Lymphedema threat: are we ever out of the woods?

MinusTwo

I'll be interested in the answer since I have breast & truncal LE.

mumuriri

Re: Lymphedema risk and SLND -- I'm having a lumpectomy + SLNB in October. Regarding the risks of lymphedema, afterwards do I always need to wear a compression sleeve + glove on that arm whenever I fly? Or does that only apply if you are getting an ANLD (much higher risk for lymphedema AFAIK)?

Just trying to figure out what precautionary changes I have to make after SLNB and radiation (breast not armpit probably).

LaughingGull

Hi Mumuriri,

Compression sleeves are prescribed for people who have developed lymphedema. Not something one wears as a precaution, on board of planes or out of planes. So you dont need to worry about it.

What I would do in your case is making sure you get measurements from a certififed lymphedema specialist, prior to surgery. This is to have baseline measurements, becuase if you develop a mild case of lymphedema, it may be hard to detect if you dont have a prior measurement.

Then the usual precautions is not to get blood pressure measured on your cancer side, not IVs or punctures, be very careful about any wounds that could get infected.

LaughingGull

ruthbru

Mumuriri, here is a post I made a number of years ago that may have some helpful tips. (I posted it on an exercise thread so there is quite a bit about exercise in it).

I had 11 lymph nodes removed, so lymphedema has always been an area of real concern and mindfulness for me. When I had my surgery, there was no one around here to go to for advice, so I did a lot of studying on my own. Here are some thoughts & tips I came up with.

First, I think that whether or not you are prone to LE has mostly to do with how your lymph system handles trauma. I would say most cases (unless you are in a horrible accident or are doing really extreme activities) are neither through any virtue or fault of your own; just a matter of good or bad 'luck'.

That being said, there are many 'little' things that we can do that may reduce the risk of developing LE or minimize flares (these are for people with SNB too):

• No BP, IVs, needles, shots etc. in that arm....consider getting a medical ID bracelet (to wear when traveling anyway). There are some really pretty ones out there that look like jewelry
• Wear gloves when doing yard work, gardening etc.
• Wear sunscreen when out in the sun, bug spray when out with the bugs
• If you get a cut, scrap, bite...wash it with soap/water and slap on a bandage. If you see any sign of infection, get to the Dr. & on antibiotics ASAP
• Be sure to switch arms when carrying your purse, hauling around anything heavy, dragging luggage etc.
• Be careful about saunas, I avoid them, and also manicures and massages (on that quadrant of my body anyway).....not everyone does this, but that's just me.
• Keep a healthy weight
• Keep hydrated, limit alcohol
• Don't wear tight rings, watches, bracelets on that arm (when flying, I put my rings on my other hand & leave them on that side fro a couple hours after I land)
• Also, be sure to keep well hydrated when flying, move your arm around a lot, make fists etc. get up & walk around the cabin (which won't be a problem if you are well-hydrated because you will have to go to the bathroom!), if someone wants to help you hoist your carry on & off the overhead, let them.....maybe think of checking a heavy bag (that's what I do)
• When exercising that arm; start very slowly, take your time...build up weights very slowly...don't skip levels...don't do too many reps in one session. Mix up your exercises, don't work the same muscle groups every day. You may want to work with an experienced trainer (or PT) to help you construct a balanced program.
• One thing I do want to add; after my surgery I was scared to start doing upper body. Neither my surgeon nor my oncologist could give me any good solid advice, so I talked to my GP. What he said was that I DID want to exercise my upper body, that it was important to do so as it would actually build up the lymph system, and although, of course, I should be careful and notice if my arm felt heavy/swollen etc. that I shouldn't be afraid to have it feel a little 'normal' soreness...because anytime you exercise a part of your body that you haven't been using for awhile, of course, it will feel sore. That made sense to me, and gave me 'permission' to get moving.

BCat34

Hello,

Great topic and had to add my own experiences.

I was diagnosed in 2012 and had ALND. I do wear a flight sleeve (formally fitted by LE specialist) and gauntlet on all flights preventively. I was also told by my LE specialist to raise the arm in the air and open and close my fist a few times each flight and to keep the sleeve on for 1/2 the flight duration afterwards before doffing.

I also recommend gloves for housecleaning tasks, and for filing at work. And I’ve got polysporin in my purse in case anything at all happens on my affected arm or hand and try to prevent bug bites, sunburns etc. No blood pressure checks or vaccines on the affected arm. A friend was pulling poison ivy by hand at the cottage and that was her trigger. Pre-cancer not a big deal for her. I think she only had sentinel node biopsy. She had not heard any of the advice I received that I continue to do. Maybe I’m being too cautious. My fingers do swell a bit on hot humid days but otherwise no signs of lymphedema right now.

MinusTwo

Like Ruth - most of my prevention activities are proactive. Original BMX surgery only took sentinal nodes, but I still had minor LE on one side. Second surgery (ALND) & radiation left me with breast & truncal on that opposite side.. There's lot so debate about what works, but I do NOT want the LE to progress down my arm. Hence I do most of what Ruth does - mild compression bra 24/7, ALWAYS gloves & gauntlets when flying and a heavy duty compression bra on on the plane and an hour afterwards.

Rah2464

Minus good point about the compression bra for air travel I hadn't thought of that.

I hope to add some pointers if I get any from the lymphatic seminar coming up.

I do acupuncture on my affected arm once a month. We are very careful with wiping the area prior to placing the needle and while I cannot tell if it reduces my mild swelling, I do get assistance with pain relief.

zjrosenthal

New to Lymphedema. Started in April and am still learning to manage it. Doing the massage daily, using a pump daily and a sleeve during the day and tubi at night. Being followed by the team at Sloan-Kettering. Would like to investigate surgery.

MinusTwo

Welcome ZJ.

Rah - I sprang for an expensive Belisse compression bra for flying. It's the only time I use it so it's lasting very well.

And LW - just remembered that the Belisse bra has velcro on the straps so they can be made shorter or longer to suit your torso. It was considerably more expensive than the Wear Ease/Sydney, but also has hooks & closures in both the front & the back.

Rah2464

Thanks Minus I will check it out.

zjrosenthsal sorry to hear you developed lymphedema. Hope you are able to check into the surgery and if so that it is effective for you.