As we wrap up another Lymphedema Awareness month, 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.)
Feel free to share your favorite LE resources with a comment at the end of this post.
My Lymphedema Resource Round-Up:
Let’s start with a list of the wonderful guest posts written by readers. They remain timeless and so very helpful. Thanks again, ladies.
Lymphedema, never think you dodged a bullet by Linda Catanzaro Boberg
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.
What Does Passage of the Lymphedema Treatment Act Mean for You?
Lymphedema Risk: Are Hot Tubs & Saunas Bad Ideas? (& other questions you might be wondering about)
Why Is Lymphedema Still Such a Mystery?
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.
Academy of Lymphatic Studies: Find a Certified Lymphedema Therapist
Lighthouse Lymphedema Network. Shedding light on lymphedema.
Lymphatic Education & Research Network
National Cancer Institute – Lymphedema
National Lymphedema Network (nln)
Too many links?
I hear you, but stay with me! Below are a few great blogs/podcasts to check out.
Lymphedema Blog – Inform yourself and take control
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
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
Note: 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 until 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.
The first step in empowering yourself when dealing with any situation is information gathering along with finding support. I hope this lymphedema resource round-up helps with both.
Because no one should feel isolated or alone when dealing with lymphedema. No one.
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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.
A handy, helpful book
Beth L. Gainer
Saturday 19th of May 2018
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.