I was told by the CAB that i wasnt entitled to anything. Do you have to be out of work for 3 months before claiming?
thank you, this is very interesting
disability i was told that people with breast cancer are classed as disabled from diagnosis, which is why we can claim disability living allowance and are covered by disability rights
Hi Suzanne The breast lymphoedema started after I'd finished radiotherapy. I was in a lot of pain, mostly concentrated in the outside of the breast and radiating up to the area under the underarm scar. I was in so much pain (much worse than immediately after the surgery) I rang the breast care nurse who arranged for me to see the surgeon, who referred me for an ultrasound. The radiologist confirmed that there were pockets of fluid trapped between the layers of scar tissue.
The pain is a lot better now but still present, combined with some swelling in the outside of the breast and at the side where your bra goes. which seems to emphasise the really noticeable large "hole" where the lymph nodes were removed, which eveyone I've seen medically since has commented on. I find it hard to get a comfortable bra. It feels very much like when I was breast feeding the kids and the breasts were engorged. I am stll having regular periods and the symptoms get much worse the week before my period.
I know there have been other threads on breast lymphoedema over the past few months, you could try putting it into the search box at the top.
FOR NICKYC Nicky, you said in a previous post you have lymphoedema in the breast. Can you tell me what symptoms you have and how you manage it please. I rang my BC nurse but she said just because I get a bra imprint in my breast doesnt mean its lymphoedema and not to worry...My arm is fine.
advice I too am thinking of going back to the gym as I want to get the weight I've put on since dx and treatment over the last year off before our holiday. I asked the lymphoedema nurse what I should/shouldn't do and her advice was to just try stuff, gently at first, and just build it up if it doesn'y make the swelling worse. Apparently what affects some people others cope with fine. I guess it's just about being sensible and listening to your body.
Thanks for your good wishes and advice Birgit, I can't wait for this trip! Doing Route 66 on a Harley has been my dream since I saw Easy Rider as a teenager, can't believe I'm doing it in my fifties!!
Thanks Cherub I wonder if different Consultants have different views about the gym, to tell you the truth im quite worried about it and at 36 I dont want to end up with a huge arm so im being careful but then again once i have recovered from surgery i want to enjoy myself and feel sexy again, just wish i could take another tablet to stop it happening.
thanks all for advice.
One of the ladies I was in hospital with last year had drainage problems with her arm and was advised by the Consultant we are both under that it would be better for her if she resumed going to the gym. She is also going to Florida for a holiday. The Consultant is all for people getting back to normal. I haven't had any lymphodema problems, but I do get a tightness in the upper arm from time to time which then starts to make my neck and shoulder area ache. I bought an ergonomic pillow to try the other week and this helps.
travel tips Hi Nicky
Like you I was advised to take antibiotics with me, which I did, no problem getting them from the GP. This way you can take them immediately if you should get bitten, scatched etc. and BEFORE any serious inflammation appears. As to flying, this does carry a risk. I think you should be ok as you already wear a sleeve. I took a sleeve with me - just in case of extra swelling - but thankfully did not need it. Yes, do drink plenty of water and do move your arm around a lot, it's the immobility with flying as well as the air pressure that can cause problems apparently.
Be aware of sunburn - so extra suncream and avoid mosquito bites etc. I had a great holiday last year, although I must admit I was very careful and would not go in the water on days that they had jelly fish! I also was careful not to swim in very rocky areas as I did not want to risk falling over and/or sratching myself.
Your holiday sounds brilliant - enjoy!
I had a WLE and axillary node clearance twelve months ago and have since developed lymphoedema which like Birgit mainly affects my upper arm, breast and chest wall although my hand and fingers also swell towards the evening. I wear a compression sleeve and have been taught massage to do simple drainage by my lymphoedema nurse. She also recommended carrying on with the post-surgery exercises. I go to aquarobics too which seems to have helped. The nurse gave me a "Medical Alert" card stating that I have lymphoedema in my left arm and no medical treatment should be administered to that arm. I carry it in my purse although I suppose if I were unconscious it might not be the first thing whoever was treating me might look for but my thought is that if I were in that situation lymphoedema would probably be the least of my worries!
