Getting Through TSA as a Cancer Survivor

As many of you know, recently hubby and I escaped the cold February temps and headed south for a week. We really needed to get away for a lot of reasons. Last year we drove to the same destination. This year we decided to travel by air thanks to “flying stand-by perks” we received via son number one who recently started working part-time at an airport.

“When you fly stand-by, you must be very flexible,” son number one instructed us right off the bat.

This really means direct flights are rare, you must be patient, you must be prepared to get kicked off a flight even after you’ve sat down in your seat and you must remember to be extra polite to the ticketing agents at all times. You get the idea.

Stand-by is just that, stand-by. You stand by hoping and waiting for a seat. We were hoping and waiting for two.

But this post isn’t about flying stand-by; it’s about going through TSA (Transportation Security Administration) as a cancer survivor.

While traveling I started wondering if I had some look to me that said suspicious, watch this one. Also, there seemed to be a lot of inconsistencies at different airports. I guess there must be a lot left up to the individual judgment of TSA workers.

Is this OK?

Maybe, maybe not.

Here are a few examples of my recent experiences going through TSA. Perhaps sharing them will be helpful to someone.

At one airport, I was told I absolutely must remove my hoodie sweatshirt I was wearing, but thankfully not before they made sure I was wearing something underneath. I was. At the other airports, no need, although I did remove it anyway just to simplify things, or so I thought.

When I went through the line at the next stop with hoodie removed (thinking I was saving time), once again, I was pulled aside and told this time I needed a chest pat down. Seriously?

Why? I have no idea.

No problem. I’m pretty used to all kinds of chest pat downs at this point.

Moving on to the head gear… two times I was told I simply must remove my baseball cap. Two times I was told no need. On one occasion when I was required to remove it, I must have looked worn down because the female TSA worker looked at me sympathetically and asked, “Do you think you feel up to removing your cap for me?”

I guess I must have looked more haggard than I thought!

“Yes,” I answered and handed it over, though reluctantly I must admit, as I am still quite self-conscious about going capless in public.

These were my “clothing experiences.”

But wait, there’s more.

Before going through one of the scanners, I realized I might have trouble raising both arms up in the air and over my head as high as the diagram inside the scanner indicated I must, but I managed after telling the guy, “I’m not sure if I can do this.”

“Would you rather go into a different room and have a pat down?” the guy asked.

“Uh, no thanks,” I answered as I managed to get both arms raised high enough I guess, since he let me through.

At the final airport, I attempted to walk through the scanner area again, hoodie and cap removed, thinking I’ve really got this process down now.

But wait!

The TSA agent took one look at me, noticed my lymphedema sleeve and immediately pulled me aside once again.

“What’s that?” she asked.

“A lymphedema sleeve,” I answered.

“What’s it for?”

“I need to wear it for medical reasons,” I explained.

Then she scurried off to seek another opinion from a fellow worker. Had she never seen a lymphedema sleeve before? This was not a small airport I might add.

“She’s wearing a bandage,” she told her fellow worker while covering her mouth so I wouldn’t hear, but of course I heard and so did everyone around me.

“No, it’s a lymphedema sleeve,” I explained once again.

“Can I touch it?” she asked next.

“Yes,” I responded wondering what would happen if I said no.

After she gingerly touched my sleeve (I must admit I felt like screaming out, pretending I was in pain from her touch), I was pulled aside once more to get my palms “read.”

I imagine this was because who knows what I could have had up my sleeve?

Pun intended.

The thing is though, they fit so darn tight there isn’t room for much of anything up a lymphedema sleeve.

Happily, on one connecting flight, we didn’t need to go through TSA at all due to the location of the gates. Loved that.

And of course, hubby went through each and every time with no questions asked.

Granted, I haven’t flown in a while and this was my first time flying wearing my sleeve.

But still, it seems like there should be more consistency in what’s allowed and what isn’t. It seems like TSA workers should be better trained to recognize such things as lymphedema sleeves. It seems as if a little more sensitivity should be part of their job training.

I couldn’t help but wonder how I would have felt one year ago traveling bald and being told I must remove my cap.

I realize this is all very trivial and my inconveniences were very minor. I understand about the necessity for safety and taking every precaution necessary.

But still…

Flying can be stressful these days for anyone.

Flying stand-by can be really stressful.

Flying stand-by as a cancer survivor can be really, really stressful.

Maybe next year we’ll drive again.

