How do you know its lymphedema?

Some of the swelling could be from surgery - mine took months to calm down. I also had a seroma which was drained twice - it hurt, though. Do you have pain? The surgeon should diagnose that. I developed truncal lymphedema after I started my Lupron shots. It all seems inter-related to me - Physical therapy with a breast cancer specialist has helped immensely. I did not have reconstruction - can you exercise yet? Stretching really helped.

Jarris77, It probably is a form of Lymphedema that you are experiencing. They (studies) have found that people who have other family members with swelling are much more prone to LE after breast cancer surgery/treatment. . The reason was explained to me (basically) that some people have lymph super-highways in their bodies, and some of us have back-roads for lymphatic systems. So in our case, Lymph does not move easily and we swell even without Lymph nodes are removed.

I agree with you, I have a board certified LE therapist who never knows the answers to a question and I learn very little from her. And this is my 3rd one, all the same, they teach how to wrap, but not much else goes on with them. So I understand how you feel.

You can read on this forum of women who have blood drawls on their feet, but if you have leg swelling too, then I don't know the answer. I personally use my *best* arm for blood draws and blood pressure thinking that arm LE is easier to deal with than leg LE. But that said, I am not sure either.

I hope someone else joins this discussion.

After my surgery I just had this tightness At my armpit. I just thought its bc of surgery and ignore it. And I started exercise (yoga) and the tightness traveled from armpit down to my hand. Finally my index and middle fingers got fat. So I suspected it's LE and the LE specialist confirmed it. She also told me fingers are are hardest to unswell bc so many passages to go thru

Read about rebounding helped the lymphatic sys flow and detox so I bought a rebounder. And fingers are not swelling anymore. It does work.

Mary - I rebound 30 min a day. I follow youtube exercise routine. There's a twin sisters...the beginners version which is only 20 min and I just add 10 more min.

Not really sure what to think.  Are you seeing your doctor soon?  I would want to get it checked out and be sure.

thinking - i didn't get a prescription when i saw the LE specialist. but i did see my BS first for a referral and she told me to try Sloan bc they have a complete program. so i called my MO (from sloan) who gave me a # to call for an appt.

so call first....

I have read in different sites from sufferers and doctors that cold laser is doing good for lymphedema.

I am surprised that nobody has tried it yet

HI Binney

Thank you, I will look again. So far I have not seen enough posts about it and women using this treatment, I only come across posted complaining about L.

...some time later

I have read posts with 'cold laser' mentioned.

So far all those I read seem to be positive about its use.

It does sound like lymphedema, Ciaogina

Are you wearing your sleeve fulltime now?

My main swelly area when I had a flare up, was in my wrist and forearm, and also thumb and 1st 2 fingers.

If you can't see your veins as well on that side (can you see them at all?), and your wrist creases look different from your other hand when you bend your wrist, it most probably is lymphedema.

Another test is to try pinching the skin gently between finger and thumb, and again compare the skin fold thickness with the other side. Finally, press your thumb or finger pad firmly into the swollen area for between 5-10 secs and see if it leaves an imprint. Again, compare with your normal side.

Did your therapist measure circumferences. She should have done. It's not rocket science!

As I say, my swelling was quite localized, and for a few weeks I was advised to do a full wrap at night, and wore my sleeve and glove in the day. I did have a little pad to increase the localized pressure. That regime brought it down well, and now I wear my sleeve for vigorous activity, or when I'm working for long with my hands down, eg gardening, or from time to time just because my arm feels a bit more heavy or achy, and the sleeve really feels good!

When I go walking or hiking, I like to use a pole --- that keeps my hand a bit elevated and the underarm area "open", plus the gripping action works the muscle pump mechanism.

As I just saw your point about tennis, I wanted to add, I joined a dragon boat race team this year, all bc survivors. A number of us wear sleeves. We all do graduated weight training before paddling season starts, and this is most important! The best way to prevent lymphedema is exercise! But you must start low and build slow. Do not exercise to the point of ache, and start with a light load, increasing repetitions in favour of load increases.

I'm sure you can continue tennis, but don't go out at the start of the season and practice for three hours, especially if you don't train over the winter!

In my job, the biggest pain is my glove (I don't have a gauntlet because my sucky fingers swell!) I work in healthcare, so have remove it for hand hygiene for patient contact!

Feel the same way Thinkingpos. They say it can start anytime. Not sure how you distinguish between a spot in arm pit that is truncal edema vs post surgical swelling. Got my arm moving well and my chest looks nice ans flat but it's not improving near the sentinel node spot.

BS said he'd give me a referral to PT if I didn't get shoulder range back. I called office and asked for an Rx for lymph edema. Went to APTA website and looked in link "find a PT" for one specializing in cancer. Found a LANA certified therapist 45 min away. I'm letting HER decide how much activity I can add and how to manage this swelling whatever it is. I have read that if a sleeve isn't perfect it can make you worse. Don't want to take a chance!

Need to go to one that specializes in this. Anyone can teach you shoulder range and stretches. BTW i didn't mention that I'm an experinced PT myself and am clueles.

morewenna--I'm guessing it is LE. Totally sucks!!!! I hate this! I feel like I can't do anything. I didn't ask for this & I know no one does, but why can't we just go through the cancer, chemo & surgery & be done w/it???? Wearing the sleeve & glove make me feel so self-conscious. It's not fair!!! Haven't we been through enough?

Hi, all.

Going to throw in my experiences. Had Rt. Mastectomy surgery in Feb. '14. Oncologist prescribed PT in September after chemo when I complained of arm pain. I also suffered a partial tear in my Rt. rotator cuff over the summer, and had the pain of carpal tunnel before any of this. I was having really bad pain in Sept. and couldn't really do the exercises. The PTherapist said I did not have lymphedema. A couple of months later I was still having a lot of shoulder pain, back pain and pain going down my arm. My GP ordered more PT and this time I am able to do it better, and I have less pain, but still have the shoulder pain and tightness and the pain down my arm and wrist pain with activity. I had to have some fluid drained from my surgery site last week, and someone told me that means a bigger risk of lymphedema. I am so confused at this point not sure what to think. My wrist hurt before, hurts worse now. My shoulder hurts from injury, but also have the tightness of the surgery scar, and some neuropathy from the chemo. I don't know how I will ever get the proper diagnosis. So far I have seen the GP, the MO, an orthopedic doc and a neurologist. None of them had answers, just offered drugs. I am going to ask my PTherapist to re-evaluate me for lymphedema and see what she says.

Just wondered if anyone identifies with any of this, or has any info.

Best wishes!

Mary

maryna8---yes--it's like a carpel tunnel pain for me too. Maybe it's nerve pain we are experiencing. My pt did take measurements and my onc., said no it's not LE. I was literally obsessing over it. But my PT, PS and onc are telling me to stop. It's just difficult to see my wrist not looking like it used to. They basically said this is your new normal, not LE. To wear the sleeve when I feel I need it, massage, and lift weights and to stop obsessing. It is hard to do since we are the ones living with it. I think it's the measurements that tell us if it's LE, so yes, I agree with Chloesmom, to take measurements and do the massage. I am confused though, as to how lifting weights is helpful, but lifting something heavy can trigger it.