Frequently Asked Questions


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See a transcript from OncoLink's live webchat: Physical Activity & Lymphedema (PAL) Trial Results with Dr. Kathryn Schmitz,PhD, MPH – Brown Bag Chat.

  1. What is lymphedema?
  2. According to the National Lymphedema Network, lymphedema is an accumulation of lymphatic fluid in the interstitial tissue that causes swelling, most often in the arm(s) and/or leg(s), and occasionally in other parts of the body. Lymphedema can develop when lymphatic vessels are missing or impaired (primary), or when lymph vessels are damaged or lymph nodes removed (secondary).
     

  3. Can you have lymphedema in your chest or torso in addition to or instead of your arm?
  4. YES. Lymphedema can be present in the chest wall or other areas that are part of the lymphatic system such as your torso, or axillary area.
     

  5. How do I know if I have lymphedema?
  6. If you experience any change in symptoms (i.e., swelling, heaviness, tight fitting clothing) in your upper body on the affected side, you should go to your doctor for a referral to a lymphedema specialist ASAP. The lymphedema specialist will conduct an evaluation and be able to tell you if you have lymphedema. The sooner your lymphedema is diagnosed, the better your outcome will be. If you catch lymphedema in its earliest stages, you can start a course of treatment and help manage it so it does not get worse. So if in doubt, just go get checked!
     

  7. Can you recommend a good lymphedema specialist?
  8. See www.lymphnet.org. Click on Find Treatment tab.
     

  9. How do I know if I am receiving good care for my lymphedema?
  10. The National Lymphedema Network has a position stand on training of lymphedema therapists. Be sure that your therapist meets these qualifications. Unfortunately, there is no licensure required for clinicians to call themselves a lymphedema therapist (much like for fitness professionals!). Therefore, it is important to know what constitutes good training. See: www.lymphnet.org/lymphedemaFAQs/positionPapers.htm for the position stand.
     

  11. I used to have lymphedema, but I don't anymore.
  12. Lymphedema is a chronic condition. Once you are diagnosed with lymphedema you always have lymphedema. Some people have very well managed lymphedema and no symptoms are present, but that doesn't mean the lymphedema went away.
     

  13. What would you recommend for proper skin care for breast cancer survivors?
  14. The National Lymphedema Network Position statement on skin care can be found here: www.lymphnet.org/lymphedemaFAQs/positionPapers.htm and includes the following advice:

    • Keep extremity clean and dry
    • Apply moisturizer daily to prevent chapping/chafing of skin
    • Attention to nail care; do not cut cuticles
    • Protect exposed skin with sunscreen and insect repellent
    • Use care with razors to avoid nicks and skin irritation
    • If possible, avoid punctures such as injections and blood draws
    • Wear gloves while doing activities that may cause skin injury (i.e., washing
      dishes, gardening, working with tools, using chemicals such as detergent)
    • If scratches/punctures to skin occur, wash with soap and water, apply antibiotics, and observe for signs of infection (i.e. redness)
    • If a rash, itching, redness, pain, increased skin temperature, fever or flu-like symptoms occur, contact your physician immediately for early treatment of possible infection

     

  15. Do I need to wear a compression garment during air travel?
  16. This is debated. Results from recent studies suggest that it may not be necessary to wear a compression garment while flying if you do NOT have lymphedema. According to the National Lymphedema Network, if you have a confirmed diagnosis of lymphedema, you should wear a compression garment while flying. If you are at risk for developing lymphedema, you should factor in the risk factors and consult with your doctor. One thing is for sure: a poorly fitted compression garment and arm compression without compression for the hand, are likely worse than no compression.
     

  17. Do I need to work with a personal trainer to do the PAL Trial intervention?
  18. We strongly recommend that all breast cancer survivors work with a qualified professional who has had instruction on how to work with cancer survivors. This could be an ACSM certified cancer exercise trainer, a physical therapist, or other clinician. You can potentially put yourself at harm for developing lymphedema if you just jump in and start lifting weights on your own. The PAL Trial intervention is very specifically designed for your safety and requires a very slow progression of strength training with specific pre-exercise evaluation, exercise guidelines, and guidelines for monitoring symptoms.
     

  19. Can you send me a copy of the PAL Trial protocol?
  20. We will only provide the exercise protocol to qualified professional physical therapists and/ or personal trainers with adequate training accreditations. We do this in order to protect the survivor from putting yourself at harm of developing or worsening lymphedema. Please see the registration form if you, or your therapist/ trainer are interested in receiving instruction on our protocol.
     

  21. Can you train my friend/relative in how to do the PAL Trial intervention? He/she is going to be a personal trainer.
  22. We will only provide the exercise protocol to someone who is already a qualified personal trainer with adequate training accreditations, such as an ACSM Certified Cancer Exercise Trainer. Please see the registration form if to receive instruction on our protocol.
     