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Have you ever flown stand-by?

Do you have a TSA experience (good or bad) to share?

How do you feel about body scanners?








88 thoughts to “Getting Through TSA as a Cancer Survivor”

  1. What a nightmare!

    You hit on another hot button for me, and that is those body scanners. I feel it is such an intrusion and I am so against them. Maybe if I didn’t have the reconstructive surgery or never had breast cancer, they wouldn’t bother me, but I think I could mouth off to the TSA officials, which would get me in trouble.

    You handled yourself really well and reminded us that cancer is always with us, even if we are flying miles away.

    1. Beth, Your position on the scanners is pretty clear I guess! I don’t mind going through them all that much, but I do feel my privacy is invaded when I’m still subjected to a chest pat-down. And I don’t think a lymphedema sleeve should be such a problem. Perhaps a bit more training and bit more consistency is called for. You’re so right, cancer always “travels” with us. That should have been my post title! Thanks for your thoughts.

  2. My goodness, Nancy.

    As if you haven’t already had enough to contend with. Sorry to hear you had to go through that as well. It ought to be blatantly obvious to the staff that there’s no way anybody could sneak anything under a lymphedema sleeve!

    Wishing you all the best,


    1. Ann Marie, Well, I can’t remember if I saw that post! No surprise there, right? I will check it out soon. I’m sure I’ll get a giggle or two when I do. Sometimes we just have to laugh don’t we? Thanks so much for stopping by.

  3. I just flew. I was worried about setting things off and getting a pat-down and having to remove my foob. I didn’t. And I was relieved.
    I also didn’t put my lymphedema sleeve on until after security … maybe I will do that again if I fly.
    But yes, lots of inconsistencies from stories I hear and TSA is obviously not trained to even slightly deal with medical issues at all. 🙁

    1. Brandie, Glad your travel experience was a good one. I was told to put my sleeve on early and leave it on, even for a while after getting to my destination. Plus, they are kind of hard to put on I think, so I wouldn’t really want to do it after TSA, but I suppose that might be something to consider. Flying stand-by added to that issue a bit for sure. I wonder what kind of “medical awareness training” TSA workers do get?? It’s pretty safe to say, not enough. Thanks for your comments.

  4. Oh my!
    I am flying next week and I am planning to try to attempt to take my medication (liquid) onboard and through security with me (with a doctors note of course) as I need to drink it throughout the day and I am on a 7 hour flight. It is going to be interesting and if/when they make me pour it out I am most likely going to be pissed off….make a scene….ask them if they want me to be sick due to lack of medication…and probably end up in the security office for it….oh I am planning on leaving extra early just in case this does happen. I have heard a lot of bad things about those scanners so this time I think I am going to opt for the “pat down” instead.

    I am so sorry you had to deal with all of this crap! You are right, TSA needs to be better educated about medical issues, prosthetics and other medical devices or aids or sleeves. I have often wondered what they think about the port in my chest when they see it in the x-ray machine thingy.

    Never a dull moment huh?

    1. Laura, I think you’ll be fine taking your liquid medication through security if you have that doctor’s note, at least I sure hope so! Leaving a bit early sounds like a good idea. More/better training is undoubtedly a good idea for TSA workers, but… Good luck with your travels! Keep me posted if you can. And yes, never a dull moment is right…Thanks for commenting, Laura.

    2. I flew from Honolulu to Seattle, brought almond butter. I told the security it was for medical reasons no problem and I also asked for the pat down. I have the sleeve and a glove. I was told to wear it on any flight over 3 hours. That is what the people on west coast say. The people on east coast say don’t wear it unless you actually have lymphedema cause it could actually cause the lymphedemia. Not sure if itsvtrye butvi have not worn it. but remember they don’t even want us to get bp on that side… So when I went to ny I handed some cash in an envelope so the flight attendant would check on me every hour in case i fell asleep with my hand down. Every half hour I did exercises. Also they say if you score a flat bed you should not wear the sleeve. Anyone have some good ideas on how to get over the anxiety from this crappy disease. Looking forward to going on another trip, they say I am running away, when I am out of town I forget about bc yep but that damn thing keeps following me, at least in my mind. I am now doing hypnosis tapes.
      Thank you, God bless us one and all.

