Thanks for posting.
It sounds as though you are having a very difficult time finding someone to help you manage your lymphoedema effectively.
NICE Guidance (2018) for Early and locally advanced breast cancer diagnosis and management states that people with breast cancer who develop lymphoedema should have rapid access to a specialist lymphoedema service. However, services will and do differ across the country and some people do have problems accessing the right care for ongoing treatment.
It’s not possible for us to say what you should expect specifically as a long-term treatment plan for your personal situation. However guidance that the Lymphoedema support network produced supported by ourselves (as Breast Cancer Care) and other agencies in 2019 sets out what we feel patients should be able to expect from a lymphoedema service and ongoing care.
As specialists in lymphoedema, the Lymphoedema Support Network provide advice and support for anyone with lymphoedema, and are best placed to give you the right information and guidance including on the issue of access to appropriate services. We regularly signpost many of our service users like yourself to them at times like this. You can give them a call Monday to Friday – 09.30 to 16.30 on 020 7351 4480.
You can call our Helpline if you would like to talk this through more or have any other questions. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
The number is 0808 800 6000 (Text relay prefix 18001).
Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.
Breast Cancer Now Nurse
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I know the nurses will be along soon to answer your post which I will read with interest. I have lymphoedema in my hand, arm, breast and back. I am under the lymphoedema clinic but they only address the lymphoedema in my arm by prescribing a compression sleeve. I have asked for other services such as MLD, compression bra even physio but have been declined. The swelling in my breast is not too noticeable but my breast is very hard to the touch and has an "orange peel" look.
Have you tried Yoga? I go to a Yin Yoga class once a week and straight after I can feel softness in my breast and less swelling in my arm.
I've developed breast lymphoedema from radiotherapy and have had a few sessions of MLD over four weeks.
Three weeks on the swelling is back at the level it started from. Getting bras to fit is impossible and compression bra offers no support of shape for the bustier woman.
What should I expect as a long term treatment plan?
Local service says it cannot offer regular MLD and suggested I pay for a private therapist, which isn't affordable. I've also been refused a referral to a more specialist NHS service that has s consultant led rather than nurse led with no reason. I wanted to know all the possible options available to me.
It's having a massive impact in my self esteem and getting clothing to fit is a nightmare.