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Joachim Zuther, Lymphedema Specialist. Read more
Lohmann Rauscher

Tactile Medical

More Resources for Breast Cancer and Lymphedema

There are some particularly useful and comprehensive online resources for male and female breast cancer survivors to include those affected by lymphedema. Today I would like to share with you a few:
This is the largest breast cancer discussion board on the web. It has more than 60 discussion forums covering all aspects of breast cancer diagnosis and treatment, including lymphedema. The website hosts a very informative and active lymphedema discussion forum, which can be accessed here:
I would certainly recommend participating in this informative forum.

The also contains professionally written information pages on breast cancer diagnosis and treatment. Those pages dealing with breast cancer itself are excellent, but sadly, the information provides on the subject of lymphedema is incomplete and outdated.

The StepUp-SpeakOut.Org website grew out of the “Lymphedema after Surgery” discussion board at Two years ago, in response to frequent requests for a site where easily accessible and understandable information about post-breast cancer lymphedema and risk reduction would be available, four women who were active on the discussion boards established StepUp-SpeakOut.Org. This resource consolidated the wealth of knowledge shared in various support groups, both on and off-line, and offers guidance for women and men dealing with post-breast cancer lymphedema.

The pages on StepUp-SpeakOut (SUSO) cover all aspects of lymphedema treatment, emergencies, garment reviews, dealing with medical professionals, research updates, axillary web syndrome (AWS), radiation-induced brachial plexopathy (RIBP), etc.
Patient-generated coping tips can be accessed here:

Mourning Has Broken
This is an informative blog page on breast cancer and lymphedema authored by Jan Hasak. Jan is a post-breast cancer lymphedema patient and a 2008 graduate of the National Lymphedema Network’s Lymph Science Advocacy Program, an intensive training program for selected patient-advocates. Jan also maintains a Web site at that has a page called “Lymphormation” dedicated to the latest developments on lymphedema, as well as a Resources page with several references to breast cancer and lymphedema related works. She is author of two books regarding her breast cancer and lymphedema: “Mourning Has Broken: Reflections on Surviving Cancer” and “The Pebble Path: Returning Home from a Forest of Shadows.”

If you know of any resource that you would consider valuable for the lymphedema community, please share in the “Comments” section below – thanks!

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