      1. HawaiianLau, You bring up a good point – confusion remains about what to do or not to do. I’m never sure about wearing the sleeve on flights either. I was told to wear it as a precaution a few years back – I don’t have LE. I do have a lot of edema flareups, so that’s why I was told to wear it, and for awhile, no one was sure whether I had LE or not. More confusion. And yes, the anxiety. Surprisingly perhaps, I don’t experience a lot of that. But I understand why many do. I hope the hypnosis tapes help. Have you tried artistic endeavors like painting, writing or drawing? Some seek out counselling or a support group. Be sure to mention it to your doctors. There are strategies to help. Thank you for sharing.

  5. A few years ago I had an early morning flight out of somewhere in Wyoming or Montana. I was wearing my sleeve & glove. Young male TSA tells me I can’t wear it. I insist it is a medical garment. He then tells me I can wear it, but he has to cut a sample out of it. I say no – loudly. I tell him again that this is a medical garment & he will not touch it! I explain what it is for & that I am a cancer survivor. I insist – every sentence getting louder – that he has absolutely no right to destroy my medical device. I threaten to strip down to prove that I am a breast cancer survivor. I make as much of a fuss as I can – all the while holding up all the other passengers (small airport). If TSA is going to ruin my sleeve & glove, I want everyone in that airport to be a witness. He won’t back down & neither will I. Finally, an older woman – his superior – comes over to see what the problem is. She takes one look at my arm, pushes him against a wall telling him he is so far out of line, & apologizes to me. As I walked away, she was continued yelling at him.

    Yup, it’s enough to make you want to drive!!

    1. Julie, That is an incredible story! Why on earth would he need to cut a sample from your sleeve? To test it or what? It sounds like there was a bit of a power struggle going on there. Good for you for holding your ground! I’m glad he got yelled at. And yes, driving just might be the best way to go whenever possible…Thanks for sharing about one of your travel experiences.

  6. My husband works for an airline and I fly stand-by all the time. It’s a great perk but can quickly turn into a nightmare if there’s bad weather or a bunch of cancellations. I flew back in November, and went through security in Chicago. Didn’t have too much trouble since I don’t wear a sleeve, but I did have to take off my hat, and I was bald at the time. I leveled a penetrating gaze at the security screener, as in, “You better not mess with me, I’ve been through the wringer this year.” They let me go through the regular beeper thing, because I don’t want any more x-rays than I need (back-scatter machine). Not sure if that will work now as my hair is back! But we’ll see. I’m planning to fly in April.

    1. Mary, Yes, flying stand-by is a nice perk when things go smoothly! We encountered a few problems, but… Was it hard removing your hat when you were bald? That would have been highly stressful for me. I know what you mean about not wanting more x-rays. Good luck on your trip next month; I hope all goes well. Let me know! Thanks for adding to this discussion.

  7. I’ve never flown standby. But I did get a pat-down last October when I just happened to have a sample packet of Miralax in my hip pocket. A foil packet. Sounded the alarm three times. Old white-haired granny and her short chemo hair and her packet of Miralax. Dangerous sorta person, doncha think?

    1. WhiteStone, It’s so good to hear from you! Yes, it kind of makes one wonder doesn’t it? But then danger can “show its face” in mysterious ways I guess. Thanks for sharing.

    1. Kathi, Yes, a train might be a good way to go if not venturing overseas. Traveling has become more complicated for many reasons hasn’t it? Maybe that’s why I’m such a home-body. Thanks for the comment.

  8. I will be flying later this summer. Now my only issue will be my Port-A Cath I still have it in my chest never bothered to have it removed because for various things it’s easier to use and my veins are shot.
    Going through a scanner I wonder what the technician will do about the port being number 1 visible through my skin and 2 he might think it’s some secret device lol or explosive….scarey thought!!

    Best thing I suppose is to have a detailed letter from your Oncologist explaining to people that are unaware just what these devices we HAVE to use are for….Kind of silly I know but I just don’t have the patience to deal with those that should be better informed. My feeling is, If you have this job learn what kinds of medical equipment people have to use and don’t assume we are terrorists..

    Love Alli…….xx

    1. Alli, Surely security agents are familiar with port-a-caths! If not, they should be. A note from your doctor sounds like a very good idea. Good luck traveling. You’ll have to report back! Thanks for commenting.

