Truncal and Breast Lymphedema

Truncal Lymphedema: Risks, Symptoms, and Treatment
by Elizabeth Pennebaker, M.A., M.St., DPhil
Studies have estimated that breast cancer survivors have a 20%-80% chance of ending up with some form of lymphedema, whether it is truncal lymphedema (i.e. lymphedema of the chest, breast and back) or of the arm and/or hand. It is difficult to predict who will get lymphedema and who won’t, but there are some variables that are known to increase the risk. Patients who have had more extensive surgery, more radiation, or greater scarring following diagnostic and treatment procedures are more likely to develop lymphedema than others.
It is crucial to keep in mind that truncal lymphedema can develop at any point – during treatment itself or thirty years later. For more information regarding risks and ways to avoid the onset of lymphedema see the NLN website
Truncal lymphedema can present somewhat differently than lymphedema in the arms and legs, which may make it difficult for therapists or doctors to diagnose. Often pain and tenderness are the first signs, rather than visible swelling (although this may be a symptom too, of course). There may be a sense of fullness in the armpit, back, side and/or breast. Sometimes the affected breast may be larger than it was before breast cancer treatment. Visible indentations from bra straps or seams may be seen on the affected side, but not the other side. Other signs include a thickening of the skin or “pitting” (little pock-mark indentations) on the breast, chest, or back.
The treatment of choice for truncal lymphedema is massage (MLD), followed by the use of compression garments to reduce fluid build-up. It’s important, however, to choose an appropriate compression garment. Many women mistakenly try to use mastectomy or sports bras as compression bras, but these can actually block the drainage of fluid from the torso and make symptoms worse. Moreover, even some compression bras are not appropriate for truncal lymphedema, because they do not provide coverage for all the areas of the torso that can be affected.
In upcoming issues of EW, we’ll explain the importance of compression bras in treating truncal lymphedema, and discuss the features a good compression garment should have. Until then, visit the Bellisse® website
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FAQs: Compression Bras vs. Mastectomy and Sports Bras in the Treatment of Truncal Lymphedema
Q: What’s the difference between a compression bra and a mastectomy bra?
A: Mastectomy bras are designed to hold prostheses securely in place. Some compression bras, including Bellisse’s Compressure Comfort® Bra, are also designed to hold prostheses, but they do much more as well. Compression bras provide compression for patients with post-surgical swelling or truncal lymphedema, which is often the painful retention of lymphatic fluid in the torso (a common side effect of breast cancer treatments). Mastectomy bras are simply not designed to provide compression in all the areas that can be affected by truncal lymphedema, such as high in the armpit and/or on the back. In fact, depending on their design, some mastectomy bras may be contraindicated for lymphedema, because they do not provide therapeutically useful compression, may cut into tender, swollen tissue, and may even block the drainage of lymphatic fluid.
Q: Can’t one get compression from a regular sports bra?
A: Regular “compression” sports bras are designed to flatten the breasts against the chest wall in order to help minimize their movement during exercise. There is no consideration of lymphatic flow or surgical scarring. For women with lymphedema, this kind of compression is inadequate, and may sometimes even exacerbate the problem. (Also, sports bras often do not come in large sizes, so many patients will not be able to use them.)
Q: What features should one look for in a compression bra?
A: A good compression garment will provide compression in all the areas of the torso where lymphatic fluid can build up, including the back and under the arms. If a compression bra does not cover these areas, it may not be appropriate for lymphedema. Compression bras should also avoid chafing the skin and, most importantly, allow drainage of lymphatic fluid from the torso. For this reason, it’s important to avoid any compression garments that have underwires, non-flat seams across the cups, or narrow straps. Finally, look for a compression bra with a front zipper, so that it will be easy for patients with a restricted range of motion to\n use it.
