Is this a lymphedema flare?

Vera66

I feel like I keep turning to you ladies with these questions, but you all seem far more knowledgeable than I am about lymphedema and my doctors really don't seem to be much help. I was diagnosed with lymphedema in the breast and cording that went from my armpit down my ribs several months after my surgery. I saw a lymphedema therapist and aside from one flareup have done well. Now I'm wondering if this is another flareup or something else. I have a small lump in front of my scar from the sentinel node biopsy slightly above my breast. It looks like a small swelling near the armpit and feels spongy for lack of a better word. I had an MRI in December and an ultrasound in April and both said no evidence of any abnormal nodes. There is nothing hard in the area, it just feels swollen. It's not red or hot, a little bit uncomfortable, but no major pain. Does this sound like lymphedema? Can it flare up in a different place two and a half years after surgery? It has been horribly hot here, so I'm wondering if that has triggered it. Are there any compression products I could get? I am all out of physical therapy visits for the year because I hurt my shoulder (opposite side). Any ideas or suggestions? Thank you all for your help.

MinusTwo

Vera - it would help if you go to My PRofile and fill in your previous diagnosis & treatment to date. You need to make it public for us to see it, but we could give more informed answers. Yes, it could be LE. It can flare up 20 years down the road - anywhere. You're right, most docs don't understand or know much about it. Personally I wouldn't buy a compression product w/o the recommend of an LEPT specialist. Maybe your RO or your OB/Gyn would be useful?

Or it could be a swollen node from your body trying to fight off something else.

Vera66

Thanks for your response. My signature was always public, not sure when that got changed, but thanks for letting me know. I guess I could check in with my OB/gyn and see if they have any suggestions. It's not really too bad right now, but I understand that it can get worse quickly if not dealt with.

Rah2464

Vera you should try and get a referral to a lymphedema therapist. My therapist told me that heat can definitely increase our risk for a flare up, so this hot summer may very well have impacted you. Do you have a good method for self lymphatic massage?

BlueGirlRedState

Vera66 - Lymph swelling, what ever the cause is a concern and should be evaluated, probably by MO. There are several forums on lymphedema on the breastcancer site which can make information harder to find, but lots of experience and ideas out there. I will list some below. I think all these forums get started when someone doesn't find immedieately what they are looking for and because some "lump" discussions while others "split". You also asked about compression garments. Fit is important. My lymphatic therapist referred me to an orthapedic supplier who did their own measurements, and ordered the sleeve and glove. Check with insurance, it may or may not be covered. I was also given an Rx for a pump to use at home. Again, check with insurance for coverage. My measurements were always a little down after therapist used one, so she recommended one for me for home use. The first site on the list is a demonstration of self massage for lymphedema. The last link is forum on this page recommending advocacy for lymphedema since it is not covered by Medicare.

Self Massage https://www.youtube.com/watch?v=sS_WzAdfcSk&feature=youtu.be

https://community.breastcancer.org/forum/64/topics/759378?page=340#idx_10180

https://community.breastcancer.org/forum/64/topics/783789?page=235#idx_7040

https://community.breastcancer.org/forum/64/topics/877028?page=1#idx_10

https://community.breastcancer.org/forum/64/topics/818062?page=22#idx_640

Advocacy https://community.breastcancer.org/forum/110/topics/875580?page=4#post_5571762

MinusTwo

BlueGIrl - my LE was diagnosed by my RO - not my MO. In addition my BS said pooh-pooh. There aren't many docs who are "believers"

But as Rah said, it is critical to see a trained, certified LEPT for the initial measurements, ordering compression garments and teaching you how to do self massage - which is really hard to learn on line with no "touch" factor.

Edited to say, the first time around EVERY doc said 'not likely'. So I researched & found a doc by myself who was the head of wound care & LE at a major hospital. That was who did my first diagnosis and sent me to a medical supply store for exact measurements.

Vera66

Thanks for all the replies and support. Thank you BlueGirl for all those links. That is super helpful. I will look through all of them. My MO diagnosed me in the past, she is open to the idea of lymphedema just doesn't know a ton about it. My BS actually said that she had never heard of truncal lymphedema and seemed to be suggesting that it was all in my head so definitely won't be talking to her! I will ask her for another referral to an LEPT and hopefully the insurance will cover it. I learned self-massage in the past, but now the swelling is in a different area, so I am not sure how to do it there and don't want to make it worse. Thanks again for all the support.

MinusTwo

Vera - be sure to let us know how it goes.

Vera66

Went to my MO to have it checked out. She said that it looks like lymphedema. Referred me to a therapist. I will try to get the insurance to pay. If not I will just pay out of pocket because I want an assessment for compression garments and I want to learn self massage. Thanks again for all the help.

BlueGirlRedState

Vera - fingers crossed for you that you get it under control and that insurance picks up at least some of the cost. It seems like the earlier you take steps to manage, the better. If you are at all inclined to contact your representatives about changes to Medicare so that it does cover lymphedema, check out https://www.stepup-speakout.org/

Vera66

I will definitely do that!

Fab4mom

I just had my axillary node dissection almost three weeks ago. This weekend, I noticed when I was out walking, that the arm on dissection side started to feel heavy and my pinky side is the hand felt a little achey. When I got home and sat for awhile, it went away. I’m not sure if it’s me still healing fro surgery or start if lymphedema. I have an OT lymphedema appointment this week, was just looking for others real life experiences. Also, I did have successful lymph bypass on two vessels during the dissection surgery. That’s why I’m already scheduled for OT, I’m being monitored and tracked for procedure success

MinusTwo

Fab - LE can appear at any time - even 20 years later - and can develop with only a sentinal node taken. At three weeks, it could be just healing but glad you have an appointment. Do make sure that the therapist you are seeing is a certified & trained LEPT.

If you haven't yet spent time on the link below, now is the time. You'll get some good ideas about what to ask.

https://www.stepup-speakout.org/

BlueGirlRedState

Fab4Mom - getting a diagnosis is important, it may or may not be LE. LE was the Dx for me, medical history, ruling out other causes, comparison of swollen arm to other arm. An ultrasound, ordered for clot check, showed lots of fluid, but no clot. The LE therapist did mention a "test" that was not available where I live, I should have asked her what it was.