Nervous to fly...

Cookiegirl, who wouldn't want to celebrate at the end of treatment! And a trip to a warmer climate sounds like a great way to do it.  Good for you!

I don't have enough knowledge to comment on MLD during rads, so perhaps Binney, Kira or someone else with more background can weigh in on that.  

The part of your post that makes me go 'hmmm,' however, is that you notice minor swelling in your left hand. Eight months after surgery that included some node removal, hand swelling most certainly could be LE. Tingling is also a sign of LE, although I think that sometimes it's also a lingering effect of node removal and does not necessarily signal LE.  But combined with hand swelling--I'd be very, very suspicious.  And the most important thought is that unless you've been evaluated by a qualified LE therapist, it's hard to imagine why your doctors are saying they are not concerned. You need a proper LE evaluation!

There have not been any sound, well designed studies on whether to wear compression while flying, and it seems like most expert guidelines say 'yes' if you already have LE and 'maybe' if you don't.  In your case, you aren't diagnosed, but....might you actually have it?  I hope you'll lean on one of the docs, or your primary care MD, to give you a referral for an evaluation to find out.  

You've read our various posts on this, so you probably have seen my observation that what happens to a partially-filled plastic water bottle in flight is more than enough evidence for me that significant pressure changes happen in flight, and I want to do what I can to minimize the impact of that. I would not dream of getting into an airplane, even for a very short flight, without wearing a compression sleeve and gauntlet (and you do need both, so fluid moves up the arm instead of down into the hand).

As for tricks, there are a few--stay well hydrated and even in a two-hour flight, get up and walk the aisle once or twice. Put the hand up in the air, form a fist, and pump that fist twenty times, and do this every hour or so. Avoid salt. Get some exercise in (I'm a big fan of speedy walking) before and after your flight.

You haven't been doing any weight training, so be incredibly careful about overloading your arm with weight, so pack lightly and if you have to lift a case or a bag, keep it quite close to the body and use both arms to lift, and use your legs to get as much of the up-and-down motion as possible. Keep in mind that ten pounds close to the body becomes a much heavier load when held away from the body. I hope you're traveling with a companion who will help with luggage!  

Also, a bag strap digging into the shoulder can interrupt lymph flow, so carry bags and heavy purses on the other side.  

Probably none of the above has been absolutely proven with high-quality studies, but in my view, it is common-sense to take these simple cautions, which really are not very hard to do. I've never understood any argument that says these are not worth doing.

So...have you visited step up, speakout? Here's the page on finding a qualified therapist, and it's a good idea to know who's qualified before asking for a referral, so you don't waste time with someone who learned about LE in a weekend class. http://stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

And, when you get to that sunny vacation spot (which sounds wonderful to me on this snowy day where I live!), keep in mind some other precautions: sunscreen and insect repellent!  You are at risk of LE even if it does turn out that you don't in fact have it now. Both bug bites and sunburn send lymphatic fluid to the rescue, and it's certainly possible that either event could trigger swelling, or even cellulitis, which is dangerous and to which those of us with LE are pretty susceptible.

Final strategy: Do what you can to reduce risks, but don't let LE or its threat stop you from living your life, so...have fun on that trip!

Carol

Cookie, somehow I misunderstood your surgery date, but even though it was more recent than I thought, the hand swelling raises a big red flag in my opinion.  If it were me, I'd get that evaluation now.  I hope Kira or Binney come along with any observations about whether an LE evaluation is in anyway not a good idea while you're getting rads.

Arm-as-flotation-device is toooooo funny, and of course, we never want anyone to find out if it works!

I forgot one more 'trick' while flying, which is to take deep belly breaths every so often. You want to fill your lower abdominal cavity with air, slowly, and then slowly exhale. This actually prompts the movement of lymph through the body, and if you're not doing it with a bunch of loud sighs, it's possible to do this discreetly while flying.  

Carol

When I used to work for a rad onc, so many women scheduled trips for the end of treatment, and I always was worried about them, as their skin was often at its worst, and the whole quadrant was inflammed.

One woman, I made sure she had prophylactic antibiotics to travel with, and it turned out to be a good thing, as she developed a whopping breast cellulitis in a country with less than optimal health care. She took the antibiotics and flew back. She brought back the records in another language--they insisted she be admitted, but she was terrified of the health care--wisely, IMO.

So, back to Cookiegirl (and I did get confused with Cookiegal here): if you have hand swelling, you should be evaluated by a LE therapist ASAP and strongly consider getting well fitting compression garments for the flight--to include your hand and arm.

You said you only have problems in flights over 4 1/2 hours--if I read the first post correctly--and that concerns me too, that you've swollen with air travel before.

Lymphatic transport capacity is our body's ability to remove lymph fluid from a quadrant of the body: it is lowered by surgery and radiation and can be overwhelmed by high demand and when it's overwhelmed, lymphedema develops, and for some strange reason, once that threshold is crossed you have the condition permanently, although with good treatment, many women (and men) find it regresses to a very minimal stage.

