Andrea Cheville is answering LE questions

kira66715

LBBC is having Andrea Cheville answer questions on LE during July:

http://www.lbbc.org/Learning-From-Others/Ask-the-Expert/2013-07-Understanding-Lymphedema

I listened to a webnar she gave a few years ago, and I've referred to the transcript. She's a great expert, and great speaker, so please ask your questions.

July 2013 Ask the Expert: Understanding Lymphedema

Lymphedema is an important side effect to know about as you go through breast cancer treatment. During the month of July, get your questions answered about what lymphedema is, what causes it, ways to reduce risk, and what treatment and management options are available.

If you have questions about lymphedema and how it may impact your everyday life, 

We will answer as many questions as possible, but we cannot answer all questions submitted. We will post answers on an ongoing basis throughout July. 

QUESTIONS on lymphedema or lymphedema risk can be submitted at:
http://www.kintera.org/site/c.ajIRK7NHLeJ4E/b.8728997/k.711/201307_Ask_the_Expert/apps/fc/form.asp

ANSWERS will be posted later at:
http://www.lbbc.org/Learning-From-Others/Ask-the-Expert/2013-07-Understanding-Lymphedema

kira66715

I asked: any new advances in treatment? What risk reductions do you support? What do you make of the explosion of surgeries purporting to treat LE and the dearth of data to support their value long term.

proudtospin

love to hear this but guess my computer does not like the link~~~

kira66715

That's why I added the later links, my computer hated the link also. The one's I listed worked for me: this let me ask three questions ( kind of like a genie in a bottle...)

http://www.kintera.org/site/c.ajIRK7NHLeJ4E/b.8728997/k.711/201307_Ask_the_Expert/apps/fc/form.asp

Beryl2

Where can we find the answers to the queries?

kira66715

Well, I went on LBBC and it looks like Andrea Cheville did not answer our questions, but two PT's from Philadelphia did--(I think Andrea Cheville is great, and a wonderful lecturer, but why is she always kind of missing in action when we ask her for help? JMHO)

http://www.lbbc.org/Learning-From-Others/Ask-the-Expert/2013-07-Understanding-Lymphedema

July 2013 Ask the Expert: Understanding Lymphedema

Lymphedema is an important side effect to know about as you go through breast cancer treatment. During the month of July, Living Beyond Breast Cancer experts Joy Cohn, PT, CLT-LANA, and Stephanie Duczak, PT, CLT-LANA, answered your questions about what lymphedema is, what causes it, ways to reduce risk, and what treatment and management options are available.

Question: What causes lymphedema to flare up? I was doing pretty well with the swelling in my hand and arm for over a year. All of a sudden the swelling returned, especially in my hand.

Ms. Cohn: Any event that leads to additional blood flow into the area at risk may be the inciting event for swelling to occur: excess heat, excess activity when the limb is not used to it, infection (cellulitis) and trauma are common inciting events. Sometimes we can’t identify a specific event, but the very slow accumulation of excess fluid and protein finally exceeds the tissue's capacity to hold the fluid.

We speak about lymphedema having stages; one is called ‘latency’ because in this case there is additional fluid already in the tissues, but we don’t see actual swelling because the tissues can have up to 30–40 percent extra fluid saturating them before actual swelling is seen. In this stage a person may feel heaviness, achiness or unusual sensations. If these symptoms are in your limb and they last for a week or more, it might be a good idea to see your doctor or a therapist who specializes in lymphedema treatment. Many women have these kind of sensations intermittently for many years before a swelling is actually apparent.

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Question: What are your specific strategies for long-term lymphedema management both for patients and physical therapists with respect to wrapping versus sleeves, pumps, massages, etc. and why? Please include any others not listed above.

Ms. Cohn: It is my belief that CONSISTENCY is the key to successfully managing lymphedema. Well-fitting daytime compression garments are key because they are used when you are active with more blood flow in the tissues. In addition, the arm is ‘hanging down,’ encouraging blood to pool in the limb. A compression garment reduces the leakage of fluid from the blood vessels AND enhances the pumping action of the muscles, removing more fluid from the limb throughout the day. Compression bandaging is considered the ‘gold standard’ for managing swelling, but many women choose to use bandage alternatives at night: custom or adjustable low-stretch garments that support the tissue while sleeping. 

Why should compression be used both day and night? It is because the tissue fluid that must be managed is produced by our blood flow and our blood is flowing both day and night! Self manual lymphatic drainage (MLD) is practiced by some women, but it is difficult to be as effective as a therapist is with this technique.

