How Was Your Lymphedema Diagnosed?

I woke up from BMX, 11 nodes out surgery with my entire arm and hand swollen. Yes, that quick.

Get a referral to a trained and certified lymphedema therapist for a diagnosis and treatment plan. It sounds like you may have localized lymphedema at the inner elbow, a common site. It also sounds to me that the breast radiation has caused breast lymphedema or delayed breast cellulitis. Both can be helped with manual lymph drainage to reduce swelling, and compression to maintain the reduction.

See the discussion on breast lymphedema on my web site at www.lymphactivist.org RESEARCH --> BREAST LYMPHEDEMA --> For Therapists.

Even before surgery, my BS' NP measured me for a sleeve & gauntlet because I was planning to travel to Europe once rads were over. Mine was diagnosed after seeking a consult for cording in my right inner forearm 2 weeks after finishing rads. By the time of my appt., the cord had popped, but I mentioned to the LE specialist (Dr. Joseph L. Feldman, a founder of LANA) that I had some finger swelling during my flight home. Probably due to a combination of the salty airline food and the gauntlet being too short (didn't cover my knuckles), but he diagnosed me with Stage 0 LE despite the difference in measurements being due to my R arm being the dominant one, only so that Medicare would pay for my PT sessions. I still follow all precautions—compression during resistance & weight training (the latter of which I worked up to very gradually), for flights >4 hrs, repetitive arm motion against resistance, and trips to high altitudes. Staying out of saunas & steam rooms, keeping my R arm out of the hot tub.

Hi JuniperCat,

I have lymphedema of the breast (the whole breast). I don't have the inner elbow swelling, but I had some swelling under my arm (and some cording). It all happened during radiation therapy (for me). I noticed the peau'orange type markings, and so did the radiation techs. My RO diagnosed it and gave me a referral to the outpatient rehab center of the hospital. I wasn't able to do it right away. He advised to wait until after radiation therapy. I was in the last part of the treatment when they were doing the radiation boost that targets the tumor bed. He didn't want anyone massaging it at that point. I also had a very nasty burn near the sentinal node biopsy incision. So, I also had to wait for that to heal.

I'm currently in the last week of lymphedema therapy. There is one thing you may need to know. Make sure to check your insurance plan. My plan only allows me to go to a licensed lymphedema therapist. I'm fortunate that they have 2 at the hospital. I was scheduled with an assistant who did a really good job (but they couldn't schedule me with her again because of my insurance). Sometimes the lymphedema therapy assistants are just as good.

Anyway, the massages have really helped a lot. They've been taping my breast as well. It's all kind of interesting how they can reduce the swelling and smooth it out that way. They also gave me a prescription for a FlexiTouch System and some compression bras. The representative gave me an at home demonstration of the system. It's supposedly uses the same massage technique as a therapist. I'll have to use it an hour a day for the first 6 weeks. I'm hoping I get good results from this system. I'll update anyone who is interested.

Hi Junipercat. There is no widely-used easy diagnostic test for lymphedema. Probably the most common thing done is measurements, but those can be very misleading, and they aren't replicable (meaning one examiner is not likely to get exactly the same measurements as another, even if they were to come one right after the other into the room). Misleading because it can be normal for the dominant arm to be bigger. There are more sophisticated tests, but they're not widely in use.

There are physical exam findings that I bet are better than the measurements, but I don't know if anyone has ever studied them. Simple things like how visible are your veins, or if you pinch up the skin - especially somewhere easy like the back of the hand - how thin is that pinch.

So, unless someone has one of the pieces of sophisticated equipment, which is not likely, a diagnosis is probably going to be made by combining things like exam and measurements.

Also, if you look at a map of the lymphatic system, there is a convergence of them in the area of the inner elbow. It's kind of like the axilla in being a "hub" of lymph travel. My own lymphedema is thickest on the inside of my forearm, worse toward the elbow, which my lymphedema therapist said is a common place.

There's' a great web site, http://www.stepup-speakout.org , which was created by some women who were very active on this board at one time. They may still be - I haven't been on much myself the past few years to know. What I can say, as both a medical professional and a patient with lymphedema, is that the information on that site is going to be more than anybody gets in med school and more accurate than a lot of patient information you'll encounter from very mainstream sources. There's been precious little lymphedema research, but the past 10-15 years have seen a major change in how it's thought about. It takes a while for patient info (and a lot of doctors) to catch up.

Yes, JuniperCat. The therapy has helped a lot with the peau'orange markings. It also helps with the little lumps on the nipple (if you have any). I have to say that there will be some discomfort as they start massaging the areas for manual drainage. Especially when they work through the area of the scar and the nipple. I'm not sure if your breast tissue hardened up like mine did, but I can tell it is much softer now. There's still some swelling. I still get indentations from my bra, but it takes time to route the fluid to a different area of the body. I've only been in therapy for 3 weeks.

Also, my RO saw it as lymphedema because of the symptoms. He didn't say it was caused by radiation therapy. I think they all kind of skate around that question. I only had 2 nodes removed and they were both clear.

Outfield is correct about the measurements too. They'll measure your arm, but the breast is very difficult to measure. I do remember getting a more sophisticated test before my lumpectomy surgery (for the arm and leg). They've been comparing the results to that. My arm measurements have been the same. I don't think anyone gets a breast measurement until you need a compression bra. By then, it's too late.

Dear WeeNelson,

Welcome to the BCO community. We are sorry that your newly diagnosed lymphedema brought you here but glad that you reached out to our community.We hope that you will receive the support and information that you need here from our members. While you are waiting to connect with others check out this information page on Lymphedema on our main site. Let us know how we can help you here. Don't hesitate to reach out to us. The Mods