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My Lymphedema Resource Round-Up

As we wrap up another Lymphedema Awareness month, in this post, I’m sharing some helpful resources about lymphedema, so they are more easily accessible, all in one place. In other words, I’m organizing. Yikes! (As some of you know, organization is not my strong suit. Trust me, it’s not.) I hope you, my dear readers, will share your favorite LE resources as well.

If you’d like to download my list of references, click here.

I’ll start with a list of the wonderful guest posts some dear readers have generously written. They remain timeless and so very helpful. Thanks again, ladies.

Living with Lymphedema by Suzzann Cummings

Lymphedema, Breast Cancer’s Booby Prize by Carrie Ellman-Larsen

Lymphedema, It’s Not Just a Bit of Swelling! by Helen Bonynge

Musings from a Lymphedema Lady by Jan Hasak

Why I Became a Lymphedema Advocate by Rebecca Sharp

Next, we’ll move on to posts about lymphedema by yours truly. Sift and read. Or read and sift.

Lymphedema, What’s a Breast Cancer Patient’s Real Risk?

Lymphedema, Seven Tips to Help Sort Through the Confusion

Getting Through TSA as a Cancer Survivor

Lymphedema, Another Reason for Self-Advocacy

Now for some reputable resources for general information gathering about lymphedema. There are more, but these are good places to start.

American Cancer Society

BreastCancer.Org – Lymphedema

Lighthouse Lymphedema Network. Shedding light on lymphedema.

Lymphatic Education & Research Network

Lymphedema People

LymphNotes – Exercise Advice

Mayo Clinic – Lymphedema

National Cancer Institute – Lymphedema

National Lymphedema Network (nln)

Position Paper:  Screening and Measurement for Early Detection of Breast Cancer Related Lymphedema from NLN

Step Up, Speak Out

Too many links? I hear you, but stay with me! Below are are a few great blogs/podcasts to check out.

Lymphedema Blog – Inform yourself and take control

Lymphedema Mavens

Lymphedema Sucks – My journey to find a fix for secondary lymphedema

My Little Bs Have the Big C – A Breast Cancer Blog for Young Women

My Lymph Node Transplant – One woman’s quest for better health…living with lymphedema

Pura Vida. Sometimes. Anecdotes for creating a good life.

The Lymphie Life – stay elevated

If you have lymphedema and maintain a blog about it, if you’ve written a blog post about LE or if you have a resource you love, please share the link in the comments below, or send me an email and I will add it. Thank you!

Lymphedema Products 

Compression Guru

Jobst

JoViPak

Juzo

Lymphedema Products

Lymphedivas

Sleek Sleeves

Sigvaris

Solaris

Solidea Medical

All lists provided above are for informational purposes only and inclusion does not imply or constitute endorsement by Nancy’s Point.

Lastly…

What can a breast cancer patient do to be proactive regarding her/his lymphedema risk?

1.  Get copies of your medical/surgical reports and and learn what they mean.

Ask questions until you’re satisfied with the answers. For example, it’s imperative to know if nodes were removed (and how many) during your surgery. Not newly diagnosed? You can still ask for all reports, and if you have access to an online patient portal, use it.

2.  Ask your doctor(s) about your lymphedema risk.

Don’t settle for the, don’t worry about it ’til it happens, answer/attitude. Discuss what risk-reducing measures seem reasonable for you to take. As always, eating a healthy diet, maintaining a healthy weight and committing to exercise (start slowly and get help, if in doubt) are important things to do (or try to do) to reduce risk. Of course, these things also help with managing LE.

3.  Learn the symptoms of lymphedema.

Some of these symptoms include:  a heavy, tight, or tingling feeling in chest/arm/armpit area; swelling, numbness, pain, change in skin color or a general change in skin condition including rash, redness, itchiness, warmth; loss of flexibility in nearby joints or fever/flu-like symptoms. When in doubt, get checked out.

4.  If you’re recently diagnosed, ask to have your limb measurements taken before treatments such as surgery or radiation begin.

Getting this baseline set of measurements should be part of every breast cancer patient’s preliminary, before-treatment-gets-rolling exam. Ask for it.

What’s something we can all do in the US? 

Support the Lymphedema Treatment Act.

Support the LE Treatment Act

The first step in empowering yourself when dealing with any situation is information gathering, along with finding support. I hope this resource post helps with both.

Because  no one should feel isolated or alone when dealing with lymphedema. No one. 

If you’d like to download my list of references, click here.

Do you have lymphedema and if so, what’s your favorite go-to resource?

Do you have a post you’ve read or written about LE? If so, please share the link with a comment below.

 

My Lymphedema Resource Round-Up!

 

My Lymphedema Resource Round-Up!

 

My Lymphedema Resource Round-Up!
A handy, helpful book

One thought to “My Lymphedema Resource Round-Up”

  1. Extremely useful post. When I underwent breast cancer surgery eons ago, nobody seemed to be talking about lymphedema until a patient had it.

    It’s great that there is a community of people raising a level of awareness of lymphedema and how to best manage it.

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