. I so understand the hoping to find out it wasn't lymphedema after all, and then being told it is. But you seem to be taking it all in hand and moving straight toward getting on top of it. Brava! The wrapping stage is clumsy and kinda ugly too, but it sure does work to reduce the swelling. Onward! Please do keep us posted.

Gentle hugs,
Binney

What type of a doctor do you go to to get a diagnosis about lymphedema?

SeaFoobs, any doctor on your team can give you a referral to a lymphedema therapist for evaluation and treatment. My PCP was more open to that than the oncs or the surgeon (who told me no patient of his had ever developed LE, so I couldn't possibly have it!). Whoever will listen to you. It helps if you know who you want to see, so here's the page about how to find a well-trained lymphedema therapist:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Keep us posted!
Binney

SeaFoobs, it's definitely NOT a must. There are only a handful of lymphologists in the U.S., and lago happened to live near one so she took a detour through that route. They normally see patients whose lymphedema is problematical for one reason or another. Evaluation and treatment of lymphedema is normally done by well-qualified lymphedema therapists, not by doctors who specialize in conditions of the lymph system.

There's a project going forward in the U.S. (and separately in Canada) called the Lymphedema Framework Project that intends to draw together specialists in many medical fields to determine protocols for the best treatment of lymphedema and other lymphatic disorders. Perhaps once that happens a specialty in Lymphology will be recognized here, but currently doctors interested in lymphedema specialize in other fields. 

Be well,
Binney

Hi Ladies.........here I a on another thread........I am concerned about lymphedema...the pictures are great, and I have none of the signs, however w;ith a naturally heavy upper arm (bat wings) I 'm concerned if this did happen I would not notice it..........Here is the history.

I had a lumpectomy on March 1th 2011.  The Dr. was not sure about the sentinel node biopsy at the time of surgery, so he removed 10 nodes, (not happy about that), but he said he wanted to be sure......After the pathology came back there was no cancer in any of the nodes he removed.....(happy about that)......Now I am concerned that the removal of more then 5 nodes, can make you more susceptable to Lymphedema.......I understand from Mastectomy patients I know that they got arm excersises to do after surgery........Now I don't see these people anymore so I can't ask them what ones they did, how they are done, and also would the same ones be good for me..........Can any of you ladies tell me if there are exercises that can be done, and also have you ever heard of "wall climbing excersises..........I do remember that one..........After shoulder surgery I had to do that, and was wondering if it is the same.........also how many reps you would do if you were to do it........I really don't want to have to fight lymphemema along with all the other "crap" we have to do.........Thanks ladies.

What to do when you fly??? I have been told to drink a lot of liquid and get up and walk around...not easy when flying, that blood clots are more frequent with those who have LE. andy advise I will wear my sleeve..

I am new to this site. I had a double mass and have le in my right arm both underarms, back and abdomen also in my neck.  I had setup appointments with a le clinic but my PD  had to cancel itl because of Deep Vein Thrombosis.  I don,t know what to do.  Anything I do makes it worse.  Any suggestions???

Simplymarvelous, welcome!

I'm so sorry for the reason you've had to join us, but glad you found us. How frustrating to be swelling and not be able to start therapy! Hang in there, though, and you'll get there! In the meantime, elevating your affected arm will help -- on the back of the couch while watching TV, on pillows at night, and whenever else you can. Drink PLENTY of water (it helps dilute the lymph fluid) and pause from time to time to take deep abdominal breaths (it stimulates the largest lymph vessel in our bodies). A light sports bra or cami that comes up high in the axilla might help provide some comfort and support without adding too much compression. A Maidenform Control It cami, for instance.

I take it your doctor is treating the thrombosis, yes? Until s/he gives you the green light to go ahead with lymphedema therapy, do try to take it easy and not overdo with activity, lifting or exercise, as that can make the swelling worse. Avoid hot showers or baths, as heat can cause swelling as well. Treat any nicks, scratches, burns, cuts, insect bites or hangnails with topical antibiotics promptly, and keep your skin well moisturized with a low-PH lotion (Eucerin or Vanicream, for instance). Watch for any signs of infection (redness, rapid swelling, pain, warmth to the touch, itching, fever) and get help quickly.

Stay in touch, and tell us how we can help!

Gentle hugs,
Binney

my LE is very slight. I do everything I want to. My upper arm on the left side where I had lymph nodes removed is just about 1/3 in larger. My hand has no swelling or anywhere else. I had a lot of lymph nodes removed with OVCA (2003)also as the cancer was in my nodes all over my body, some removed with debulking surgery some just by chemo..

I do  lot of exercises and go to high elevations with no prob, but have not flown since surgery.. I will breathe and do exercises and then get up and down too.

thanks

Thank you Linda Lou for the pictures. I am coming up on 3 years post surgery and I am not dealing with the swelling. I was told if I did not get it right after chemo I would not get it but now I have. I am supposed to go to a doctor for this. I think I might have lifted something too heavy ( a granddaughter) Anyway your pics are just like mine. some days are worse than others. I already wear compression stockings so I think I need a body compression suit. My grandson suggested this! I also have had too much salt lately so I wonder if this was why it showed upo all of a sudden? I do drink a lot of water. I still have blood problems, low hemoglobin mostly but I take Procrit shots and I do worry about blood clots from that.

Carolyn

My doc has not called me about the appointment yet so I will call them to see. They are so busy it may be buried under a stack of stuff. My aunt had it after breast cancer and she had double mast. but only had lympedema on one side. She always wrapped her arm but I am wondering about Keneseosis. I am not sure how to spell that but I know that she did that towards the end of her life. I am going to find out about that if I can.

Carolyn

Howdy,

My surgery (removed 19 lymph nodes right arm) was 1.5 years ago on the right armpit and arm.  The last two weeks I have woken up in the morning with tingling (like a limb that fell asleep) from my wrist to the end of my fingers on that right arm.

My hand and arm are noticibly colder than my left but no perceptible swelling during the tingling.   In fact my arms and hands look identical and as always - nothing like the pictures shown in this thread.  As the day goes on, the tingling and coldness stops.

I know that I read somewhere that tingling is a very early sign of lymphodema.  I called my oncologist office right away and asked for a referral.  I called that referral (physical therapist where I went for a baseline during rads) and the therapist who answered the call thought this was NOT lymphodema but that I must be "sleeping on my arm or with my wrist at a wierd angle" and she suggested I get a wrist cockup at the CVS and try that.

OK - I know I am somewhat more "sensitive" than the normal person on the potential lymphodema, but if y'all could just advise me on these symptoms:

1.  My arm feels different than before - not "heavy" not swollen, just wierd

2.  The tingling/cold has happened only in the morning when I wake up and lasts about an hour, but there is also a "pressure" feeling internal to my arm midway between my elbow and shoulder - like something was pressing on it, cutting off the circulation.  But I don't feel any lumps or constrictions in the arm itself.

3.  My lumpectomy was on my right boob and bigger in cm than expected.  So now I have a hard "fuild filled" cavity on the "outside area" of my right boob facing directly across from the pressure point in my arm.  I figure they must be "related" like on maybe pressing on the other during sleep --- but maybe that's my imagination as well.  If I sleep on my right side I am uncomfortable because the fluid filled cavity hurts.

The therapist told me to try the "cockup" and if that doesn't work to come in.  I'm hesitant now to do anything and think I might be overimaging the situation. But I'm not a hypochrondriac and know I'm not imagining the symptoms.

Any advice?

Pat