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Ask about lymphoedema (closed)

Our volunteer lymphoedema specialist Cheryl is on the community to answer your questions. She'll aim to respond within 2 working days.

SLNB and Lymphoedema

Posted by

I'm due to have a WLE and SLNB soon and am worried about the risk of lymphoedema. I'd really like the SLNB done for peace of mind but my fear of ending up with permanent lymphoedema is putting me off! 

Is there much I can do to reduce my risk?

"I am not afraid of storms, for I am learning how to sail my ship."

~Louisa May Alcott

Cheryl - Macmillan
Posted by

Dear MH20,

Thank you for raising your concerns with us at Macmillan. Please do not let the risk of lymphoedema stop you from having life-saving surgery.  Lymphoedema may be an inconvenience, but it can be managed. Having the SLNB will not only give you peace of mind, it will also guide your consultants as to the best treatment options for you after the surgery.

The risk to lymphoedema of the arm after SLNB is very low - current research says anything between 5% and 8%.  That means you have more than a 90% chance of NOT getting it!  This risk does increase if you then need to have all your lymph nodes removed (ANC) if one or more of the SLNB lymph nodes have cancer cells in them, or if they choose to do radiotherapy in your armpit instead of doing the ANC.  In this instance, your risk to getting lymphoedema is 20% - this means only 1 in 5 may get lymphoedema in their arm. 

I do have to stress that lymphoedema is not a life-threatening condition. I appreciate that the management is a hindrance, but through early detection and treatment, you can keep the swelling to a minimum.  Ultimately, right now, you have more pressing matters that need your attention, and it will do you no favours worrying about something that may never happen to you.

There are however three facts that we alert people to follow to reduce their risk of lymphoedema:

  1. Skin care - keeping your skin healthy and well hydrated by applying a moisturising cream to your skin every day is a great way of stimulating your lymphatics (when you rub it in) and reducing your risk to a skin infection called Cellulitis.  Cellulitis is both a cause and a complication of lymphoedema that we work hard to avoid as best possible.
  2. Keeping active - by moving and doing exercises you are helping both the veins and lymphatics to drain blood and fluid with the muscle pumping action that happens.  When resting, you can elevate your arm if it feels uncomfortable in the first 12 weeks after your surgery, but we encourage you to move your arm as soon as it is comfortable to do so, as it will help build up strength in your arm again.
  3. Maintaining a healthy lifestyle is very important.  The strongest research evidence tells us that people with a high BMI (over 30), are at a much higher risk of getting lymphoedema than people with a healthy BMI (less than 25).  Similarly, putting on a lot of weight can also increase your risk of lymphoedema.

There are a series of short films from both the International Lymphoedema Framework (ILF) and Macmillan that can give you more information about lymphedema, but there is a specific film on Reducing Your Risk of Lymphoedema that may help you even more.

I hope that I have been able to put your mind at ease about your risk of lymphoedema, and that you will go ahead with your surgery knowing what you can do to keep your risks to lymphoedema as low as possible. Follow the advice from your doctors, breast care nurse, and any other health professionals you may meet over the next few weeks and/or months. They all have your best interests at heart and want to do what is right for you.

Wishing you all the very best with your forthcoming surgery.

Kind regards,

Cheryl - Macmillan

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.