Some women seek out practitioners for regular MLD as a maintenance treatment. Unfortunately, it is almost never covered by medical insurance and in any case, it does not take the place of daily self care: compression and meticulous skin care. An analogy would be that we get our teeth professionally cleaned twice a year, but that can’t substitute for brushing daily twice a day.

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Question: Since my surgery was over 3 months ago, should I still be having so much swelling?  Should I consider going to a lymphedema specialist? 

Ms. Cohn: Yes, it is normal to see some degree of postoperative swelling and many women also will experience some fluctuation in swelling during their adjuvant treatment.However, 3 months of swelling should be evaluated by your doctor and a lymphedema therapist because lymphedema is always easier to treat when it is addressed early on. Many women are unaware that lymphedema can also occur in the breast on the side of the cancer and is also treated very successfully using the same type of treatment used to treat arm lymphedema.

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Question: What are the best exercises? Anything to avoid in terms of physical activity?

Ms. Cohn: Women do all of the usual kinds of exercise after treatment for breast cancer! However, recent research has given us some good guidelines regarding how to return to (or start!) an exercise program.

The PAL trial was a research study conducted in Philadelphia, Pa., which had women do regular weight lifting after being treated for breast cancer. There were women both WITH lymphedema and AT RISK for lymphedema in this study. They were able to safely exercise following a program that included a warm up of light aerobic exercise, flexibility exercises, core strengthening exercises, weight lifting and then flexibility, and cool down exercises again. The mantra of this program was: START LOW and PROGRESS SLOW.

Both the AMA (American Medical Association) and the ACSM (American College of Sports Medicine) strongly recommend exercise for cancer patients at any stage during their journey.  They state that ‘Exerciseis Medicine’ and research is providing stronger evidence all the time that it can help with cancer fatigue, reduce the tendency towards weight gain after breast cancer treatment and reduce the risk of a recurrence of cancer. Seek out an evaluation by your MD and a physical therapist if you have musculoskeletal problems or have never exercised so that you can learn how to exercise correctly! 

In terms of avoiding exercise? It is recommended that people at risk for lymphedema should avoid hot yoga (Bikram) because it will potentially cause an increased tendency to edema.

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Question: Is full-body lymphedema a real diagnosis? What is the best way to address it?

Ms. Cohn: What you describe is very rare. Often swelling throughout the body is an indication of a systemic condition, which should be evaluated by a physician. Please consider a medical workup to rule out cardiac, renal or other medical conditions that are more likely as causes of what you describe.

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Question: There seems to be some controversy concerned with wearing a compression sleeve. If you have had lymphedema at one point but no longer have swelling, is it necessary to keep wearing the sleeve other than for exercise and flying?

Ms. Cohn: If you have never had lymphedema, there is no evidence to suggest that it is necessary to wear one in ANY situation. If you have experienced swelling before, it is considered prudent to wear one when flying or doing heavy exercise. HOWEVER, if you wear a sleeve for exercise or flying WEAR A GLOVE OR GAUNTLET to prevent swelling in your hand. In the 17 years that I have treated lymphedema - the women I saw who developed swelling on a plane were wearing a sleeve and no handpiece and their hand swelled up! Wearing a sleeve, alone, on a plane is like putting a tourniquet on your arm.

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Question: I find wearing my lymphedema glove and sleeve uncomfortable. Are there any other options to help keep the swelling down?

Ms. Cohn: For daytime, a sleeve and glove are probably the best choice. There are many different styles of garments and fabrics that may be appropriate for you and would be more comfortable to wear. Have you had treatment to reduce the congestion in your arm before you obtained the garments you wear? Garments are usually not comfortable if worn on an arm that is congested. Also, do you wear compression garments at night?  Bandaging or a bandage alternative at night may help to make your daytime compression garments feel more comfortable, when your arm is less swollen when you put them on in the morning.

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Question: I had breast cancer twice, in 1980 and 1992 (a new primary the second time). I did not develop lymphedema until 2012.  Is this unusual? I know this is a lifetime risk, but I seem to be the only one I can find with such late-onset lymphedema.

Ms. Cohn: The best research paper published regarding your question found that the majority of lymphedema occurs within the first 3 years after diagnosis; however, they found that there was a small, but steady accrual of cases in the following years. I personally treated a woman who first had swelling 30 years after her treatment for breast cancer.

You are correct in saying that there is a lifetime risk, so I always counsel women to just ‘live smart’. The best information in this regard can be found in the Position Paper on Risk Reduction available from the National Lymphedema Network at their website, www.lymphnet.org. 