To find out more about the features that are important for successful compression, visit Bellisse Compression Bras
Compression Garments in the Treatment of Truncal Lymphedema: A Conversation with Lymphedema Therapist Lesli Bell, PT-CLT/LANA Q: Why is the use of compression garments so important in the treatment of truncal lymphedema? LESLI —Compression is a standard part of the treatment of lymphedema, and helps to keep lymphatic fluid from building up in the affected quadrant. The fluid build-up in the chest can often be very painful, so a well-designed compression bra can make an enormous difference in patients’ quality of life. (However, a badly designed one can\n make things worse, so choose carefully -- see ",1]Q: What features should one look for in a compression bra?
A good compression garment will provide compression in all the areas of the torso where lymphatic fluid can build up, including the back and under the arms. If a compression bra does not cover these areas, it may not be appropriate for lymphedema. Compression bras should also avoid chafing the skin and, most importantly, allow drainage of lymphatic fluid from the torso. For this reason, it’s important to avoid any compression garments that have underwires, non-flat seams across the cups, or narrow straps. Finally, look for a compression bra with a front zipper, so that it will be easy for patients with a restricted range of motion to use it. To find out more about the features that are important for successful compression, visit Bellisse
Compression Garments in the Treatment of Truncal Lymphedema:
A Conversation with Lymphedema Therapist Lesli Bell, PT-CLT/LANAA:
Q: Why is the use of compression garments so important in the treatment of truncal lymphedema?
LESLI —Compression is a standard part of the treatment of lymphedema, and helps to keep lymphatic fluid from building up in the affected quadrant. The fluid build-up in the chest can often be very painful, so a well-designed compression bra can make an enormous difference in patients’ quality of life. (However, a badly designed one can make things worse, so choose carefully -- see FAQS
Q: What has been your patients’ response to treatment with massage and compression garments?
LESLI —In my experience, once patients get treated with massage or manual lymphatic drainage (MLD), they feel much better. However, it used to be that the only way to keep swelling down after treatment was with bandages – which were hard to put on, uncomfortable, and looked terrible under clothing. Now that a good compression bra is available, my patients have a vastly improved quality of life. Some women I’ve seen couldn’t leave the house, couldn’t be touched, could hardly get through the day. After they were treated with massage (MLD) and fitted with the Compressure Comfort® Bra, they stopped suffering and got their lives back again.
Q: When should patients wear compression bras?
LESLI —From the first hint of any symptoms of truncal lymphedema onwards. Symptoms include pain and tenderness, a sense of fullness in the armpit, back, side, or breast, visible indentations or “pitting” in the skin, or one breast being larger than the other or different than it was before surgery. (You should consult your health care provider immediately if you see any of these symptoms.) Some therapists also recommend that the Compressure Comfort® Bra be worn preventatively. For instance, some patients choose to wear it during exercise, or while flying, when changes in cabin pressure may make the development of truncal lymphedema more likely. In addition, many patients find that compression bras are useful for supporting swollen tissues, protecting skin, and holding dressings in place during recovery from surgery or radiation treatments. Compression bras are even being used for women who have had open-heart surgery, or who have diabetes or osteoporosis. Now that most insurance companies cover compression bras, we are finding that they have a wide range of applications.
Bellisse
How Much Compression Is Needed to Effectively Manage Truncal Lymphedema?
by Lesli Bell, PT, CLT-LANA
There have been no scientific studies about the appropriate amount of compression for truncal lymphedema, because no measurement system has been developed to assess the amount and quality of swelling in the trunk. All we can do right now is rely on practitioners’ ability to palpate and\n assess swelling and treatment needs for the trunk.
Treatment considerations for truncal lymphedema are very different than those for arm lymphedema. For example, the tissue around the chest wall is much less bulky and has much less muscle than the arm. The breasts themselves have no muscles at all to pump out fluid. Therefore the amount of compression needed on the breasts and trunk is far less than in the arm.
Another problem with determining the appropriate amount of compression for truncal edema is that swelling, pressure, and discomfort frequently fluctuate with heat, activity, and even with flying. The level of edema in the trunk is very sensitive to pressure changes, which is why adjustability (especially in milder cases) is a much needed - and much appreciated - element in truncal compression.
