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Re: Lymphodema

Hi Rockstarchic


Thanks for posting.


It sounds as if you’re having a difficult time with your arm and hand swelling.


It’s not possible to say what’s causing this onset of pain and worsening of the lymphoedema. As you say, the change in activities may have caused this.


 When the lymph nodes are removed, there’s a risk of developing lymphoedema, which is the disruption of the lymph vessels due to breast cancer treatment. This can happen at any time.


 However, it’s important to contact your hospital team so that they can properly assess you. They may wish to send you for a scan of your arm or a referral for physiotherapy.


You don’t say if your sleeve was prescribed by a lymphoedema specialist or breast care nurse. If this is the case, you could make an appointment with her. It might be that you require re measuring.


 When you’re fitted with the correct sleeve, it’s important to wear it as prescribed, particularly when exercising. Again, you could talk any concerns through with your team.


If you don’t have a lymphoedema specialist, there is a list of Manual Lymphatic Drainage (MLD) registered therapists, in the UK, who can assess your level of arm swelling and make recommendations. These specialists are usually privately funded, but you could discuss a referral via your GP.


Your GP might also be able to suggest some more appropriate pain relief.


There are a number of organisations that provide support. The Lymphoedema Support Network (LSN) have a website with some useful information and a helpline you can call.


At Breast Cancer Now, we provide a variety of services, which may be able to support you now or in the future.


Do call our Helpline if you would like to talk this through or have any further 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.


Best wishes




Breast Cancer Now Nurse


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Re: Lymphodema

Hi Rockstarchic


Thanks for posting your question.


We hope to be able to respond to you tomorrow.


In the meantime our Helpline is open until 4pm today if you would like to talk things through. 


If you do phone our Helpline please let us know that you have asked a question on our forum so that we know your query has been answered. Thank you


With best wishes.




Ask Our Nurses Co-ordinator

Please read the Ask Our Nurses disclaimer .



Hi I wonder if anyone can help me I was diagnosed 2014 mastectomy full node clearance I have had mild lymphodema before but having terrible pain today . It hasn’t been right since I came back off holidays where I did lots of swimming and 6 hour flight home it feels heavy have worn my sleeve all day painkillers haven’t worked only relief is holding my arm above my head I have that sharp weird pain going up and down my arm top of arm down to elbow is bigger than other arm plus my fingers look like pork sausages any advice please I also have  physical job x