  9. I am so sorry Nancy. Your post reminded me of growing up in Northern Ireland in the 70sa and 80s … this increased airport security here is not unlike what we had to go through in stores, airports, at the entrances and exits to cities and towns. I remember, one night, a soldier had me empty out my entire car, in the snow. I was so obviously a student with all my books and papers from college, a violin – I was going home for Christmas, but I must have looked suspicious! Just a little more training would surely help people understand the kinds of essential medical supplies/equipment people need??
    I never expected to encounter the same kinds of security measures in America. Ironic, huh?

    1. Yvonne, The experience you shared sounds awful. It does make one wonder why they zeroed in on you doesn’t it? It’s really sad we must be so security conscious now days. I understand the need for it, but I do think a bit more training might be called for. Thanks so much for sharing.

    1. Katherine, Good for you for taking control like that before you enter the machine. I’m sure that comment catches them off guard a bit and quiets them down, but maybe not?? Thanks for sharing.

  10. When I read your post about your experiences with the TSA, it reminded me of many I had. One of the more dunique experiences was when we were traveling to my nieces wedding. I had just gotten a mastectomy form, did not yet have my lymphedema sleeve and glove and was wearing fhe layers of bandages. To top it off, of course, I had lost my hair. Knowing there were going to be many pictures, and we were going straight to the rehearsal dinner, I had a poorly fitting wig on. I must have looked very threatening, so the TSA pulled me to the side for the more intrusive “inspection”.
    There were no women on duty, and I would not consent to a male inspection, so I had to wait for the “only” woman to return from breakfast before they would permit me to pass. Twenty minutes later, I had enough. I spoke loudly, “imagine your mother with breast cancer being treated poorly by the TSA.”
    Unbeknownst to me, a reporter and our congressman were going though the scanners and heard me talk. They came over and said, don’t worry, we’ll take care of this for you. A few minutes later, I was on my way to the gate. It took politics and the media to understand in two minutes, what TSA training failed to do in twenty.
    Thanks for sharing Nancy!

    1. Lindsay, Thanks for the compliment! Yes, I hear you. Scanner or pat-down…each of us must choose between the lesser of two evils I guess…

  11. Wow!~

    That is so different than the experience I had when flying back from Texas prior to my wedding a few years back (before 2001).

    We had gone on a red-eye to visit my grandparents over Easter weekend. Before leaving, she gave us a knife and cake serving set for our wedding that had been in the family for years. The knife had at least eight inches of blade, with a decorative handle.

    The red eye was carry-on only. No checked bags allowed. My bag with the knife neatly wrapped in tissue went through the scanner and I was pulled aside. We explained it was for a wedding and we would have checked it if we could, but alas here we were. They just let us go through.

    The rest of the trip was uneventful and the wedding was wonderful – right down to the cake knife and server! And we’re still married!

    Sorry you had so much trouble. Makes one not even want to fly these days. Such a hassle.


    1. Dianne, Sadly, a lot has changed since 2001 hasn’t it? Now days a knife would be quite problematic to say the least! Glad you had an uneventful trip, a wonderful wedding, got to use the special knife and most importantly are still together! Thanks for sharing. My best.

  12. I too hesitate to fly because of TSA. I am mad and you should be too. For all the millions of dollars they have spent we are not secure flying but we have learned to put up with being treated like meat. Write to your airport and tell them of your experiences. Write to your congress person too. The pat downs in any other context would be illegal. The fact that they don’t profile for potential terrorists makes it all a waste of time. Fight back, take names of the TSA personnel who harass or grope you. And. Go read Amy Alkon’s blog:
    Sorry to rant but we need to push back on this anyway we can.

    Search her site for TSA.

    1. Ellana, Thanks for your passionate comment. I never felt harassed, just frustrated and a little dumb-founded. Frankly, I don’t have the drive or energy to take this one on, plus I don’t travel by air that often, but thanks for the info and feel free to rant away. I admire “ranters” like you!

  13. Gosh I never ever thought about all the issues with traveling. I think I would have LOVED to remove my cap and produced a shiny spot to glare in the TSA agent’s eye.

    I can’t believe they had never seen a lymphedema sleeve….what an invasion of pivacy.

    I have a family member who works for TSA and he is a total creep loser…maybe they look for that type.

    1. Savvy Sister, There are a few issues aren’t there? Yes, I couldn’t stop wondering how I would have felt had I been traveling last year when I was bald… You sound way more brave/gutsy than me. I was very surprised by their apparent “surprise” over my lymphedema sleeve. The sleeves aren’t that uncommon. Maybe you should direct your family member to this post! Then again maybe not… ha. Thanks for commenting.