With no absolute measurements, many practitioners around the country are using patient comfort as an indication of appropriate compression for the\n trunk, and are getting excellent symptom amelioration and edema reduction. Practitioners tell of patients reducing as much as two cup sizes within a week or so while they are in active treatment that incorporates an appropriate compression garment. Patients are then able to maintain this improvement with independent treatment. "
Sometimes the best guide is the patient’s mobility or degree of pain relief. Patients can feel when their movements are less restricted, and when linear pressure around the trunk has been reduced. This is very important, especially when we are trying to clear the UE through the affected chest wall, because it provides improved drainage for alternate lymphatic pathways.
An appropriate compression garment provides for all of these variables for the patient with truncal edema. Avoid using mastectomy and sports bras, which are not designed for truncal lymphedema. Instead, choose a bra that provides full coverage for the torso (i.e. a long silhouette on both front and back, with coverage high under the arms), and that has wide, padded straps for patient comfort, and a front zipper for easy donning. (For more information on appropriate compression for truncal lymphedema visitBellisse
Bellisse
Breast Lymphedema
A Conversation With Lymphedema Therapist Lesli Bell , PT-LANA
by Elizabeth Pennebaker, M.A., M.St., D.Phil.
Q. How can you tell if a patient has breast lymphedema?
LESLI — Well, the symptoms are consistent with chronic edema and lymphedema, but the problem is that there is not yet an objective measurement for truncal lymphedema (that is, lymphedema of the breast, chest, and/or back). As a result, many less experienced practitioners often miss it. Therapists usually have to go by feel, because the visual signs are subtle, and often may be attributed to post-radiation effects. Also, because breast lymphedema is usually quite painful (in contrast to other edemas) it can often be misdiagnosed as an infection or, in extreme cases, inflammatory breast cancer. But if you don’t diagnose and control lymphedema, it can lead to exactly that – an infection. So detection and treatment are crucial.
Q. If you can't measure breast lymphedema, how can you be sure you’re treating it appropriately?
LESLI — Using Manual Lymphatic Drainage and compression garments with arm edema is well documented in the literature. This approach improves the control of the problem dramatically. It makes sense that if you have an edema problem somewhere else, the same treatment would help. Anecdotally, we know that massage and compression frequently decrease patients’ discomfort in the chest and breast area. So how do we know how much massage and compression is therapeutic? We go by comfort. Believe me, our patients tell us very clearly that they are much more comfortable after treatment!
Q. What has been your patients’ response to treatment with massage and compression garments?
LESLI —In my experience, once patients get treated with massage, they feel much better. However, it used to be that the only way to keep swelling down after treatment was with bandages – which were hard to put on, uncomfortable, and looked terrible under clothing. Now that a compression bra is available, my patients have a vastly improved quality of life. Some women I’ve seen couldn’t leave the house, couldn’t be touched, could hardly get through the day. After they were treated with massage and fitted with a compression bra, they stopped suffering and got their lives back again.
Lymphedema Success Stories
by Elizabeth Pennebaker, M.A., M.St., D.Phil.
While lymphedema of the arms and legs following cancer treatment is well-documented and extensively treated, truncal lymphedema (lymphedema of the chest, breast and/or back) is far less known – even though some studies show that up to 80% of women may develop truncal lymphedema after certain breast cancer diagnosis and treatment procedures. Because truncal lymphedema is not as widely acknowledged as lymphedema of the extremities, physical therapist Lesli Bell, PT-LANA, found that there were no appropriate compression garments available for the chest and breast area. Frustrated by seeing her patients suffer needlessly, Bell, together with Jogbra® inventor Lisa Lindahl, designed a compression bra women with truncal lymphedema. Bell and Lindahl then started to travel around the country to clinics and conferences, helping to educate the medical community about truncal lymphedema.
Bell and Lindahl take every opportunity of alerting medical professionals to the prevalence of the problem, and to the extreme pain, suffering, and disability it can cause. Lesli also gives other therapists tips on diagnosing truncal lymphedema, something that is often very difficult to do because swelling in the trunk is not as obvious as in the extremities – and because truncal lymphedema can mimic many other conditions, such as post-radiation soreness, infections, or even inflammatory breast cancer.