  23. Where can I find someone to teach me the PAL Trial intervention?
  24. Click here to find a qualified trainer near you. You can also suggest to your exercise facility that they look into having their personal trainers trained in the PAL protocol.
     

  25. I have a family member that lives in a different part of the country, how can they get involved in something like PAL?
  26. We can provide the exercise protocol to qualified professional physical therapists and/ or personal trainers with adequate training accreditations in your area. Please register here if your therapist/ trainer are interested in receiving instruction on our protocol.
     

  27. I have done strength training for years. Even though I have now had treatment for breast cancer, I think it is safe for me to do strength training on my own. Am I right?
  28. Sorry, no, you are not right. In fact, women with a history of strength training experience are at even higher risk of overuse of the affected limb when re-starting strength training. Even if you have experience with strength training, we strongly suggest that all survivors work with a qualified personal trainer who has had instruction on how to work with cancer survivors.
     

  29. Do I need to wear a compression sleeve while doing the strength training?
  30. If you have been diagnosed with lymphedema, then YES, you should wear a custom fitted compression sleeve and glove while doing strength training. All PAL Trial participants that had lymphedema were fitted for a garment from BSN-Jobst and were required to wear it during strength training at all times.
    The National Lymphedema Network (NLN) Position Statement states that “the majority of individuals with lymphedema can safely perform strength training exercises, with the affected body part, when a compression garment is worn.” The NLN states that the garment should be well-fitting, support the at-risk limb with a compression garment for strenuous activity (i.e. weight lifting, prolonged standing, running) except in patients with open wounds or with poor circulation in the at-risk limb.
     

  31. Do I need to wear a compression glove on my hand while doing the strength training?
  32. We always recommend that a glove is worn in conjunction with a compression sleeve so that swelling is not forced down into the hand.
     

  33. Should I do stretching with my affected arm/side?
  34. YES. Flexibility training is very helpful for survivors, both with and without lymphedema. The definition of stretching is “comfortable tension”. This is very important with survivors so please take it slow and controlled and follow all proper technique for all stretching and flexibility activities.
     

  35. Should I just exercise the unaffected arm?
  36. NO. We know that movement and exercise is good for the lymphedema affected arm. There is no reason to avoid exercise of the affected arm unless there is some other (e.g., orthopedic) reason for not exercising the affected arm.
     

  37. What's the most weight that is safe to lift?
  38. Start with the lowest possible resistance for all exercises and progress slowly from there. We do not place an upper limit on amount of weight to which you can progress. The PAL protocol is designed for safety first. So you will begin with very light weight and very slowly progress to heavier weights as your individual muscular strength and endurance allow. There are specific safety guidelines to follow before moving up to the next weight. You should be able to gain enough functional strength to do all of the things that you want to be able to do in your life. This does not mean that your boss can require you to lift things at work that are beyond your current capacity. See Dr. Schmitz article called Weightlifting and Lymphedema: Clearing Up Misconceptions for more on this topic. http://www.lymphnet.org/lymphedemaFAQs/weightliftingLE.htm
     

  39. Will I be able to lift what I used to be able to lift?
  40. Some women reported that they experienced greater strength after the PAL intervention than they did before they had breast cancer. Your maximum limits will be very individualized based on your own personal experiences (i.e. injuries and/ or surgeries can decrease strength).
     

  41. How long should I wait to recover from surgery before starting to do weight training?
  42. Ask your surgeon when you can begin doing all of your usual daily activities. You can begin weight training at that same time, with VERY low weights.
     

  43. Should I exercise with exercise bands (Therabands)?
  44. NO. Exercise bands are an excellent exercise choice for most people. However, we do not recommend them for breast cancer survivors because it is difficult to be exactly sure of how much resistance (weight) the band is providing and because of the effects of gripping the bands on the muscles of the hands. The PAL Trial proved that slow progressive weight lifting is safe for breast cancer survivors.
     

  45. Should I do push-ups?
  46. Body weight exercises fall into the same category as exercise bands. We have no way of knowing exactly how much resistance (weight) your body is providing against you. The PAL Trial proved that slowly progressive weight lifting is safe for breast cancer survivors.
     

  47. Are there any other studies for breast cancer survivors?
  48. Please refer to our Clinical Trials page. This link will direct you to current studies going on at Penn. You can also provide us with your information so that we can contact you if we conduct studies for breast cancer survivors.
     

  49. Where can I find the results of the PAL Trial?
  50. Please visit our PAL Publications page.
     

  51. What other forms of exercise are safe or useful for breast cancer survivors?
  52. See the American College of Sports Medicine guidelines for exercise in cancer survivors. For ANY activity you want to try, be aware that it is recommended that all breast cancer survivors undergo an evaluation of arm/shoulder problems prior to doing upper body activity. Further, watch for symptom changes in the arms/shoulders and be sure to stop activities that bother your arms/shoulders and get an evaluation prior to proceeding.


Physical Activity and Lymphedema