  14. This was so eye opening!

    I will be flying next week for the first time since mastectomy and I still have expanders in and will be wearing a lymphedema sleeve and gauntlet.

    I think I’ll just opt for the pat down since it looks like I’m in for one anyway.

    Thank you all for you passion, your determination and your sense of humor!

    1. Cindy, I hope you found this post helpful as well as eye opening. It will be very interesting to see if you are “targeted.” Let me know how it goes. Good luck and thanks for commenting. Happy travels!

  15. Great post! I received treatment interstate, so flew a bit during that era – I was advised to wear compression garments on my arm/hand and both legs. In a hot climate, none of this was disguisable – I felt like quite a sight getting on the plane, especially during my bandana era. The combined effect of all my paraphanalia was more than a little disconcerting – no more the carefree backpacker, that’s for sure! This did lead to a couple of nice conversations with airport staff who KNEW the significance of such an arm bandage and shared encouraging tales about the loved ones who’d led to them having this knowledge. A long way from your experience with TSA!

    And on the matter of head-coverings – a while back my family decided to go to Bali (which is close to the part of Australia we live in) for a post-treatment celebratory holiday – this is coming up soon. I had to apply for a new passport during the era in which I was almost completely bald. Needless to say, under Australian law no head coverings are allowed in passport photos. I have the most startling passport photo ever – what a reminder of the reason behind the holiday!! I just hope it never leads to awkward conversations at customs…

    1. Liz, Thank you so much for sharing. I guess you are well acquainted with all this… Sometimes it can all be a little disconcerting can’t it? I’m glad to hear you dealt with more knowledgeable TSA workers. Too bad they aren’t all so well-informed about such things. Well, I guess your passport photo will certainly be a memento of sorts won’t it? Good luck with your upcoming travels. Keep me posted on how things go. As someone else mentioned, never a dull moment, right?

  16. Wow, what a terrible experience, Nancy! I have never flown stand-by, and hope never to have to.

    No one in TSA has EVER questioned my lymphedema sleeve in all the air travel I’ve done since 1997 (including flights to Israel and Ireland). So I am shocked that they actually asked you questions about it. You are right: those sleeves are so tight, how could you put anything in them?

    I think the whole-body scanners might keep us safer, but I am uneasy about the whole privacy issue. Especially as a woman with breast cancer with no reconstruction, i.e., a freak.

    Thanks for initiating this lively discussion.

    1. Jan, Yes stand-by is a bit of an additional travel adventure that’s for sure. One must be willing to just go with the flow…It’s interesting to me that you have never been asked about your lymphedema sleeve. I know you have traveled quite a bit too. That’s why I raised the issue of consistency. It seems as if there should be standard guidelines or something, but I guess there aren’t. I’m not overly concerned with the scanners. I don’t like them, but…I am more concerned with the radiation aspect being potentially harmful. I understand your uneasiness, but your are NOT a freak my friend. Thanks for sharing your thoughts, Jan.

  17. I’ve flown standby a lot of years ago with two young children. Carried one and one on my back. I have been bumped many times. Many experiences, adventures. The “price” was right for traveling. Ha. No problems traveling as a breast cancer survivor. My latest problem was traveling with insulin for diabetes. Keeping it cold with the limitations on liquid, ice melting. Think I have it figured out now, with artifical ice cubes. Drs. note has never been asked for but I have it along always. I only know one person who works for TSA, not my favorite person. But I’m sure there are informed people and uninformed people in every profession. Loved your post. It brought to mind many funny experiences I’ve had, that weren’t that funny at the time. Ah Life, Always a Challenge!

    1. Betty, I thought of you when we flew stand-by. I couldn’t remember you getting bumped that often, but of course, you probably did…I can’t imagine flying stand-by with really small children. That would really add to the stress. I imagine traveling with insulin does indeed present some challenges. Glad to hear you have a system down now that works. You’re right, there are informed people and uninformed people in every profession and the TSA is no exception! Thanks for sharing.

  18. Good grief, as if we haven’t been through enough with the cancer business! TSA hassles, too?? I’m so glad you wrote about this and elicited so many replies. I’ll remember everyone’s advice next time I fly. My plastic surgeon printed me a very official looking letter when I was scheduled to fly with my expanders, but sadly I never made that trip bc of the infection under one of those expanders. The letter probably wouldn’t have made a difference and may have even aroused more suspicion. Big sigh.

