Thanks S, x
Well,
I went to see my surgeon yesterday who said I do have lymphodema in my breast but when I asked about referral to a lymphodema clinic he said that he didn’t think it was necessary and there was nothing they could do as they can’t do manual drainage there as they can with arms etc and that it should settle with time.
Why is it Doctors take so little account of lymphodema? Each time I have mentioned it (to BCN and now to Surgeon) they say, “it’ll go/settle”, “you don’t need to see anyone”.
The surgeon said that I should massage my breast with some vitamin E cream and that was that!
I can’t remember but isn’t there something else they can do instead of massage - a new treatment? Does it work with breast lymphodema?
Why didn’t he even think it meritorious to refer me to a lymphoema clinic so they could show me how to massage?
Should I phone up either the BCN or try and find the lymphodema clinic myself and get a referral or just shut up and put up?
O, x
I have lymphoedema in my arm not breast but I would think if it was me I would want to see someone at lymphoedema clinic. I’m not sure what the treatment would be but surely they could advise something either massage or maybe some type of compression garment.
At least if you speak to someone specialising in lymphoedema it would put your mind at rest. I don’t think I would put up and shut up, what if it gets worse and then you found out you could have done something about it. Speak to your BCN and insist on a referral.
Take care x
Hello Ostrich
Your surgeon is wrong. They can indeed do MLD for lymphoedema of the breast - I’ve had a course of this.
I have to say it didn’t do very much to help and I’ve still got the lymphoedema but it may help you so you should definitely insist on a referral.
Best wishes
Anthi x
Thanks Ladies, think I will be ringing my BCN later, xx
Hi Ostrich
Grrrrr! Your surgeon, does he belong to the Flat Earth Society too?
Your lymphoedema might settle on its own, it might not. But he’s definitely NOT the person to decide whether you need help or not - it’s not his field and he should be humble enough to admit that and make sure you referred to the right person, ie lymphoedema/nurse/physio/clinic. There are compression garments for breast trunk lymphoedema and, as Anthi says you could have MLD. or kinesio taping, too.
I would push for a referral by another means; he’s onviously going to be no help at all.
X
S
Hi S,
Having had a toe in the world of lymphodema I can certainly agree with your thoughts and comments on this site about how bleeding ignorant most medical professionals seem to be about it or how little they care! I now have to decide which BCN to push as the one who works with my surgeon was there at the time and I don’t think will overrule him and the one who works at my local hospital where I have chemo said the same as him when I mentioned it to her a few weeks ago!
Am off to rehab (physio etc not drugs LOL) tomorrow so when I get back and go to my local hospital to see Onc on the 19th pre FEC I will ask HIM and see if he will help! (better keep my fingers crossed!)
x
Hi Ostrich
If all else fails, you could try your GP.
Or, if you don’t mind spending some money, a private lymphoedema therapist might be able to help
I really feel for you and hope you get a positive repsonse from someone soon.
X
S
Hi,
Ostrich - what a pain they’re all being. You really shouldn’t have to put up with all this as well as the cancer…
I’ve just seen this thread. I have an area of mild lymphoedema on my chest wall where my breast has been removed and when it’s a bit more swollen, I have the kinesio taping go from there ( the main bit of taping is from my shoulder/collarbone area down my back and on my trunk just under my arm. It works a treat but my bcn got me referred to physio quickly for a stiff shoulder problem after surgery and then the physio picked it up from there. I have to have the taping every week to 10 days and will get it as long as it helps. Did get referred to the lymph nurse from physio to double check but she’s happy for physio to keep doing it although she showed me some gentle massage techniques to take the fluid across the chest to the other side and that seems to help a bit. Google British Lymphoedema Society for more info I think (haven’t done that myself but it may be worth a look)
My surgeon and onc are also impressed with the taping so I feel I’m lucky with the support I’m getting and it’s not too bad anyway as I don’t need to wear a sleeve. I’m 12 months after surgery but the lymphoedema appeared within 3 months by the way.
Good luck, Liz x
Hi everyone
I had my op 13 months ago (WLE) but only a few weeks ago I noticed my skin becoming lumpy and orang peely on the bottom half of my breast, saw the registrar yesterday, she is arranging a mammogram to be sure but thinks it is lymphodema in the breast. What a bummer! Providing the mammo comes back clear I will be asking for a referral to the Lymphodema clinic just so I can do the right massage. In the meantime Aloe Vera Gel has really helped the dry/sore patches
So sorry that so many seem to suffer this!
Louise x
bump for Sarah66