information before mastectomy

hi was wondering just how many of us were informed of how likely we would be to developing this after surgery ? i feel personally that it was glossed over and not fully explained to me just how devastating it would be and what effect it would have on my day to day living . do you think enough info is given to us i was just wanting the op over with and didnt think i would develope it. anyone else have any thoughts on this were you given enough information . how has it affected your daily life and what do you do about it .does the medical terms put you off and would you have done anything differantly . im so fed up at not being able to do things i used to do .i was an aromatherapist but not anymore due to my arm ,personal care is also hard and as for lifting etc forget it ,must say though my good arm has developed some amazing muscle !!lynn

I know I wasn’t given any info on Lymphoedema before my treatment started. Luckily I only have a mild form. I also have now developed carpal tunnell syndrome which apparently is also fairly common. Perhaps they don’t tell you as there are so many other things to take in and just leave it a a surprize as not everyone develops it and it’s one less thing to worry about. Sorry you can’t do your aromatherapy now as it is such a lovely thing to have done. Keep you chin up.
Hugs, Marion

hi marion thanks for the reply ,yes its a real pain not being able to work ,thats the one thing im finding really hard to cope with the lack of money and social life . despite wearing the sleeves i seem to still have balls of fluid in my arm and hand so reallt cant see any differance if i wear them or not .do hope you coping ok .x

I think there’s a lot of things they gloss over before all the treatment. For instance, no-one told me that over two years on my shoulder would still be noticeably stiff if I try to stretch. If I am stretching to reach something I always use my left arm now, as it reaches further than my right. I also still get a pulling sensation if I stretch too far. I still do arm exercises everyday, I swim & run so it’s not that I haven’t tried.

I agree they gloss over things. I too have lymphoedema which developed in December last year 10 months after ops. I have recently joined a gym again despite still having Herceptin. I am finding this quite beneficial for my arm. Which now feels less stiff. I have also take up cross stitch!!! This also seems to help in small doses. A gentle exercise with a fairly blunt needle! But i am about to go to Greece for two weeks so very worried as normally get bitten badly by mosquitos. Have stocked up with insect repellants. I am getting lots of holidays in. Do not know what future holds.


I have lymphoedema on my chest wall and in my right arm. A pharmacist recommended vitamin B (or eating a lot of marmite!) which apparently repels mosquitos/midges etc. You can buy the tablets in Boots and for me there were no side effects. I have no concrete evidence they work but might be worth a try?


Hi Aroma

Re: your original question…

First bc - not a whisper about lymphoedema before or after treatment. Only when I got it (about 3 years later), did anyone dare to speak its name. I was disgusted.

Second bc. Advised in patient leaflet that there was a ‘small risk of slight swelling called lymphoedema’. What a joke. (I already had in it the other arm and knew EXACTLY what it was like!!!) Roadrunner is absolutely right; it’s ‘glossing over’ - and they do it with other long term side effects, too.

How are you these days?



hello .im ok thanks just about coping i think !! tottally fed up with being fobbed off with the lymphodemia seems ive got it hard luck get on with it!! the medical profession want a kick up the backsside re information on side effects of surgery eytc .bad enough reading all the side effects on the arimadex leaflet nevermind knowing that my arm will never get any better . some days i have to tell you i get sso down and fed up of not being me anymore and then i remeber that im still alive ,and just about kicking !! hope your doing well ,been a lovely sunday but today a bit dissapointing as its been dull and wet im off for a few days to my sister who lost her hubby last year so lots of catching up . take care .lynn x

To be fair, I think (from reading others’ posts), that people are given more info’ about it these days. (A**e covering, possibly)

But I still think it’s trivialised. It’s painful, incurable, embarassing, disabling, disfiguring and the complications can be life-threatening.

Early intervention, correct and prompt diagnosis would actually save money and drastically improve the quality of life for so many.

And if you don’t mind my saying so, Lynn, I think you’ve had some of the worst lymphoedema treatment (or lack of) of anyone who has posted here. I often think of you and what a totally raw deal you’ve had. Is there sign of the lymphoedema services in your area improving?

Have you heard of Katie’s Lymphoedema Fund? I hadn’t - there was an article in the Mail the other day. I’ll bump the link in a minute. Or I can e-mail the article to you (you might have to pm with your e-mail address again) if you prefer.

All the best for now, everyone