    1. Nancy, Yes, it was quit the experience. It was interesting reading about others’ experiences. TSA is just one more thing to deal with I guess. Good luck with any future air travel you have in mind. Let me know what you encounter.

  19. I’ve only flown once (round trip) since diagnosis. I was terrified to go through security because I heard all sorts of horror stories, and I had one tissue expander, one prosthetic and my lyphedma sleeve and glove.
    At both airports, no one flinched. I wasn’t questioned, pulled aside, no one commented. Nothing. Made it through just fine.
    My companion though got pulled aside at the airport to have her back felt and hands checked.

    1. Brandie, I’m so glad you had no difficulties. Lucky you! My travel experience was pretty darn stressful. I don’t mind the security stuff, I just expect a bit more sensitivity and awareness from TSA employees. Thanks for commenting.

  20. Love the thought of you scaring them by yelling ouch…I always have wheelchair assistance thanks to treatment wrecking my ability to walk very far and causing my gait to be slow and unsteady. As I was being wheeled to the old x-ray machine I asked quietly that I not be scanned. The attending agent hollers over to the wand guy, “this one has a pace-maker”! Imagine my indignity and then shock that I preferred to tell them I had cancer and not a bad heart. That was in Ft. Lauderdale. Last week I was in Springfield, Mo. Where the girl explained that the new scanners were completely safe. She was nice but a little condescending.

    1. Debbie, You were treated poorly IMO. I’m sorry. Perhaps some TSA workers need a bit more training in awareness about common medical issues/devices/equipment – and also in common courtesy. Thanks for sharing.

  21. Two weeks following a double mastectomy I flew in the US with drain pouches, sleeve, etc. and was not questioned by the TSA. Last October when I changed planes in London after flying from Rome, i was wearing a compression garment similar in style to a long sleeved shirt. I was pulled aside and taken into a room with two women who had me undress so they’ could be sure I was not dangerous. They would not accept my doctor’s note explaining why I was wearing the garment. They said curtly that they do not accept doc’s notes. So, the Brits are probably tougher than our TSA. I understand that Israel’s rules are pretty tough also. I think it all depends who is on duty with the TSA! Incidentally, the extra time it took made me miss my flight to NYC.

    1. Karen, It’s sort of surprising that you weren’t questioned about the drain pouches etc. back then. Good for you for traveling at such a time, or maybe you had no choice about the matter. I’ve heard that before about the British security being really tight. I’m sorry you had to go through that and also that you missed your flight as a result! Were they helpful in getting you on another one? I hope so. I think you’re right, it depends entirely on who is on duty. No surprise there I guess! Thanks for sharing.

  22. Before I had bc I was patted down EVERY TIME I went flew. Now I don’t…remove the boobs remove the threat? I don’t know. I wear a lyphedema sleeve that looks like at tattoo and usually have no questions. Sorry you had to go through the added stress.

    1. Gayle, Interesting that you are patted down less post bc. I have a new sleeve, too, now but I haven’t flown with it yet. It’ll be interesting to see if that changes things at all. Thanks for your comment.

  23. TSA needs to be trained and monitored better. I think it’s horrible. But I’m glad you got through itt, although i’m so sorry you had this crap to deal with.

    Well, I’m flying to the US next week, first time after BC. No sleeve, or anything, but I’ve got walking sticks and I’ve requested wheelchair assistance for my poor knees (nothing to do with BC). My oncologist gave me a note for the anti coagulant i need to inject before the transatlantic flight, so we’ll see. I’m wearing the simplest clothes i can – big sweater and leggings, and no jewlery, so we’ll see.

    I’ve gone through London once lasy autumn, no problem, but I’ve been pulled out of line and patted down in the UK lots of times before BC.

    1. Elaine, It will be very interesting to see how things go for you. It’s good that you have that note from your doctor. Did you see Karen’s experience with a doctor’s note? Not that that will be yours of course, just be sure to allow yourself plenty of time. I hope you have a wonderful trip and that things go smoothly for you. Let me know how it all goes, Elaine. Thanks for the comment and good luck!

  24. I will be traveling this fall for the first time since my diagnosis, surgery, and chemotherapy. I still have a port in place because of the continuing need for herceptin infusions. I was just wondering if anyone has had any recent problems with having a port in place and going through security at airports. We’ll be traveling through two large airports. I have a wrist band and a card explaining the port. Should I have those with me?