So, you don't want to overwhelm the body's capacity to remove lymph fluid, and you're at a precarious place at the end of rads, as the quadrant is inflammed--bringing more lymph flow to it--so I'd advise getting a LE therapist evaluation and strong consideration of well fitting garments for flight--they can be lower compression--15-20mm for the sleeve, but strongly consider them and get the hand swelling evaluated.

Just my opinion.

Link to how to find a therapist

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Link to the "controversy" over use of compression for at risk women

http://www.stepup-speakout.org/Controversial%20Studies%20on%20Compression%20Garments%20when%20Flying.htm

Cookiegirl: I always had feet swelling on long flights, and who knows it that meant my lymphatic system wasn't the most robust? Once, Nordy who has LE and is a great athlete, and was trained as a LE therapist, wrote that they used to ask the patients: did you swell when pregnant? Did you swell on air flights? and some other swelling questions.

There's a big push in the LE research community to identify "high risk" women--well, some of us have genetic predispositions, and some of us have higher risk due to our treatment and I always think that we go through periods of higher risk: during rads--and sadly, after rads as the tissue gets fibrotic, during chemo, post-op.

I totally identify with the desire to get the normal back, I'd just say, be aware of the risk posed by air flight and the fact that you have some hand swelling, and approach the trip well informed about the risk of air flight triggering LE, and get checked out and informed to make sure you don't have swelling already.

Those of us with LE have had to give up somethings--like I don't play tennis anymore, but we also work with the triggers and thanks to Carol and Nordy and NatsFan and others--we live active lives and exercise. It's not about self-denial, it's about avoiding and/or managing a chronic condition.

Hope you never join the "swell sorority" but please err on the side of caution.

Hi,

I have just a smidge of LE, it comes and goes... I fly quite a bit for business, just did Auckland - Los Angeles yesterday. This is my routine- 2 capsules of Venastat and wrapping my arm with an old fashion ace bandage. I also wear compression socks, get them from the drug store. My theory is these help keep the system moving.

Venastat contains an all-natural standardized horse chestnut seed extract.



I haven't had any problems!!! Knock on wood!!!



Best,

Stacey

Cookiegirl: no one can give you specific advice about flying except your own lymphedema therapist, and the advice of the NLN is that people with lymphedema fly compressed and high risk people consider it.

The fact that you have hand swelling is a "red flag" that you may be developing lymphedema, and should really be evaluated, and get a referral to a qualified therapist, as few physicians are able to make the diagnosis and none are trained to treat it.

Stacey: ACE bandages have too high of a resting pressure and can put so much pressure on the skin that they can collapse and harm lymphatics. A better approach may be to get fitted for compression garments. In lymphedema, the short stretch bandages look like ACE bandages, but they don't have the high stretch.

Cookiegirl

Your hand swelling really concerns me.  You also say you have actually had issues on past flights. I  dont think anyone wants to alarm you, and we certainly hope for the best, but I just have to say , my only "Real" symptom was when my ring became tight.  Pretty subtle.  I have completely full ROM.  No issues there whatsoever.

I have read all the studies and I know there is controversy, but I would never board an airplane without a sleeve and an RX glove.

In your case, I would not  fly without an eval. from a good LE therapist.

Wishing you the best!

Stacey, welcome to you too! So glad you've come along, and I hope you'll find this forum as welcoming and helpful as I do. Your reference to a "smidge" of lymphedema reminded me of that old saw about being "a little bit pregnant"! Lymphedema is a progressive disease, which often starts out as a come-and-go thing. (Usually when it's playing that game it disappears the minute you get in to show it to your doctor!) At any rate, that's an early warning sign, and treating it effectively at this very early stage can stop (or at least delay) progression.

The trouble with lymphedema progression is that it's so invisible in the beginning stages. Swelling is only one sign, the only obvious one. It's what's going on inside that is the problem. Untreated (or poorly treated) lymphedema silently alters the tissue, layering fibrotic tissue and abnormal adipose (fat) tissue under the skin, where it eventually becomes a permanent hardness. Over time it also creates changes in texture of the skin, and later the pores may leak caustic lymph fluid, causing open sores that are very hard to heal. Untreated lymphedema also greatly increases our risk of serious, systemic infection (cellulitis, usually).

For some reason that I'll never understand, our doctors are barely aware of this, and they don't tell us anything about it or even act like it's anything but a minor inconvenience. It is, in fact, a serious, chronic medical condition that requires skill and care to manage properly, and it'd sure be decent of them to at least learn about it before they dismiss it (and us!)

Be well!
Binney

Cookiegirl, I have a 65-page self-study course about LE, written for nurses. It's in the form of a pdf file, and if you (or anyone else) would like to have the pdf to send or give to your care team, PM me and we'll work out a way to get it to you.  They should do better for their BC patients than photocopy a pamphlet.