I too try to live life to the full and we have recently booked a three week motorcycle touring holiday to the US. I have read that long haul flights can aggravate lymphoedema and wondered whether anybody has any experience of this? I've been given a sheet with lots of advice, like to drink lots of water during the flight and try to keep the arm moving etc. The nurse also advised me to ask for some antibiotics from my GP just in case I need them. We will also be experiencing dramatic changes in temperature and altitude each day-e.g. going from Las Vegas where the temp is in the nineties high into the Colorado mountains where its twenty degrees cooler, so I am expecting my arm to complain a bit, but this trip is a dream we've had for years and my recent redundancy payment has enabled us to do it financially, so no way am I going to let lymphoedema get in the way!
Best wishes to you all,
Ive just started to do a lot of walking to get my energy levels up so thats great advise for me.
Thank you so much
be careful I too had toal auxillary clearance and was given the standard advice. The problem with lymphoedema is that it can appear years after treatment, some girls got it 12 years after their initial op after heavy lifting. I have sligth lymphoedema, affecting upper arm, under arm and chest wall, don't know what caused it, but it is quite uncomfortable as bras cut into it all the time. I have been taught simple manual lymph massage and it does help when my arm is very swollen- your B?C Nurse will probably be able to advice you.
Obviously, life must go on, and you can't protect yourself against every eventuality. But do keep the basic advice in mind, careful skin treatment, avoid bites/cuts etc. and no heavy lifting. Exercise is good, especially swimming, but if you walk/hike a lot, try not to let your affected arm 'hang down' too long. Put your hand in a pocket or try and lift and/or shake the arm about a bit. I have a note in my diary to warn medial staff in case of emergencies to avoid taking blood etc. on the affected arm.
I know this all sounds quite alarming and you may well never get lymphoedema, but I think it pays to be careful.
just another 'one of those things' I have mild lymphodoema in my hand not long after my op last summer - it started after doing some gardening one day (leaning on the spade to dig something out - I thought I'd be OK cos i was using bodyweight, not muscles, but my hand thought otherwise). It's not bad at all, though I wear a glove most of the time. But I'm not looking forward to summer with a glove, and definitely wouldn't want to have a full sleeve. So we need to take care - lymphodoema is no joke.
Having said that, when even a little thing like bowling or gardening can sometimes set lymphodoema off, you'd have to lead a very sheltered life to remove ALL risk. The advice I got from my breast care nurse was to just be aware of the risks, assess them, and aim for a balance between risk and wanting to live your life!
Go for it girls (carefully!!)!
Wow, you really do have to be careful.
That was a good warning about no going back, I will def try to be careful I know at times there will be the odd occasion when i forget but yours was a good reminder.
I think it's down to luck I had all of my Lymph nodes removed in Oct 2004 and was careful but didn't go too mad. In April last year i noticed my arm was swollen and there it was Lymphoedema. I now wear a sleeve and I can't manage in work because using the computer and doing all of the usual office activities aggravates my arm.
Once you've got it there's no going back so I'm just reminding you all that it can suddenly appear years after treatment
What if ? Hi everyone,
Here's a question for you all relating to this subject. I have had all the lymph nodes removed from the arm on the affected side and like all of you have listened to the advice given by the experts but live in the real world.
I have wondered though.....
What if I were in an accident (God forbid) and I was not able to tell the medics not to use my arm for bloods or to take blood pressure or to access a vein for injection. My brother in law suggested wearing a talisman bracelet !
Have any other ladies worried about this or am I being over cautious ?
Thanks everyone Thank you so much, its good to hear all your story's, ive had more info from you guys then i have my own consultant who forgot to mention these things.
love you all
No no to using right arm.... Morning Tracey
I had 20 lymph nodes removed from my right arm in November 2005. Since then I will only have bloods, herceptin and BP in the left arm and I also take extra care not to cut myself, etc.
I do lift with my right arm but this is usually only a shopping bag - refuse to life anything heavier. Determined not to get lymphoedema!
Not sure about the half disabled bit though.
I too went bowling, am always getting pricked in hand when gardening and cut in the kitchen and lift and move heavy stuff. No problems , i even have blood taken out of arm because no viens available elsewhere - again no problems.
I think they tell you all this to be on the safe side but it doesnt mean you will have problems if you carry on in the'real world'.
Hi Tracey I had 18 lymph nodes removed and was given the standard advice i.e. don't do anything. However I did some research on the internet and I noticed that some American sites are much less dogmatic about this - they suggest that you need to be careful for 6-8 weeks but that you can gradually increase the weight of things you lift after that.