    1. Nancy, I definitely would keep the wrist band and the card explaining things with you. Good luck with your travels. Hope you don’t encounter problems with TSA. You don’t need that! Keep me posted.

  25. I was looking for information on the policies at airport regarding the removal of headwear at airports having seen my 24 year old son being told to take his hat off – he is just coming to terms with so much including the loss of his hair. Even when we pointed out he is having chemotherapy (and was on his way to the nearest hospital for more treatment, they still insisted. When I telephoned to question what had happened they tried to say they would not have asked him if they knew the situation; they added he could have left it on if it had been for religious reasons. They agreed they would never ask a woman to remove a wig or a bandana. I feel everyone should either have to remove headwear or should not have to – it is either a security risk or it is not and if it is there should be no exceptions. I believe that the scanner is as likely to pick up a problem under a thin woollen hat as it would under several layers of clothing. Goodness knows how I would be feeling if he had been in pain and had been told to lift his arms – I would have probably taken him home and passed the problem onto his doctors to sort rather than face it!

    1. Elaine, There does seem to be a lot of discrepancy doesn’t there? It would be just horrible if a person had to remove a wig. Going through TSA is stressful for everyone, but the added stress for an ill person or a cancer survivor can be even worse. Thank you for reading and commenting. My best to you and your son too.

      1. Thank you for your reply, just one person understanding where I am coming from makes such a difference. We actually live in Scotland – Shetland Isles – security should in my view be similar across the world. My best wishes to you too.

        1. Elaine, I do understand and I think you’re right about security. It seems things should be more uniform across the globe. My best to you as well.

      1. Nancy, I was so glad to find your website as I have lymphoma in the left side of my neck, have had 3 chemo treatments and start radiation therapy this week. I have lost all of my hair and wear a wig, chemotherapy sleep cap with a scarf or a fedora and scarf. In reading all the remarks it has helped me to be ready for anything that may come my way during my flights in February. Certainly do not expect to have any hair in 2 months time. Although I am wondering about my passport picture tomorrow whether to go with nothing or put on a wig, but am hoping the photographer with have some insight. I hope all is well with you and thank you for sharing with all of us.

        1. Suzy, I am glad you found my site too. I hope you find some useful information here. Good luck with your upcoming travel and of course, with the rest of your treatment. Keep us posted and thank you for sharing too.

  26. I have travelled multiple times since starting the journey of chemotherapy and having my double mastectomy. I have had TSA agents insist that I take my scarf off my bald head almost every time. Each time I declined and requested a supervisor be called. I asked them if they made men take off their toupees? Not a single time did they say “yes”. Mostly, they would look at me with a perplexed look? When the supervisors came, NEVER did they make me take it off. In fact, they apologized and said that public embarrassment was not necessary. I went through the scanner…no “problems” were noted. Several times they “patted” my head! When I returned home after the mastectomy and still had my chest bandaged, they asked to do a “chest pat down”. I told them “no”. You do not have to agree to this. I explained I just had surgery, and could not raise my arms either. They used a hand held scanner. I think that often it is a combination of laziness and ignorance, causing them to seem so callous. A course in compassion would go a long ways!

    1. Gail, I agree about that course in compassion, but I don’t think it’ll be happening. I am familiar with that perplexed look you described. Air travel is so stressful these days anyway, but add cancer stuff into the mix and it can be down right unpleasant. You’re right, it’s important for all of us to speak up when we are made to feel uncomfortable for any reason. Thank you for sharing.

  27. Hey Nancy i always feel that most of these security search do not exactly know what they are looking for when it comes to security its a matter of consulting with their colleagues first. In short am saying it might be their first time seeing the ” lymphedema sleeve”. At least u were patient, myself i don’t think i would?

  28. I recently had a Pat Down (rub down), and they went higher than the top of my thighs. I felt so intruded. I shared this with a friend, and she told me about a friend of hers who was going through breast cancer treatment. (not sure if she had a mastectomy). She did not want the pat down on her chest (still had drains in, and lots of bandages, and she was sore). So, they took her for a strip search.

    Apparently this poor woman was in tears, humiliated beyond belief. The TSA agent apologized (well, thanks for that). This woman will not fly now and she still is traumatized by it.

    I’m reading the posts here from those with cancer, and cancer survivors. I am touched, and so sorry that flying brings extra stress into your lives. I HATE going through security now. But sometimes I don’t have a choice but to fly, so I have to deal with it.

