This has been really useful thanks and good to know can be done without touchng the side with lymphoedema! I am thinking about acupuncture to help me with back pain which I am sure is just the result of 2 lat dorsi reconstructions and my back just not coping well without them ... pain round/under shoulder blades, across shoulders, neck, and into my arms which I think is as I tend to tense my shoulders ... i'll let you know if I eventually go for it and how it goes....
Hi,Im going for acupuncture in January for really bad flushes,and also have lymphodema.Oncologist said no needles would be put in my arm.I wouldn't take the risk lymphodema is cr*p.Iv'e never heard of acupuncture helping to prevent recurrance .
love and best wishes mellx
It's your body, your choice, of course. And the odds are that you won't get it....but..... if you do, it's for life and there are no 'cures', only primitive treatments which are little more than damage limitation strategies.
There's no 'moving on' from lymphoedema.
Thank you for your support! I hope all your efforts to avoid the big L pay off - you certainly seem to be doing your utmost and educating quite a few 'health professionals' along the way, too!
I think it's great that we as patients are becoming better informed about lymphoedema - there is certainly much more awareness among bc sufferers than when I was was first diagnosed with it back in the late 90s. It's just such a shame that the medical profession, by and large, has not done the same. But we'll get there!
(BTW, I've just put a post on the lymphoedema board entitled 'pushing for more research'!)
PS Cinderella - it's not the sterility of the needles that's the problem - it's the break in the continuity of the skin that they cause which can allow airborne bacteria to enter.
I won't have you say you are ranting! It is an absolutely vital message you are trying to pass on. If the medics aren't going to take our long term health and well being seriously then we have to do it for ourselves. With any luck, bc is just a temporary health issue, but lymphoedema is a lifetime hassle that I am desperate to avoid!
Keep spreading the good word
Hi Angela and everyone else
Grrrr - these doctors! It's not that taking blood definitely causes lymphoedema, it's all about minimising risk! Who do we believe - a man whose job it is to irradiate cancerous tisse, or a woman who has been trained to deal day in, day out with the permanent physical and pyscho-social damage that lymphoedema can cause?
I've got lymphoedema in both arms, so my feet get used for all sorts of things!
Here's a few tips:
As you've already said, keep your feet as warm as possible. I very often get them to soak my foot in a bucket of warm water for a few minutes beforehand.
Get them to use a smaller cannula than usual - often this is all that is needed.
Stand your ground - be polite, but firm. No-one touches yur bad arm(s). The risks may be small, but they are real. Once you've got lymphoedema, it's for life. It's your body, and if the medical staff are mildly inconvenienced by what you are now aware is a perfectly reasonable precaution, then so be it (buckets and warm water aren't hard to find in a hospital, are they?).
There is a brilliant new lymphoedema website, 'stepup-speakout.org' , which has a section entitled 'What we need Healthcare Providers to know' and there you can run off a printer friendly article about lymphoedema, preventing it and dealing with it. I thoroughly recommend running a copy off and keeping it handy for appointments. Also, you can get lymphoedema alert bracelets (for those at risk of developing lymphoedema as well as those who already have it) from the Lymphoedema Support Network.
Sorry! Ranting again!
I had Bi.mx.
1 node came away with the breast in my left arm, and 4 nodes (1 came away, 3 were taken) from my right arm.
Whilst in hospital I had blood pressure done from my leg and also blood taken from my foot.
Later when visiting Cons radiotherapist on an outpatient appt, he said that there is no proof that taking blood from arms causes lymphodema, however, the Lymphodema Nurse was most insistent that I should not have blood, or blood pressure, taken from my arms, hence I had to have blood taken from my feet again. Needless to say I have cold feet and they hardly got any blood from me, just enough to check the ongoing problem with my thyroid.
(I presume I will just have to wear woolly socks and boots to keep my feet warm in future!!)
Hi, i've had a lot of acupuncture, including on the arm where thelymphs were removed. I find it helps me; and the needles are sterilized. I haven't had any problems from it.
1-0 to the bc nurses, I reckon. I think it was brilliant of them to give you that card and well done too the hospital for taking BP on your leg from Day 1.
