Lymphoedema and aroma therapy

[ameliapond]

Hi just want to have a moan. . . My lymphoedema nurse advised against the use of lavender to massage on skin as this and some other aromas encourage cancer cells to grow. I have looked this up and can only find positive reviews on this therapy. I will continue with my aromatherapy it has always soothed and comforted me, I use it correctly in a carrier oil to. This was very misleading information to give by a health professional and who claimed to be a aromatherapist herself ! All oils state the safety precautions for their use .

I am not sure I want to go back there again.

Think I stick with the LSN !

[Lynora]

If you are used to using a base oil with added lavender, then I can't see the reasoning behind discontinuing use. I would be very interested to see the research that says that use of oils can encourage cancer cells to grow!! I do know that people should be careful around neat (100%) oils and strong perfumes, as the lymphatics can absorb some larger perfume 'molecules', and if the lymphatics are compromised by surgery or radiotherapy, could encapsulate unknown molecules, as it is designed to do.

[Jenny193]

Hi Ameliapond,

I don't have any faith in my local Lymphoedema nurses - they just want to prescribe compression garments and only see me twice a year. One nurse told me that keeping my arm raised wouldn't help, but I find that my arm swells if I don't. Another nurse wouldn't offer MLD because she said my arm wasn't swollen enough!

It took 2 1/2 years of pleading (sometimes in tears) before I was reluctantly measured for bespoke fitted sleeves that don't cause pressure sores. These are better than nothing, but not by much (my arm swells if I don't keep it almost level with my shoulder, whether I'm wearing the sleeve or not). At least I'm not in constant pain with the bespoke sleeves.

My Lymphoedema flared up 7 years after my mastectomy, but I can't get anyone to find out why - there was no infection in the arm (which is the only cause of Lymphoedema that I was ever warned about).

Keep using the Lavender oil, if you find it soothing!

[ameliapond in reply to Jenny193]

I am sorry to hear about your trouble with lymphoedema nurse and your arm . I think this LSN site is really helpful. My lymphoedema started about 5 months after masectomy, it just swelled, no infection, my sleeve never changed it. This was 7 year's ago. I started seeing a nurse because I heard via the Web that sleeves help prevent infections so I started seeing the nurse again (a different lady ).I also started to get skin problems on my hand . I thankfully don't have pain. I was told MLD wasn't proven to work we shall see!

All the best to you.

[Jenny193]

I did have MLD finally, from a different nurse and it got rid of a swelling on my torso that a Breast Care Doctor told me was unusual muscle growth!

Do they know anything at all?

I personally think that any lymph drainage helps to some extent, whatever they tell you.

Good luck

[howdynina]

MLD definitely works, using it along side the other components of CDT. Lavender oil --- I've known it to have many healing properties, and I apply it directly to cuts, etc, but it's also drying to the skin. On an area with Lymphedema one wants to keep it well moisturized. I'm not an aroma therapist, so no specific recommendations.

[Hidden]

I have also had negative experiences with my local NHS lymphoedema nurse , I had been attending the clinic for 12 months , been perscribed compression garments that did not fit , and my leg increased in volume by 24 % as a result. I was not offered MLD and bandages etc although the clinics website states this is available. When I complained to my nurse that the compression garments perscribed by her did not fit , she replied it was too bad and I would have to wait 6 months until my next fitting to rectify this! I was so angry that haven't been back since .I went to private therapist for 3 weeks MLD and bandages ,and then another therapist for 3 weeks MLD hivamat and bandages . My leg is much reduced and looks normal, although still slightly bigger than the other , also have compression stocking that fits and is very comfortable , and a leg and boot set for night so I don't have to self bandage regularly . I also have MLD withHivamat 2 times a month.

Going back to my experience with the NHS nurse , I will be attending my next appointment with her , and at this I will raise my complaint ,I.e two sets of compression garments not fitting , and her response that I would have to wait for my next fitting in 6 months .If I am not satisfied with her response I will follow the complaints process for the clinic .

So...in a long winded way I am suggesting that we should not turn away from the NHS clinics when we receive incorrect advise or poor outcomes , as this will not improve things for patients. Please go back, challenge the nurse on this advice, on what evidence is she basing this etc ? If you are not happy with her response raise a complaint in line with the clinics policy . This may seem extreme , but if the healthcare professional is giving incorrect advice there may be a training issue at the clinic that needs addressing ?

Good luck ,