    1. Janet, I hate flying for a lot of reasons these days… Luckily, I don’t have to travel by air too often. Thank you for reading and sharing. Sorry you had a bad experience going through TSA too.

  29. I will be flying for the first time since chemo/radiation this October and will have my port, prosthetic and extremely short hair- hoping my bald spot fills in by then . I came across this blog when wondering about the nightmare that is TSA. I found it and all the comments quite helpful. I do have a port card and will get a doctor’s note (why do I feel like I’m in grade school) I will choose the pat down because the prosthetic boob will no doubt raise a flag. I’m still debating on whether or not to wear the boob as opposed to putting it in my carry on. If TSA gets their jollies feeling up and humiliating cancer patients so be it. That speaks more to that individuals’ character. Not looking forward to it, but this trip is on my bucket list.

  30. This is frustrating. My mother has had all these issues. With prosthesis? Pat-down. Without prosthesis? Pat-down. Remove her sleeve. And also no consistency across airports.

    You’d think the cancer support groups would raise a ruckus about this and put an end to it. How hard can it be to program these machines to recognize a chest where a breast USED to be?

    1. Scott, I know, right? I finally started putting my sleeve on after getting through TSA. The last time I flew, I still got the pat down though. Ugh. Yes, frustrating.

  31. While I don’t have a problem with lymphedema (yet) I do wear a prosthetic breast and during one visit to my local shop the owner gave me a generic letter from the manufacturer (Amoena) for just this reason, indicating that I was wearing one. The intent is if you are chosen the scanner will show a big whole and create questions. I have flown a number of times within Canada as well as Europe (tho not into the US) with no problem. Hopefully if I do get selected for the scanner the letter will suffice in explanation. But I think I’m ballsy enough to whip the gelatinous boob out and in a loud voice say ‘make sure you stay on top of your mammograms, ladies’
    Also, I travelled soon after chemo ended (18 months ago) wearing the wig. I sweated buckets going through security but had resolved myself to proudly taking off the wig and stating again, in a loud voice ‘make sure you stay on top of your mammograms, ladies’.
    Having comments in my back pocket helped if I thought I would encounter a tough situation. This one has given me courage a number of times throughout this journey.

    1. Cindy, I like your strategy. Thank you for sharing it. And btw, I sweated buckets, too, thinking about removing my cap – as I shared about in that post. Thank you for reading and commenting.

  32. I always get the full pat-down because of my lymphedema sleeve. They usually pat my entire upper body. Sometimes they do the entire body.

  33. I always get full screening. I have my lymphedema sleeve and glove in my purse, as well as my bra and prosthetic. I try and wear a loose shirt, over a turtleneck or long sleeved T-shirt, but have been asked to remove the shirt – not even a hoodie.
    It seems hospitals and airports have a thing in common – the first thing you lose is your dignity.

  34. Hi Nancy. I just flew with my left arm bandaged for my lymphodemia including cotton wrapping and ace bandaging that extend to the tips of my fingers (Metastatic in remission 6 months.) Now I’m swearing to never fly again! What a major embarrassment to me, the TSA staff and my fellow passengers. The clueless TSA agent couldn’t have been older than 18, but she was certain I had something wrapped up underneath my three inches of bandage. She squeezed my arm to the point where it hurt and when I complained, she told me I had to unwrap it. When I refused, she reached out to start the process herself and I started to yell loudly and attract attention. Her supervisor told me I must unwrap it and after again explaining the reasons why I wouldn’t be doing that, I asked to speak with the team lead. Once I explained, yet again, to the lead he turned to the two standing over me and suggested they return to their work stations. He apologized immediately, inquired about my flight departure and called for a trolley to take me to my gate. Throughout the situation, I worked really hard on keeping myself under control and not letting the situation get the better of me but I’d never say that was easy. While it has never been easy to deal with the cancer itself, it’s most difficult to deal with the fact that medicare will not cover the cost of a lymphodemia sleeve (I have long arms & need a custom daytime sleeve). I’ve been seeing a physical therapist who is trained in lymphedema and she’s shown me how to control my disease and sometimes wrapping my entire arm in six ace bandage wraps is the best prescription. I also try and keep a smile on my lips when confronted by well-meaning but clueless folks who shown wild concern for a complete stranger! People are sure strange, right? -#Joyfulgratefulcompassionateauthentic

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