Hi Ladies
Can you give me some advice please?
Had node clearance 9 months ago, no sign of lymphoedema. We are now planning a trip to New Zealand and I am wondering if I should wear a sleeve during the flight. My Onc said, not proven to help avoid lymphoedema in the future, yet a physiotherapy friend who treats bc ladies says yes, do wear one!
So I thought I would ask this very knowledeable crowd. What do you think - have you asked this question before - what is your experience?
As I currently have no symptoms, it’s hard to get access to a lymphoedema nurse to just ask this question.
Many thanks!
Nikki x
Hi
Like you I have no symptons of lymphoedema but intend to fly to Brazil at the end of the year. I asked my BCN the very same question and she “thought” that flight socks would suffice but suggested I ask my surgeon. I’m not due to see him until October. Sorry I can’t be of more help.
Everything I have read says that prevention is better than cure so I would try to get a sleeve to prevent trouble. Not sure how to get hold of the right fit if you can’t acccess a LE nurse though. Suggest you make the choice and if it is for a sleeve then go to GP and be clear and definitive requesting what you want. Other things to reduce risk are staying well hydrated, walk around and do exercise during the flight, and no heavy lifting.
Most surgeons don’t seem to believe in LE, well THIER patients never get it anyhow… a bit like nits, and we all know *they* exist…?? GP however gets the longer view, and has an interest in your long-term well-being.
Nikki, any chance you could ask your physio friend how to get through the system and by-pass unhelpful doctors?
I had mild lymphoedema in my hand so was being seen by the lymphoedema clinic and already had a compression glove. As I was flying to South Africa I asked about a sleeve. There was no conclusive evidence either way at the time (2009) but the main nurse at the clinic found an article that suggested a sleeve might be a good idea, so I was fitted with one. I must say, I find it very useful as I also wear it when gardening!
How you access this service without already having a lymphoedema diagnosis, I don’t know. I will need to find out at some time, as I am now discharged, but still need my glove occasionally so will need it replaced eventually.
Hi Nikki,
Have you had a chat to your BCN? At my hospital they had training in fitting sleeves even though they were not lymphoedema specialists. I don’t think they would mind being asked their advice.
E
I would be very interested to see the replies to this as it applies to me too.I fly to USA in October but not due to see oncologist til Nov.Sorry I couldn’t help.
Tracy
x
Hi I flew long haul last Nov just a few months after surgery. As I couldn’t find a definitive answer at the time about sleeves for preventative care I rang the breast clinic where I was treated and luckily there was a Lymph specialist nurse and she gave me an appt. I was fitted with a sleeve for the flight, and she had me back for a follow up 6 months later in May. As I am off again later this year I rang to ask about whether I will always need to use a sleeve and she gave me another appt.
Road Runner I do a lot of gardening too and never thought to use the sleeve for that ( or ironing as that does make my arm achey) LOL
Clearly my experience has been good, in terms of preventative care hope you get some answers soon J
Hi Nikki
I flew twice long haul (once 8 hours and once 14 hours) before I was diagnosed with mild lymphoedema in 2009 in my hand and arm and am quite convinced that had I worn a sleeve on both occasions I wouldn’t have the lymphoedema at all. My advice would be to get the sleeve. Maybe your breast care nurse could help?
Heather.x
presumably if non lymphoedema patient at private hospital and asking BCN there for sleeve for preventative measures, you have to pay for the sleeve but if you get it from GP on prescription then with exempt prescription its free? Anybody know? I fly to oz in December … 24 hours of flying!!!
post deleted
Hi
In June I flew alone from Christchurch NZ to Manchester Uk and back again (25 hours airborne with a few hours in between flights at various stops), I worried about lymphodoema and asked my GP and various Physiotherapists about whether I should wear my sleeve for the journey and got many different answers, but my lymphodoema physiotherapist basically left it to me saying there was a 50/50 chance of getting it.
She and my GP both said that on a long haul the planes fly much higher and the pressure is ? better - sorry can’t explain the technicalities. As I find wearing my sleeve and gauntlet very irritating for any length of time I decided to not wear them for the journey, I took them with me in my hand luggage.
I can happily confirm that I haven’t suffered any ill effects at all. I was advised to keep hydrated, keep moving, especially my arms, not to sit on an aisle seat where I might get bashed by someone or something, to not pull my luggage with my affected arm and be particularly careful when getting cases off the luggage conveyor.
Whatever you decide to do, have a great trip to NZ!
How long did it take for your compression sleeves to arrive?
I gave our local pharmacy my prescription 11 days ago and my sleeves are still not ready to collect.
Anyone else had a problem like this?
Hi Beenie
How did you get a prescription for a sleeve?
Whilst I dont mind paying for a sleeve, I am keen to get one fitted by a lymphoedema expert. Left a message with my GP, but the surgery is always a bit slow…
Thanks
Nikki
Hi Nikki - I agree with trying to get to see a lymphodema nurse via your BCN (if your BCN doesn’t fit sleeves).
What you could do is the ‘ask the nurse’ by e-mail on the BCC site. They have nurses with expert knowledge of lymphodema and if they say you would be advised to have a sleeve, you could print off the e-mail and show your BCN or GP etc.
If you do get a sleeve, the other thing is to try the wearing the sleeve when you get it to make sure it’s okay - say wear it for a day - you want to make sure it fits properly before you get on the aeroplane.
Beenie - my last sleeves took a month to come through but usually they arrive in a week. Elinda x
post deleted
I saw consultant and bcn yesterday and tho I don’t have lumphoedema am flying to oz december. I am being referred to lymphoedema nurse who will assess whether I need sleeve and supply. So thanks guys. Without your knowledge I wouldn’t have known to ask and not sure it wouldve been offered!
Hi
Thought I’d give a quick update. I asked the bcc nurse for an opinion and also asked GP for a referral to the lymphodema specialist nurse in my area.
I got a call from the lymphodema nurses after about 10 days and explained my situation. As I have no symptoms they could not see me and/or fit me with a sleeve which seems reasonable to me. They did point me into the direction of MLD uk.
Through the MLD website I found a local lymphodema therapist who saw me today, measured me and she’ll order me a sleeve (as it’s cheaper when she orders it directly from the supplier). So ‘problem’ resolved!
Nikki x
HI Nikki,
Glad you got it sorted. Better safe than sorry.
Have a wonderful trip.
E