When most of us think of lymphedema, if we are even aware of it at all, we tend to think of a limb. An arm after breast cancer, a leg after a pelvic or prostate cancer…we don’t usually think about the other places that can be improperly drained of lymphatic fluid after a person’s system is altered to treat cancer. But following my treatment for breast cancer in 2010, it took a while for me to notice any swelling in my arm; the swelling in my chest and armpit began almost immediately.
What is Truncal Edema?
Truncal Edema is a potential presentation of lymphedema that can be painful and affect the way a patient feels about their appearance. Although more often recognized after breast cancer treatment, lymphedema in the trunk can result from lung cancer, melanoma, other upper body cancers and even from a significant infection or a trauma. And treating it is tricky, as we cannot compress the areas in the same way that we compress a limb. But it is possible to treat and to manage once we understand what is occurring and why.
In general, we know that lymphedema occurs when the lymphatic system is faulty or damaged and the regional nodes are unable to keep up with the fluid demands of the quadrant. Regional lymph nodes, those clusters in our armpits and our groin, drain the quadrant of the body where they are located.
If you imagine a line up the middle of the body from the tailbone through the top of the head and another crosswise roughly across the midline from side to side through the belly button, that defines the quarters of the body and the associated node groups – in the armpit, at the panty-line of the groin – that’s where the fluid in the area drains.
When the nodes are compromised by surgery, radiation, some chemotherapies or a combination, or even from a trauma such as a car accident, this fluid builds up in any of the areas that are drained by this regional group of nodes. Here, we are talking about the upper body when we discuss “truncal edema” but as one might imagine, fluid can build up in other uncomfortable places when the groin nodes are affected.
Sometimes, rather than the arm or in addition to it, fluid builds up in the shoulder area, the breast or anterior chest wall or along the rib cage. Sometimes we can see a bit of a “bubble” of fluid in the lower armpit, or along the side, or even at the waistline. Like lymphedema in the arm, this can have no pain or discomfort associated, or can be heavy, numb and tingling, irritated and sensitive to the touch. Many of my patients have told me that their arm edema is something they can manage, but the discomfort in the armpit, across the back or in the chest or breast is just annoying to the point of distraction.
Truncal Edema Treatment
We cannot treat lymphedema in the trunk of the body in exactly the same way as we treat the arm when providing Complete Decongestive Therapy (CDT), or managing the condition independently, but we can modify and take advantage of many of the same approaches.
First of all, appropriate exercise to our tolerance and fitness level is the most important thing we can do to support lymphatic drainage and general wellness.
Knowing what you can do safely and how to progress appropriately is key. When we are experiencing chronic swelling of lymphedema, some of us, frankly most of us, will benefit from a relationship with a Physical Therapist (PT) or Occupational Therapist (OT) or their assistants, hopefully one who is also a Certified Lymphedema Therapist (CLT), to help assess your starting level of fitness and guide you into safe exercise, especially if you are in the process of going through or healing from cancer interventions or a trauma. That way you can take advantage of the many benefits of exercise in a safe manner, without exacerbating the already problematic edema issues. This can help make things better.
Manual Lymphatic Drainage (MLD)
If we are treating an arm, the next part of CDT would be Manual Lymphatic Drainage (MLD), which is the massage-like gentle, rhythmic skin manipulation that helps direct fluid into areas that will drain better.
This is also beneficial to all those other areas we have mentioned. A CLT will have the training and skills to know how to manipulate this fluid in the right directions for proper drainage, and even a massage therapist who is trained in MLD can do much of this if understanding some basic principles of how not to cause further exacerbation. Often, just gentle manipulation of the skin in swollen areas is soothing to the nervous system and stimulating to the lymph system and can alleviate much discomfort.
The next step would be skin care, which is important in all areas of the body and most especially in areas where we know there is damage to the lymphatic system.
We want to avoid infection in these areas at all costs, as our lymphatic system damage means that we are less likely to respond effectively to infection in these areas and may become seriously ill as a result.
Some of the infections which could occur in these areas such as Cellulitis and Erysipelas are prone to spread rapidly and are potentially deadly if left untreated. Keeping our skin clean and moisturized with a low pH moisturizer, something that is not heavily perfumed or drying, is extremely important. Dry skin is more likely to break and allow an entrance for bacteria or fungus. If you have a moisturizer you love and think might be beneficial but do not know the pH measurement, you can purchase test strips and check yourself. The recommended pH of an appropriate moisturizer is 5.5-6.5. This is more acidic than alkaline.
The next step in our truncal edema treatment is compression.
Here is where the treatment becomes trickier than that for the arm. To compress the trunk, the breast, and/or the back with bandages is possible, but not particularly practical. I have done it, and it does not necessarily address all the curves, nooks and bodily crannies that we want to drain.
More helpful are compression bras or camisoles (yes camisoles for men too!), waist cinchers also known as corsets, abdominal compression bands, back braces that are constructed appropriately and all kinds of active wear T-shirts, high-waisted exercise or yoga pants, and on and on. This is where the creativity of therapist and patient together really shine!
Figuring out what will work to reduce that puffy armpit, perhaps a Wear Ease T with an axillary pad, or a pair of soft socks tucked into an Under Armor Tee. A shoulder blade might respond to a micro massage compression tee shirt such as those from Solidea or CzSalus, or to the use of Kinesiology tape such as KinesioTex Gold. This tape, if applied in a particular manner as demonstrated by our clinical advisor Kelly, has the potential to be fun, if one is able to look at it as a creative challenge.
The brand names above are some of the ones that I am familiar with and enthusiastic about, but there are bras and Ts and all kinds of clothing designed for this purpose, and a CLT is likely to be aware of many other brands and options to try, with varying price points and potential for insurance coverage depending on the diagnosis of cause (breast cancer tends to be covered best), and this is another argument for the benefits of that CLT relationship.
Pneumatic Compression Devices
For home care and effective self-treatment, truly one of the best options is a Pneumatic Compression Device (PCD) with a truncal piece such as the AIROS Arm Plus garment or truncal garment.
This PCD option is so helpful as it treats the limb and the armpit, shoulder, back and chest. And it allows the patient to relax and do some of the important deep breathing and resting that will also help move the fluid out of the tissues and back where it belongs.
No therapist will have to be present. The patient can read, watch TV, take advantage of some time to rehydrate, relax. No driving to an appointment, no scheduling challenges aside from one’s own responsibilities. My clients and I often do this at night, before bed, then pull on a comfortable night-time garment such as a custom vest from Pure Night or Tribute and hit the sack for a more restful sleep than before decongesting. Even a soft snug camisole can be safe to sleep in and soothing without costing much. I get mine at Costco; I turn them inside out to keep the seams from being irritating and I buy a size down to get a better snug fit.
Always, if you have swelling and don’t know why, you should have this evaluated and your Primary Care Physician (PCP) is the recommended place to start, although your oncologist or CLT can help here as well.
If you are having additional symptoms such as difficulty breathing or signs of infection, please get help urgently! But if you are living with chronic truncal edema after cancer or trauma, please know that there are techniques that can really improve your wellbeing and we are here to help.
Please feel free to reach out to me directly if you would like some guidance or have any questions about my comments here. It’s my greatest pleasure to offer assistance to those who are trying to have the very best quality of life while living with a chronic condition.
Take a deep breath, relax and have the very best day you can!