I watched the Haven video link this morning and the exercise programme is great. I'm going to do those every day now. I was never shown how to do the exercises at my hospital and seeing someone doing them and talking you through is great. Also more in depth than the ones I've been given in leaflets.
Adi Just to add to the previous suggestions there is an exercise leaflet and DVD available free on the BCC web site.These are for post BC surgery. I've found them excellent Jackiexx
I was given a list of the exercises to do the day after I had my lymph nodes out. The hospital I was in sent a physio to see the BC patients.
Cherub - I'm am pleased that has worked for you. Sadly, it didn't for me even though I have religiously done my exercises twice a day. I did though have full axillary clearance and had seromas post op which increases risk. I would still definitely recommend them though.
Adi - you get a leaflet with exercises from the Lymphoedema Support Network. I was given that one by my lymphodema nurse. It's a small charity so be prepared that you may get the answerphone when you ring.
Another option is to look at the video clip on The Haven website which demonstrates exercises. It's at the bottom of the page:
Hope that helps
good wishes to all, Elinda x
Morning all, thanks for all the responses. I was never told about the 2lb rule so glad you did! Although I have tried to be sensible, but do sometimes forget. Where can I obtain a proper list of all the excercises suitable to avoid this complication - anyone have one please? Hope your day goes well. Adi
I am 4 1/2 years post surgery and have done arm stretches religiously ever since as I believe this helps, as does keeping the arm moisturised. I have also had Herceptin on the affected side and have had blood taken out as there was no other option.
I do upper body exercises at the gym twice a week, but nothing above my head heavier than 12.5 lbs. I also use an arm curl machine at a low weight as I felt I had very little strength on the affected side. My BC nurse's mum has had BC twice with 14 years apart. She told me the first time was early 90s and they didn't give women exercises. Her mum ended up with mobility problems and lymphoedema to the extent she can't even hang up washing.
Morning Linky how was your visit to Bulgaria? Hope your Lymphoedema was kept at bay! I too was in same predicament a few weeks ago as only had my lumpectomy and SNB on 12th Jan and wanted to visit parents abroad. Was in a right state trying to decide whether to do it or not before my chemo on 10th Feb. Anyway I made the positive decision and went on the 3rd Feb - glad I did. I was very scared and just kept doing my exercises constanly on the plane (original excercises shown by physio post op). I was ok but the worry will always be there. I am going to ask my Consultant to refer me I think, as I really do not know enough about it and very concerned as I do wake up every morning with a slight swelling in my wrist. Any experiences to share please?!.... advice appreciated ladies. Don't know about you but making decisions is one of the hardest things at the moment. Just started to feel better yesterday after first chemo and now need to build up to the next one on Wednesday. Not sure if that is bothering me or the fact I have to have a port put in on Tuesday! Anyone else had one put in please and what do you think? Chemo makes me very hungry so now that have had early breakfast can go back to bed for my rest for a short time. Hope you all have a good day. Adi
Thank you all so much. I now feel much more confident about not wearing it. Incidentally, it is not a holiday. My partner is Bulgarian; and we are going over to clear out our apartment in order to sell it. Hopefully, we shouldn't have too much trouble selling as it is not a holiday apartment, but in a normal residential area (with the advantage of a 10 minute walk to the beach). I will leave the selling in the hands of his family!!!
Regarding the 2lb "rule", I was told this by a lymphoedema nurse! That said, I'm afraid I don't take any notice of it when I am cooking otherwise it would be impossible to cook roasts or big casseroles.
I dont have lymphoedema, but had all my lymph nodes removed 4 years ago. I asked about a sleeve, and was given one as a precaution. I have worn it on most flights 2 and 4 hours, but didnt manage to get it on last time, due to time, and i was still fine.
There is no way i could get mine on on my own without the plastic sleeve that comes with it - you put this on first, then the sleeve slides over easily. I think you should have been given one with your sleeve, there are instructions for how to put it on. I would contact your bc nurse again.
Having lost all my nodes in 2009 (15/20 affected so glad they're gone!) I've flown several times both long and short haul and never had any problems. I see a lymphodema nurse 6 monthly and she's happy with how I'm doing so I wouldn't worry too much. Just enjoy your holiday!!
I must admit tho to being scared of the sun and wear long sleeves all the time as the best form of sunburn avoidance...
Hi Linky I too was confused last year about whether I needed a sleeve. I rang the lymphoedema nurse at the breast clinic and she saw me the same day for an advisory chat. I had ANC last May and finished rads in Sept roughly 2 months before 8 hr flight. She measured both arms no lymphoedema but fitted me with 2 sleeves and gauntlets. The latter so I could take it off when I went to the loo.( one was a spare)I put mine on myself at the airport as I was travelling alone. I know my flight was longer and I was not told about having a practice run first. Also take care in the sun I used Factor 50 and kept affected arm out of sun/covered up as much as poss. I also did not know about the 2lbs rule.Have a lovely holiday. Jackie
I flew to Turkey last November (4 hours 25 mins) and was fine. No problems at all. I have had node clearance on one side - 3 nodes affected and a sentinel node biopsy on the other - clear) this was also in the middle of 38 radiotherapies.
Don't worry, enjoy your holiday.
Best Wishes Suze xx
the advice you've had sounds good. i have very mild lymphodema and had three lots of sleeves before I got the one that fitted properly and I don't think it's something you can just sort out in a rush.
The arm exercises are really important as they said on the helpline and try to do some on the plane.
I wasn't told anything post op about not lifting anything heavy. I don't think enough is known about lymphodema by the BCNs perhaps. In an ideal world those of us at risk should see a lymphodema nurse.
