Should I fly?

Hi Hopefor30, as a precaution, there is nothing stopping you from having a compression sleeve fitted to be used for flying or heavy work as in gardening.

Hope this helps.  Love n hugs.  Chrissy

hopefor30, I 'm joining the others in suggesting a sleeve and glove or gauntlet. I flew with them a few months after my treatment ended, and it was a lot of flying (12 hour flight, then 5 hour a week later, then another 5 hour flight 10 days later and then another 12 hour flight a week after that).

I developed LE but since it was a year after the trip I highly doubt it had anything to do with it.

Enjoy your trip. Don't let the BC beast stand in the way of you doing anything you want.

Leah

edited to add: I'm changing "highly doubt" to "positive"

Here's the thing with lymphedema...you can develop it right away (like right after surgery), never develop it or develop it months or years after treatment.  Right now there does not appear to be a way to determine who will or who won't develop it and for those who do ...when will they develop it.  It is such a crap shoot.  

MaiTai & Hope for 30,

Where LE is concerned, my mantra is "Better safe than sorry!"  LE can come in spite of all our precautions, but if we can delay or prevent it, then I'm all for doing whatever it takes.  For me that meant sleeves and gloves for flights and heavy work.  I still have stage 0 LE, which comes and then in a few days seems to be gone, but I do my MLD every night, treat every little bite or cut as if it were serious, and I wear those pesky garments when it is recommended and especially if I start getting that now-familiar heavy feeling.  Please take the best care you can of yourself.  It is the only body you will ever have.  I just wish my surgeon had told me the truth, that I'd had ALND on 12 nodes on one side and 9 on the other, so that I would have begun taking precautions a year earlier than I did.  He said he "only removed one or two in the breast tissue.  The pathology report showed the truth, but I didn't get it for a year.  By then I had found this site and read it daily, educating myself as best I could.

Dawn 

Hope, do you have a fear of flying separate and apart from LE?  It could be that you are bringing other anxieties to this.  Do not take the train, by foregoing the thing that causes you anxiety you only reenforce the anxiety.  I say this as a mostly recovered fearful flyer.  

I was concerned about this also. The ladies on this board helped me see that even though the risk in my situation was small, it still did exist. To be proactive was important to me.  i asked my onc for an rx for a sleeve/gauntlet and he REFUSED - several times, in fact.  Finally, again with the help and support of the wonderful ladies in the LE forum, I used the 'if dad says no, ask mom' theory and went to my surgeon, who wrote the rx without a problem.  I got the sleeve/gauntlet and have worn them on several flights now. Not my favorite thing to do, but no big deal and a small step in taking care of myself. I recommend you consider the same course of action. Hopefully your onc will be easier than mine to deal with. (I have since switched oncs and LOVE the new one!)

I had six nodes out.  I'd sooner have my arm amputated than stop air travel--going international places is my reason for living.

I wear a sleeve, I do not have lymphedema.

The truth is, they just don't know what the correct protocol is for prevention.  Some even suggest wearing a sleeve when you don't have LE can precipitate the condition.  Mine is well-fitted, I have a good therapist. But when she tells me what I should and shouldn't do, it is circuitous.  That's because they just don't have the hard data for the most part.

There are great voices here who are the reason I got a sleeve, drink tons of water, order no-salt meals, and do lymphatic drainage when I fly.  I haven't had problems yet, and hope that stays.

But, at some point, you have to live, too. I'm not letting the threat of LE take the one thing I'm most passionate about away from me.

I just returned from my first flight, post surgery.  I followed all the advice on this forum, hydration, reduced salt intake, reduced coffee, exersizes, let others carry my bags, brought along a sleeve, just in case.  All went well!!  Long flights too, from west to east coast.  The people sitting near me might have thought I was strange, doing my arm exersizes but it was all good.  Thank everyone on this forum!!

Peggy, it is strongly recommended to get a gauntlet/glove for your hand.  Some develop LE in their hand, so you want to protect that as well.  I fly with sleeves and gauntlets, as well as UnderArmour compression shirts - but I do already have LE.  If I put these things on before the flight, then keep them on for an hour or two afterward, I've had no issues of increasing problems. It may seem like a hassle, but if you can avoid LE, do it!

I just got my sleeve and gauntlet. I have pretty mild LE in breast and some truncal, but nothing verifiable on my BC arm.  I fly a lot - so they fitted me recently as that is "high risk".  I think I on the hairy edge of having it in my arm - but my LE therapist said the measurements are within the normal range since my BC arm is my dominant arm.  But better safe than sorry.  I exercised today and put it on.  It feels good woo hoo!  I've been a little down about this LE side effect... it's a drag after all we've been through, but trying to stay on top of this and keep my normal activities and not let this take over my life.  

I asked an Onc. and a BS and their answer was the same.

If the operation was only for the sentinel, they both don't foresee any problem with LE (both said it should be very very very rare).

My sentinel operation included 4 nodes (They were taken out as a cluster and not one after the other). They both say it is very common for more than one node to be removed as sentinel. This is not considered as dissection of the lymph nodes or problematic while flying.

Since I haven't taken precautions till now, and flown quite a lot, I think I will keep doing it.

MaiTai, you would get a very different answer from an LE therapist.  Mine averages the risk at 3 - 5% per node. In my case, that's 30% (6 nodes, gosh darn it!)  And the studies really are inconclusive on why some people get LE with 2 nodes, others don't get it with 17.  The bottom line is, if you have had surgery to your nodes, you are at risk. This is why I chose to get a sleeve/glove regardless, and I wear it for travel.

tweetybird - what a coincidence to be seated next to one of the employees who makes the garments!  Glad things went smoothly for you.  I was very relieved to fly without any complications as I had been worrying about this off and on.

MaiTai, my breast surgeon told me that there is a 3-6% lifetime risk on LE with a sentinel node biopsy only.  He's a well respected guy at stanford and only does breast oncology surgery.   I have read that figure in other places too.  Have also read that the risk rises when more than 5 nodes are removed.  Granted 3-6% is a low risk, but it's not zero, so maybe wise to take the precautions, at least within reason.

Rosemary, best way to do that is to get a referral from any member of your healthcare team to a well-trained lymphedema therapist for an evaluation. S/he will take baseline measurements of your arms for future reference, give you personalized risk reduction tips, and fit you for garments to use prophylactically for exercise and travel. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

I sent you a Private Message. Hugs and happy travels!
Binney

Ma Ma,

 By all means, FLY!!!  My paycheck depends on you doing so   I am an airline pilot and finally got back to the cockpit last month after my bout with IDC.  The PT told me that I absolutely had to wear the sleeve while flying and I have done so without any issues. I fly the very long-haul flights to Asia mainly, so I am airborne for many hours. I have a very mild case of Le and the sleeve has helped immensely.  My Onc. also insisted I take an aspirin before each flight and wear compression socks since Tamoxifen increases your risk of DVT.  Moving around a lot is difficult for me since we are pretty well trapped in the cockpit since 9-11, but I get up every hour or so and do some stretches.

This is my first post but I read these boards almost every day during my treatments and found them an invaluable source of info and inspiration. Good luck to you and don't let BC ruin your life.