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Question: I have been terribly lucky and have not had lymphedema much at all, but I am now terrified to travel by airplane as I have heard that flying can bring it on. Would wearing a sleeve help? Would one use a gauntlet as well? Any other suggestions? I know that it's easier to get recurrences of lymphedema once you've had it, so my goal is to not get it in the first place.

Ms. Duczak: The change in cabin pressure during flying alters circulation in the body, increasing the chance for swelling to occur. The sedentary nature of a flight in addition to the tendency for dehydration and need for heavy lifting (i.e. luggage) also increase the risk. 

While there are no specific recommendations for wearing compression to prevent lymphedema during air travel, I think use of a compression sleeve is appropriate in this situation. It must be fitted properly — I recommend you see a lymphedema therapist or a certified fitter. I do recommend that you use a gauntlet, as well, because if swelling does develop, there is a chance it will include the hand. 

Move your arms throughout the flight and stay well hydrated. The risk of swelling from flying is only considered to be while you are in the air, but I usually recommend people keep the sleeve and gauntlet on until you reach the baggage claim and have picked up your luggage. You can be sure your circulation will have stabilized by that time.

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Question: Do you know why medical supply places require a prescription to buy a sleeve — or does that vary by state perhaps? Can I buy one online without a prescription?   

Ms. Duczak: Medical supply companies usually require a prescription in order to bill insurance and to ensure that you receive the appropriate type of compression for your lymphedema (they are not medical professionals and cannot prescribe garments.) You can buy compression garments online without a prescription, but I would recommend being evaluated by your physician or a lymphedema therapist prior to doing so.

A trained medical professional should determine what compression garment is right for you. A compression sleeve or glove that does not fit properly or is not the right compression level will not control your swelling and could worsen your condition. 

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Question: Is lymphatic drainage massage encouraged or discouraged? What about dry brushing? 

Ms. Duczak: Manual lymphatic drainage is encouraged for patients who have or are at risk for developing lymphedema. Research supports its use to improve lymphatic circulation. It is usually incorporated into lymphedema treatment and is taught to the patient for maintenance of the arm. I don’t know of any evidence for dry brushing helping with lymphedema or lymphatic circulation at this time. Dry brushing does likely increase circulation by increasing blood flow, but not of the lymphatic system specifically. 

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Question: Would you address the number of axillary lymph nodes removed and risk of lymphedema? It seems that some resources say a sentinel node biopsy of 1 or 2 nodes would be a low risk for lymphedema. Other resources say that with removing more than 10 or 11 nodes the risk for lymphedema increases. 

Ms. Duczak: It is true that the more axillary lymph nodes you have removed, the greater your risk of developing lymphedema. Removing 1–2 may not have as much of an impact as removing 10–15. With that being said, removal of lymph nodes is not the only risk factor for developing lymphedema.

For example, many women who have sentinel node biopsies undergo radiation therapy. Radiation therapy significantly increases the risk of developing lymphedema due to the trauma and scarring that occurs to the lymphatic vessels. Trauma, infection and obesity are also risk factors. So while it is true that the more lymph nodes you have removed, the greater your risk, there are still other factors that you should consider in your overall risk for lymphedema.

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Question: I have had chemo, bilateral mastectomy, [removal of] lymph nodes (4) and radiation in 2011 – 2012. I have left-side armpit and trunk swelling, will this ever go away? 

Ms. Duczak: Surgery and radiation cause a lot of tissue trauma and can cause swelling in the chest, trunk and arm. Typically, swelling after surgery and radiation therapy will reduce in 6 months to 1 year. However, sometimes it can be a little longer. Lymph node removal and radiation therapy both increase your risk of developing lymphedema, so I would recommend that you be evaluated by your physician or a lymphedema therapist to determine if this could possibly be a lymphatic condition. Whether it is regular swelling or lymphedema, there are treatment options that could help reduce this. 

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Question: Where online can I go to get proper exercise information for making me better and more comfortable? 

Ms. Duczak: This is a very general question, as I do not know exactly what your complaints are or what treatment you have had. The websites for the National Lymphedema Network ( www.lymphnet.org) and the American Cancer Society ( www.cancer.org) give general information about returning to exercise after cancer treatment and reducing your risk for developing lymphedema. Flexibility, strength and endurance all are significantly impacted by cancer treatment. This can increase your risk of injury when returning to exercise. Many patients do well with a short course of physical therapy, to address their specific issues and to get assistance on returning to a safe and appropriate exercise program. 

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Question: I only had 2 nodes removed during my sentinel node biopsy. Am I really at risk of lymphedema? How high is my risk?