BC nurses see a lot more lymphoedema than GPs (my last GP knew NOTHING) and almost certainly know more about it - and the lifelong distress it can cause. I imagine that the fewer nodes you have removed, the lower the risk, but I were you I'd play safe and insist no-one touches your arms - your lymphatic system has been compromised, after all - it can't hurt to err on the side of caution.
does that mean any node removal? I had 3 out on the right, and 4 on the left, and my GP said that just treat my arms as normal, but when I was in hospital they took blood pressure in my leg, and my bc nurse gave me a card saying no injections or blood pressure in arms at all, just conflicting advice - so not sure now?.Any advice please?
Thanks for all your advice. I told the physio that whilst i was happy to have accupuncture not in my bad arm. He is qualified so he should have known better. I have had one session and my shoulder has been really sore since, also shooting pains down my arm so my first might be my last at least with him.
Thanks very much for the good advice about where to find a properly qualified acupuncturist - that's really useful info'.
I've had an an oncologist, NHS physio and bcn as well all tell me it was OK to have needles in my bad arms, by the way! Fortunately, I already knew better.
Just one thing - after node removal you should never again allow blood pressure, injections or blood draws from that arm - the risks remains for life, I'm afraid, as lymphoedema and infection can strike at any time. Once compromised and therefore vulnerable, the lymphatic system stays that way. The peak time for lymphoedema to occur is about three and a half years after treatment.
All the best with your treatment
I am an acupuncturist (and 3 months into my own breast cancer/mastectomy/chemo experience).
Please, if anyone suggests needling the arm on the side of lymph node removal, they are NOT properly qualified and you should avoid them like the plaque, it is contraindicated.
Acupuncture is wonderful for all of the side effects of your treatments and for helping to prevent recurrence of your cancer.
Please chose your acupuncturist from the official site of the British Acupuncture Council : www.acupuncture.org.uk. You can be assured that they will be properly qualified to a very high standard, working to documented high standards of cleanliness and safety, and fully covered by insurance.
You should also make sure that no-one else punctures or puts pressure on that arm for at least 2 years after node removal (eg nurses taking blood pressure, giving injections or innoculations, kittens & puppies playing, manicurists cutting cuticles etc etc).
Good luck all!
Hi, I am having acupuncture at the moment for hot flushes, and the needles go in each ear, its a course of 10, on my third week, so dont know if helping yet.
hi fuzzyface,I had acupuncture for pain after my mastectomy for a few weeks,she NEVER put any in my affected arm,thats not right,find a different acupuncturist,mine was based in a special cancer centre.She was brilliant,and as for the hot flushes she said she could give it me for this too,but i declined as didnt think they were to bad to cope with,but i do know they put the needles in your legs for this,it was painless for me and really helped me at that time.
A couple of our publications called 'Reducing the risk of lymphoedema' and 'Complementary therapies' contain advice about your query, if you wish to read them you can do so via the following links:
If you feel it would help to talk things through with one of our specialist nurses please call our helpline on 0808 800 6000 weekdays 9-5 and Sat 9-2.
Earlier this year I had several acupuncture sessions to help with my excruciating back pain which eventually I found out was BC Secondaries in my lower spine. The acupuncture helped me a lot. There was even a 3 week period where I didn't use any painkillers and managed to have sex !
Now that I think back I am pretty sure that she did put the needles in the arm on the side where I had my lymphectomy. I never had a problem as a result of this. I had 9 lymph nodes removed. In retrospect it is probably not a good idea to be putting the needles in that side, as you definitely do not want lymphoedema to compound your problems. If I had been thinking straight, I also probably would not have let her do this.
I'm with S on this. Give it a wide berth. I get really freaked when they try to take blood/blood pressure from 'that arm'. I know the numbness cant be great but maybe it will come back in time with normal physio. Let us know how you get on.
Regards Elaine xx
Acupuncture in your bad arm is never recommended, due to a heightened risk of infection (caused by your compromised lymphatic system, NOT dirty needles) and of triggering lymphoedema. I would give it a wide berth, if I were you.
Ive been having some numbness in the fingers in my affected hand and pain in that arm, seems to be coming of my spine (not cancer related although they think my ld recon hasn't helped). The physio wants to do accupuncture for this and has offered to treat my hot sweats as well bu this would involve using my bad arm.
Has anyone had accupuncture in their affected arm and if so has it been ok. Any advice gratefully recieved.