Bell and Lindahl hope that their efforts have contributed to the medical community’s increasing acknowledgement of truncal lymphedema as a significant problem for breast cancer survivors. However, they also like to emphasize the positive by talking about the freedom and high quality of life that can come from appropriate treatment and compression. For example, they love to tell the story about the woman they met in New York whose breasts had been too swollen and painful for her to ride her beloved horses, and who, after being fitted for a compression bra, felt so good that she headed straight for the stable. Because lymphedema can be brought on or exacerbated by flying, Bell and Lindahl also count as a great success story the woman who was finally able to take her dream vacation – including a 24-hour flight to Australia! – after purchasing a bra that delivered appropriate truncal compression.
Insurance Covers the Right Compression Garment for Truncal Lymphedema, So Don’t Settle for Less!
Women wear all kinds of shoes to the grocery store, from high-tech running shoes to strappy high heels. But when a woman goes out for a run, she knows she needs to leave the heels at home and choose the running shoes that will support her feet properly.
The same principle applies to choosing the right compression garment for truncal lymphedema. Any woman who has undergone breast cancer treatment is at risk for truncal lymphedema, which is the painful buildup of fluid in the chest, breast and/or back. The wearing of compression garments is a standard part of treatment for lymphedema.
Sometimes women at risk for truncal lymphedema are encouraged to wear sports or mastectomy bras because they may be less expensive than a real compression garment. However, while sports bras and some post-surgical bras may offer a bit of compression, they are like high heels – they may function in some situations, but they are just not designed for the specific needs of truncal lymphedema patients. Design features that are fine for athletes or mastectomy patients – underwires, narrow shoulder straps, wide armholes, traditional “bra” silhouettes – can be painful or even harmful to women with lymphedema, because they may dig into swollen skin and block the drainage of lymphatic fluid.
But there’s good news: the only bra specially designed for truncal lymphedema is also suitable for athletic activity, and contains pockets that can hold prostheses for mastectomy patients. This means that a woman with (or at risk for) truncal lymphedema might actually save money by buying a single garment instead of multiple ones! Or she may choose to add this versatile garment to her wardrobe of wearable treatment options.
And there’s even better news: most private insurance companies are reimbursing for the compression bra, which means women can base their choice of compression garment on their medical need– not just on price.
Invest in the right compression bra the first time! You’ll be glad you did!
Breast Cancer’s “Dirty Little Secret”
by Elizabeth Pennebaker, M.A., M.St., D.Phil.
“Suzanne’s” breast cancer was in remission – but her breasts were still so painful that she couldn’t bear to have her husband touch her. She came to the clinic of physical therapist Lesli Bell almost in tears, telling Bell that her pain was like a “migraine in her chest”.
Suzanne was one of a large and growing number of breast cancer survivors with truncal lymphedema (lymphedema of the breast, chest, and/or back). Although some studies suggest that up to 80% of women may develop truncal lymphedema after certain breast cancer diagnosis and treatment procedures, the condition remains largely\n unacknowledged in the medical community – a kind of “dirty secret” behind the advances in breast cancer treatment. Like the better-known lymphedema of the extremities, truncal lymphedema occurs when protein-rich lymphatic fluid accumulates in tissues, causing swelling, tenderness, and infection.
However, unlike most lymphedema of the limbs, truncal lymphedema can be agonizingly painful. Bell treated Suzanne with Complete Decongestive Therapy, a combination of lymph drainage, infection prevention, and self-maintenance techniques. After several treatments, Suzanne experienced a 90% reduction in her symptoms and enjoyed a quality of life she hadn’t had for years.
Now Lesli and Suzanne faced another challenge. A crucial part of Suzanne’s self-care regimen was the use of compression to prevent the re-accumulation of fluid, but there were no compression garments on the market for the trunk and breast area. Lesli ended up having to design and manufacture a\n compression garment herself, which give Suzanne the comfort and freedom she needed to live normally again. "