Ms. Duczak: Having a sentinel node biopsy significantly reduces your risk for developing lymphedema. The fewer nodes removed, the better. With that being said there are other risk factors that can increase your likelihood of developing lymphedema. Radiation therapy, trauma to the arm, infection and obesity are some of these risk factors.  So if you have only had two nodes removed, I would say you are low risk, but if you have any of these other risk factors your risk will be higher. The more factors you have, the higher the risk. 

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Question: I do have sleeves, and I wear one every day.  I want to know if it is safe to use my arm for things like using a hammer, pulling weeds, or working out with weights while I have it on? 

Ms. Duczak: All these activities can be safe for you if they are done properly. The motto is “start low - progress slow.” You want to gradually increase your activity level, monitoring for any symptoms or changes in your arm (i.e. pain, swelling, feelings of fullness or heaviness).  Don’t go out and do all these activities on the same day. Break them up on to different days to give your arm a break. And if you are weight training, you should start with the lowest weight possible and work up gradual

carol57

Kira, thank you for posting this.  Overall, I think the therapists did a good job answering the questions. The answers are detailed and I am pleased to see that they land on the side of common sense on the use of compression while flying, unlike the NLN position papers that refuse to take a real stand on the question.

kira66715

Carol, I totally agree, just wonder what ever happened to Andrea Cheville, but I think these answers make a good and sound FAQ list.

carol57

Maybe, just maybe, the answers are better coming from the very experienced and pragmatic therapists, than from an MD who knows a lot about LE and sees a lot of it, but as a researcher may be reluctant to take a stand when she sees evidence on both sides of an issue.  I think that's a big problem from researchers, so in the end, the FAQ is stronger from a day to day clinician.  In my uneducated opinion!

kira66715

Um, you're extremely well educated, in LE and lots of other things. I just remembered that they marketed it as Andrea Cheville and then these therapists from Penn (where she used to work, before she moved to Mayo) answered. When I've heard her speak, she's very clear, and I think she has a wealth of clinical knowledge, but for whatever reason she didn't generate the answers. But, IMHO, I think the therapists wrote good answers

sushanna1

Kira--Thanks for posting.  I think that they did a good job, but then I am admittedly biased.  Joy Cohn has treated me at least once a year since 2005.  She's great.  

kira66715

Sushanna, I wouldn't call it bias, I'd call it a strong endorsement, based on personal experience, and we are grateful for her thoughtful responses and being a great clinician.

kayezzy66

Thanks for this,ive got lymphedema,and ive had theraphy on it,and will go back after radiation...it did help.I wear a compression sleeve all day,and take it off at night.I hate it,just something else to worry about,that i never expected from bc.Never even heard about it from the dr. or nurses...

Binney4

Hello, Kay, and welcome!

I'm really sorry about this nasty lymphedema surprise, but glad you've already landed with a therapist who's standing by to help. Hoping the remainder of your rads flies by quickly and you'll soon be on the road to healing. Please feel free to come here to vent or ask questions--lots of Swell Sistahs here to cheer you along! If you haven't already, you might want to check out the lymphedema information at StepUp-SpeakOut.org as well as the information pages here at bc.org.

Be well!
Binney

georgie1112

Can you get lymphedema in your back? I have mild intermittent lymphedema from a 2006 surgery in my right arm, but it is under control until after the most recent surgery. Just small flare ups. After my BMX, my back just behind where my breasts were and under the armpit are squishy. Thought it was post surgical, but the swelling goes up and down depending on what I do. It is about 1" or a little more of squishiness. Then it will go down. Don't know where to direct massage because chest lymph drainage is disrupted. Think when my arm is swelling I am pushing the fluid to my back with MLD and it isn't draining well?

georgie

carol57

georgie, yes and yes...LE can go to the back, and it's possible your MLD is pushing lymph there. Can you direct the lymph down your sides and then toward the groin nodes? You might try some swell spots in the trouble areas, tucked into your bra or into a compression camisole or T. A compression T like UnderArmour or a shapewear T shirt may give you enough compression in that whole area to discourage fluid build up.

georgie1112

Carol,

THANK YOU!!! Have requested an appointment with LE therapist but there have been issues with my insurance so hoping I can get an appointment today. I never learned how to move fluid into the groin. Or if I did I've forgotten. Are there any good videos or online directions for MLD to the groin?

I really can't do anything normal without swelling up and am frustrated. Also have an infection which I believe caused the first LE.

Georgie

carol57

Georgie, here's a credible video by Heidi Roe at Michigan State University:

http://www.youtube.com/watch?v=GoC8BNVPBb0

She demonstrates MLD for those with bilateral LE, which I don't think you have, but the technique of moving fluid down to the inguinals is what you might try.

