Stretching and massage is critical to managing Breast Cancer-Related Lymphedema
Which sounds awesome, until you need to figure out how to fit it all into your daily schedule.
As a breast cancer survivor, sometimes picking yourself up off the floor, much less getting out of bed is tough. But you have to get up and get moving. Those gentle stretches and exercises your breast surgeon and/or certified breast cancer-related lymphedema (BCRL) therapist have prescribed are critical. You HAVE to fit them into your day. I know you may have a family to manage, a full work day to get through, plus cancer treatments, grocery shopping, making breakfast, packing lunches and getting dinner on the table, and finding time to shower, but there is a whole other challenge awaiting you in your aftercare journey.
These stretches, massages and exercises are critical to your lifelong well-being. (Did I get your attention at massage? Yes - massage is part of it!)
I started the stretching exercises as soon as I was cleared by my surgeons to do so. I kept moving between five breast cancer-related surgeries with several walks a day plus barre class. No one really explained the bigger picture of why gentle stretching and exercise were SO immensely important, but now I know. It isn’t because you feel like a blob sitting there recuperating. It’s a powerful way that you can invest in yourself to minimize your risk of developing BCRL.
Examples of the gentle stretches can be found at this Memorial Sloan Kettering Cancer Center (MSKCC) link. Of course you need to follow your medical care provider’s advice with regards to when to start the stretches and exercises, but MSKCC suggests: “A member of your care team will tell you when it’s safe to start doing these exercises. You may be able to start doing some of them earlier than others. Do these exercises 3 times a day until you can move your affected arm the way you did before surgery. After that, keep doing them once a day. This is especially important if you still feel tightness in your chest, shoulder, or under your affected arm. These exercises can help keep scar tissue from forming in your armpit and shoulder. Scar tissue can limit your arm movements later.”
What no one told me until MUCH later is that scar tissue also can inhibit the flow of lymph fluid, causing a buildup and triggering BCRL. This adds a critical urgency to doing the exercises, which is why I’m sharing information with you. Another tip that I learned after being diagnosed with BCRL is to massage your mastectomy and drain hole scars (if you have them) as soon as your surgeon says this is okay to do. MSKCC also has this advice: “You may feel uncomfortable touching your skin in the area of your scar. It’s very important to get comfortable moving your skin over this area. Moving your skin will help your blood flow and soften the tissue. Don’t start doing scar massage until your incision has fully healed and your nurse tells you it’s safe. There should be no open wounds or scabbed areas. The area of the scar may be numb or extra sensitive at first. Both of these feelings are normal after surgery.”
You’ll notice if you read the MSKCC website that it doesn’t mention BCRL, it only talks, at the very end about tips for managing swelling. If only breast cancer care was more up front about BCRL before patients are diagnosed with it. Indeed, that is a huge concern among those who do treat patients with BCRL. The lack of awareness by medical practitioners is one topic this Substack and accompanying website is hoping to address.
A 2021 study found that of those breast surgeons surveyed, few were familiar with expert panel recommendations for patients at risk for BCRL.1
A “survey was sent to 2,975 American Society of Breast Surgeon (ASBrS)members. Questions evaluated members’ clinical practice type, practice duration, and familiarity with BCRL recommendations.” The findings state that “Most respondents were unfamiliar with the ASBrS expert panel recommendations for patients at risk for BCRL and those affected by BCRL. Opportunities exist to increase awareness of best practices...”
This is why I started this Substack and also the accompanying website, Athena Aftercare. I’ll be printing posters for medical care offices to educate breast cancer survivors and medical care providers about BCRL. The lack of education of both communities about this terrible lifelong condition is a critical gap in breast cancer aftercare.