Lymphedema risk and massage

Cecilia, the official advice that some lymphedema therapists I know were taught to give is to have the massage therapist avoid the entire quadrant that has or is at risk of LE. The quadrants are divided by a line from neck to waist (upper two quadrants) and the waist itself (upper and lower quadrants). The quadrant includes the front and the back of the body. So basically it's front and back to the waist, including your arm, on the side where you lost your nodes.

....having said that, it's the official recommendation but I think lots of women do just what jenjenl did, asking to avoid the arm. I suppose that's taking some risk, but a massage that skips one fourth of the body doesn't seem like much of a massage!

The reason for the full-quadrant avoidance recommendation is based on lymphatic science. The superficial lymphatic vessels generally circulate within their own quadrant, and it takes some knowledge to know how, through manual lymphatic drainage (sometimes also called 'massage') to nudge the lymph to cross into an adjacent quadrant. So if you have too much lymph in an arm, deep massage in the quadrant can actually add to the problem, because too much pressure on the superficial lymphatic vessels can shut them down, at least temporarily. The kind of massage that makes us go 'ahhhh' does put a lot of pressure on the lymphatic vessels, so if you already have some blockages from missing nodes and scar tissue from the surgery, a real massage can make it even more difficult for the compromised lymphatic system to move lymph out of the damaged area into healthier areas, and swelling or added swelling can result.

It's not possible to predict with accuracy who will or will not get LE after node removal, so thinking about and taking precautions is incredibly smart. I have LE, which is mild, in my arm and in a few spots on my trunk. I've opted to take massages off my list of life's little pleasures, but that's because I'm pretty motivated to do what it takes to help keep my LE from worsening. If I didn't have it already, I'd be very tempted to have massages from time to time.

Like all things LE, there's just no clear answer to the question. We're all making similar decisions in the dark, because LE risks are just not known with certainty.

Chocolate, however, is never, ever deemed a lymphedema risk. It's why we recommend it so often in this forum, especially when wrestling with LE vs. 'normal life' decisions! I recommend a good dose of it as you continue to evaluate the massage question.

Thanks for your great response Carol- I am just starting 8wks out to research lymphedema, I only had 3 nodes removed but I have always had issues with lower extremity swelling when flying and think venous return is not great so want to ensure lymphatic drainage is maximized. I am looking into how to perform manual drainage- I found a very good handout. Since surgery the back of the operative side arm and upper rib area just posterior to the axilla have felt "boggy" nothing I can see or measure but I am a proactive type LOL. I have always hated any type of massage so not having one will be no hardship for me.

Thanks Carol-

I am going to ask for a referral- I am actually going to measure my own arm circumference and torso until I can get home and get an appointment just to see where things are at. I am mostly wanting to do something proactive til I go home in a week not really treat or diagnose myself.

I am a nurse and I agree no invasive or non-invasive procedures to the operative side extremity. Many of the people working in physician offices and clinics are not nurses so you really have to be your own advocate on this as they just don't always make the connection between your history and taking your blood pressure or more---- sigh One thing I suggest is requesting this is noted in your chart (paper or electronic) so anyone taking care of you has this info front and center.

You definately have to be your own advocate but in my experiences there are many health care professionals who do 'have a clue'.  Since my LE showed itself, I've had 6 surgeries.  Only 1 was I totally knocked out for.  The first 2 were cataract surgeries where I was just given 'happy juice'.  I was allowed to wear my sleeve and glove into both surgeries and there was tape put on it saying 'No BP/IV' by the RN who was monitoring me 'just in case'.  My nest suregery was when I slipped on a dog bone (Gotta love your dogs) in the hall and did a 'really good job' on wrist (LE side) - was knocked out for this surgery but went in with it written on upper arm NO BP NO IV.  The next 2, I was totally awake for (BCC on LE arm and SCC on cheek) but had band on LE wrist stating NO BP NO IV.  Those were done at a VA hospital so they're more used to dealing with men than women with LE but they did know.  My last surgery was at a private hospital for my detached retina and they had a sleeve to go over my sleeve and glove saying not to use arm - I had some 'good' happy juice so not real sure what it said plus the room I was in getting ready to down had a window to the outside and we had a really bad hail storm hit that thanks to the happy juice I was really intrigued with.  

Whole point of my rambling is that you have to be your own advocate.

The best advice I can give you is to find a massage therapist who is certified by a lymphedema management school with a 130hr or better course of instruction. Then you can get not only a massage with minimal danger, but treatment that can serve to PREVENT lymphedema even if it has not yet presented. A recent paper by Zimmermann, et al. showed that by giving manual lymph drainage to breast cancer survivors from day-2 after their cancer treatment they could prevent the onset of lymphedema.

Wow! I wish that I had read this before getting my second pneumonia shot on Valentines Day. I was told prior to that to tell them not to do BP or IVs on that arm. I don't recall vaccinations being mentioned. Even so, I was smart enough to ask my Pharmacist if that arm would be OK to give the shot to. I should have just turned around and had her do the other arm based on my worry. Dumb me. Anyway, the next morning, I woke up with a perfectly rectangular looking allergic reaction just lower to the injection spot. By the way that spot looked a little angry. There were also (about) dime sized allergy looking spots below the rectangular area (about 2" by 2.5"). That was on 2/15/18. I might not have noticed all this had it not been for the whole area being quite painful when I moved my arm certain ways. I was off work that day. The following day, I went back to the pharmacy and showed my arm to a different Pharmacist. She believed it to be a reaction and said that I could try Benadryl etc. I guess they really don't teach them important information like that. Why must it be up to the patient?