I work in archives and have to lift heavy volumes around, and 4 years on, I've had no problems. I don't carry anything heavy for a long period, I look after any scratches and bites on that arm very carefully, and I won't let them take blood or do BP checks on it, but the lifting hasn't (touch wood) had any ill effects. You will find that you can't carry anything too heavy as you won't have the energy!
I would talk to your BC nurse about this. Mine advised me to be wary of some of the advice given by certain medical staff as they will have you convinced you can't do anything. I've been advised to think of my "mastectomy side" arm as my "at risk" arm. I lost 14 lymph nodes (or nymph lodes, as my significant other keeps calling them) in my right arm. The advice I've had is to avoid excessive weight on that side e.g don't carry heavy shopping bags for periods of time. Take good care of the arm as in be very attentive to cuts, scratches, burns, bites. Clean up straight away any that you do get. Keep the skin on that arm moisturised. My nurse advised me to apply moisturiser with a gentle sweeping motion down the arm as this will help lymph drainage. She advised gentle massage only in my right arm as the lymph system is delicate. As I like weight training, back packing, riding my motorbike, I decided to consult a physio about what exactly I could and could n't do. If I'd listened to some of the advice I've been given, I'd not be doing any of those things and then I would be an invalid. The physio told me that I cannot damage my arm by taking exercise. He did n't suggest any maximum weight and my nurse has n't mentioned this either. The advice of the physio was that exercise will actually help to drain fluid from my arm and prevent build up. It will also help to maintain flexibility and a full range of movement. He has given me some stretching exercises and strength exercises to help with this. All of this is within my personal limits. The weights that I do to train my upper body range from 3-14 kilos. The physio thought these were within acceptable limits for someone of my build(5' 1", 8st 6)) and who has had a mastectomy. When I was having rads, the staff in the rads department were horrified when I said I was going to the gym,doing weights and repetitive exercise. But the programme I have has taken into account the "at risk" arm and taken out things like press ups and planks (where your weight is supported on your shoulders). Besides, how many other things are repetitive like driving your car or typing on the computer. As my nurse said "you have to be able to get on with your life". Yes you have to modify things but it does n't mean you have to be an invalid. That's my view as well as the advice of my nurse, consultant, onc and physio. I've lost enough to breast cancer without losing the things I enjoy as well.
Big arm!! I have the dreaded lymphodema. When all my treatment was finally over I went bowling!! Didnt think for one moment anything would happen, how wrong I was. Three years on and my arm goes up and down. I wear a sleeve all the time now and its a real pain.
All i want to say is becareful girls, think about what you do and ask for help whenever possible.
love Shirl xx
Thanks Lynn ha ha, Yes i was wondering about the real world as well, i have a toddler who likes to be picked up, havent done it yet but im sure when im recovered i will do these things without realising it, i suppose its either that or i sit at home with my arm wrapped in cotton wool, it possibly could happen if i win the lottery but that doesnt happen very often to nice people that have been to hell and back.
In the perfect world.......... Ha, ha..............
This makes me laugh (not about you!).......... I had Mastectomy & nodes in January and all I keep hearing is don't do this and don't do that!
Unfortunately I live in the real world and yesterday had to move 20 x 15kg bags of dog food from my truck to the dog food room, lift bales of hay & straw, get dragged about by horses and dogs, muck out kennels and stables etc...........
I know I shouldn't do these things but who else will if I don't, my hubby works away from home and my life style is what I do! I would be interested to see what my occy health would say if I decided to go back to work as a nurse? It would be interesting?
So I don't know how you class it?
Luv Lynn x
'Reducing the risk of lymphodeoma' factsheet by Breast Cance You may find this factsheet useful in helping you to understand
more about how to reduce your chances of
developing lymphoedema following breast cancer
You can read or download the factsheet via the following
If you have any further questions please don't hesitate to
contact our freephone confidential helpline on 0808 800 6000
for expert advice and information. The helpline is open
Monday to Friday 9am-5pm and Saturday 9am-2pm.
I do hope this is useful to you.
Breast Cancer Care
Lymph nodes - after surgery Hi all
not sure if anyone knows this but will ask anyway.
I have just had several lymph nodes removed and its a few weeks on, in hospital having herceptin and a nurse told me that basically i have to think of the arm with the nodes removed as not there, basically dont really use it and dont lift anything more than 5kg using that arm as it could cause Lymphoedema, is this true and would i be classed as half disabled, especially when im looking for a new job.
thanks and best wishes