Thanks for flagging this up, Jan
I've always played safe and kept my hands away from everyone except trained lymphoedema therapists.
Without wishing to nit-pick too much, I would say that the 'cause' of lymphoedema following breast cancer treatment is well known; a compromised lymphatic system. What we have here is an external event that could possibly have been a trigger - 'the last straw' for the lymphatic camel's back.
The nurse team are right when they say that there is sadly 'little good quality scientific evidence' available to guide them in their recommendations - it's a reflection of lymphoedema's low status within the wider medical profession.
From personal experience, I would also agree that massage to other parts unaffected by surgery, radiation or lymphoedema is fine. I had terrible shoulder and neck problems following radiotherapy four years ago and got a great deal of relief from having these areas treated.
HI again forum members
This is what our nurse team have said:
'We are sorry to hear that you have developed lymphoedma. It can be difficult to establish the cause of lymphoedma following breast cancer treatment, and unfortunately we have very little good quality scientific evidence available to guide us when we make recommendations about how to try to avoid developing this condition. Many recommendations made by specialists are really made from common sense for this reason.
It is therefore difficult to conclude whether or not a pampering hand massage may have an effect on developing lymphoedma, although this is probably unlikely. However we do recommend avoiding deep tissue massage to your arm and hand on the side where you have had surgery to the lymph glands, and to tell your therapist about your breast cancer history.
Having a massage by a qualified therapist to the other areas of your body can be both relaxing and beneficial for well being, and should not be detrimental to your health as long as the therapist has an understanding of your medical history.
If anyone would like to read more about reducing the risk of lymphoedema, we have a factsheet about this which you can read by clicking on the following link:
For those wanting information about living with lymphoedema, and how it may be treated, we include another link below to our booklet on this topic:
We do have a pamphlet on complementary therapies, including massage, (on page 20)
Jan,sorry to hear this.I am booked for a shoulder/back massage this weekend and I am now worried about it.
Ann, any advice would be welcome.
I am sorry to hear you are having this trouble. I have asked one of our nurses for some advice on massage and will put it here as soon as I get it.
With my combo of lymphoedema & bone mets, I haven't dared have any back/arm/hand/head massage since my mets dx -- really miss it, but agree it's not worth taking that risk.
I just want to make you all aware of my experience with hand massage.
I had a beautiful hand massage at a pamper day and within two hours of having it I had developed lymphoedema!!!
Just something else to beware of, but certainly not worth taking the risk.