Have a great holiday and try not to worry about it all!
Hi I dont have Lymphoedeama and flew 4 1/2 hr flight 3 weeks after chemo I did ask my oncologist about risks and about wearing a sleeve and she said I could if i wanted too but she said if you drink plenty water on flight and keep moving youre arms etc ( as you would with legs to prevent dvt) I should be fine and I was and had no problems . xJulie ( ps I also had all my nodes removed too )
Thank you Elinda
I have spoken to the Helpline.
Yes, the BC nurse did measure me, but then she put it on (using two hands) and took it off again (at my request). The fact that she needed two hands is why I thought I would need help. I haven't gone near the thing since as it hadn't occurred to me (and no one told me) about the need for "rehearsals". The Helpine lady has explained that I need to wear it beforehand to check for comfort/size. ie one hour one day then a two hour period etc, to make sure there are no problems at the top and bottom. This hasn't happened and is unlikely to do now. After discussion with the Helpline lady,therefore, we concluded that, since I do not actually have lymphoedema, the flight is only 3 hours and the fit of the sleeve hasn't had a practice run, I should leave it off or I run the risk of causing other problems if the fit and how we put it on isn't quite right. She also advised me about what exercises/arm movements to do to help.
Up until now, I have been relatively happy with the back-up I have been getting from my BC nurses (they always respond to a phone call within a day or two) but, clearly, there is something I need to flag-up here. I suspect that I wasn't told because I didn't ask, which has been a regular problem throughout. For example, we are told not to carry anything heavy with our nodeless arm. I asked specifically what was "heavy" and told "no more than 2 lbs". Another lady, with whom I have stayed in touch, knew nothing about the 2lbs because she didn't ask!!!
this is a difficult one becuase there's a lot of contradictary information out there.
Just wearing the sleeve did give me problems in the hand with some swelling but I don't think that's necessarily common. I doubt wearing it just for a flight would anyway. I only noticed this after wearing it all day for several days.
From what I've read there is certainly less risk with short haul flights anyway.
If you are going to wear a sleeve then the most important thing is that it's properly fitted. Did the BCN take arm measurements? I'm a bit concerned that can't put it on without help and wonder whether the BCN actually watched you putting this on? Have you actually tried it on at all?
I wouldn't even attempt to put it on at the airport. You would want to do this at home as it's much easier to do before you put your top on. If you do wear it then make sure it has no creases.
I'm not at all sure it's necessary for flights under 5 hours anyway. I really think you should contact the helpline for some expert advice here.
take care, Elinda x
I too have lymphoedema in my right arm and hand, albeit not too bad, I found wearing the sleeve makes my hand worse and the separate glove does absolutely nothing. On 4 hour flights I have done both, with and without, and to be quite honest I haven't noticed a difference. But maybe for total reassurance wear one and see how it goes, but as Liz says don't worry too much about it, just have a great trip.
Thank you LIz. The fact that you have lymphoedema and have flown without a sleeve is reassuring. Everything I have read refers to flights of more than 6 hours. I forgot to add that the sleeve was offered when we thought I might have lymphoedema and partly because I was worrying (perhaps more than necessary but like you do). BC nurse has told me that I do not need to wear it for the second one hour flight so clearly there is a "time" risk involved but what is it?
I do have lymphoedema in my arm so am in a slightly different position to you. I have a sleeve which doesn't have a hand bit and have to admit I'm bad about wearing it. My swelling is in my upper arm, shoulder and trunk under the arm.
I have worn the sleeve when flying to Mallorca/Rome/Paris just to be on the safe side. Having said that, I have also flown to Rome and Paris recently and forgotten to put it on and been absolutely fine. The flights have been 3 hrs at most. I take it off as soon as I get to the hotel. My mum also had bc 8+yrs ago and developed lymphoedema and we have flown a few times together since then and she has worn the same type of sleeve as me and again had no problems.
I would say wear it if you remember but don't panic unduly if you forget. Have a good trip!!
Hi there linky
I'm sure others will be along soon to offer advice, but you might find that giving the Helpline a call helps. They should be able to provide some information on the risks for you and help you come to a decision regarding the flight.
The number is 0808 800 6000.
I should be very grateful for some advice. I am "at risk" of lymphoedema due to the removal of all of my nodes (incidentally, of which only one had cancer!)
I have been reading the various threads about flying and researching the internet; but there seems to be very little about short haul flights and those who are simply "at risk".
Last year, I referred myself to the Lymphoedema Clinic because I thought I had a swelling under my arm. After three visits, I have been discharged with the conclusion that I do not have lymphoedema - the small bump in the armpit being due to two scars causing a bump in between (if you get what I mean).
Next week, I am flying to Bulgaria - 3 hours 5 minutes going and 3 and a half coming back with BA. With an overnight stop in Sofia followed by a one hour internal flight the next day.
Do I need to where a compression sleeve. I am worried about the best thing to do here.
My BC nurse has given me a sleeve to wear as a precaution. However, it does not have a glove; and the threads indicate that if you only wear a sleeve it is more likely to cause a problem for the hand!!! Nor was I told (as I have read in the threads) to wear the damn thing beforehand as a rehearsal to get acclimatised to it. Nor was I told anything about putting it on a couple of hours before the flight and keeping it on after. I had planned to put it on at the airport (with assistance from my partner)!!!
Now I am wondering what to do. On balance, the indicators seem to me to be not to wear it; but I would be grateful for comments, particularly from those who are simply "at risk" and have taken short haul flights.