I hope you get that appointment!

Carol

georgie1112

Carol,

THANKS!!! This forum is invaluable. I have an appointment but it is for December 4... way too late and I am flying over Thanksgiving which is always a concern for me. Just got home from having fluid drained from my midriff. Seroma? Gee I feel like a pufferfish blowing up. Could the seroma fluid be causing a problem with lymphedema? Think I am going to call the LE therapist back to see if I can get in earlier and not have a 90 minute appointment.

Georgie

carol57

georgie, a seroma in the midriff area following mastectomy seems unusual to me, but I have zero medical background or personal experience to know, one way or the other. I hope you do get that appointment with the LE therapist to learn more. Keep us posted!

georgie1112

Carol,

I have seromas in my midriff under the BMX scars which are still being drained every 3 or 4 days, edema in the post axila area the diameter of an orange on both sides and my LE arm is talking to me when I am not exercising... Saw a LE therapist. She gave me stretching exercises, PT, and showed me how to do MLD to the groin and recommended compression shirts or Spanx. The MLD she did cleared most of the edema. I bought 2 tight shirts but they don't have enough compression to prevent swelling. Checked ABC compression bra and Anita 1198 compression. They felt so good and covered the edema areas well. The other garments did not. But the store did not have my size. 38B? There is only one other store in town and I will check them, though I could try ordering online if the other store cannot get me the bras before I have to fly.

The unfortunate part about the LE therapy visit is she said it was okay that the gauntlet made my fingers swell and turn purple because the swelling subsided. But the pain on the plane is very painful and I really don't think my fingers should be getting swollen on the part where there is no glove. I thought it was standard to take measurements. Sorry there are too many things going on and I don't know if they are related or not. Very confusing.

Georgie

Buddhahead

I wasn't sure which place to post this, but I wanted to share what's working for me with truncal lymphedema. My reconstruction was in March and I've had rads and mastectomy etc., etc. Since the initial surgery and TE's and then rads, I've had tightness and fluid retention in my back/shoulder area and back of arms where they connect to the shoulder and some in my side and a bit in my arms from time to time. The docs didn't seem to really do anything about it or care about this discomfort, but I finally asked to see the PT who specializes in lymphedema. She does massage but had attended a workshop on using Kinesiotape. I had used the tape for athletic injuries so was familiar with it. After she put the strips on, I got almost immediate relief. The tightness diminished and the puffiness went down as well over the next few days. I'm active and exercise a lot and do yoga and watch my sodium, with all of them contributing to the lymphedema control, but what really helps is the Kinesiotape. You can also buy it online. It's also called rock tape or KT tape. I can now put it on myself and my husband helps affix the ones I can't reach. I hope this helps someone else. It was really frustrating not getting any attention from the docs about this. Sometimes you just have to keep pursuing possibilities on your own and be your own advocate.

Best to all. Hugs,

Lynn

carol57

georgie, can you get measured for a glove to replace the gauntlet? I'm getting some hand swelling when I fly lately, so I may be going that route.

Lynn, Ktape has worked for a lot of women here. Did you need a lot of practice to get it right? My LE therapist is clueless on this product, so I'm wondering how big the learning curve is. I would have to go some distance to find someone who knows how to use it, and I'm reluctant if that means a lot of trips back and forth. I don't have a lot of swelling, but I have long wondered if Ktape would relieve some of my LE arm aches.

georgie1112

carol57,

I think I would have to pay $100 to get this therapist to measure my hand. I will bring my bandage if my hand is swelling and hurting on the plane. Or have a friend measure me and get a glove online.

Lynn- Yes! It IS very frustrating that doctors are not paying attention. Surgeons are so often not helpful about post surgical issues. Interesting that women who have plastic surgery for their breasts wear compression right away. Wonder why we don't?

Am interested in KT tape. Are there pictures of how to apply it? Your swelling sounds like where mine is and I am told it will go down. But it is getting bigger and no one seems to care. Makes me feel like a complaining patient but am worried. I am going to see if there are pictures of the tape online.

Going to get fluid drained today from the seromas which might be leaking into the other area. Who knows...

Thanks!

Hugs,

Georgie

carol57

georgie, it is so frustrating to have to pay so much for measuring and the like. I found a durable medical equipment vendor that measures thoroughly and well, and I travel there (3 hours away) when I need re-measures for new garments. My LE therapist does not measure for garments at all, and the place she referred me to originally seemed clueless. When I eventually found the more distance supplier, that person confirmed my suspicions and told me that my original sleeve was too big. This trial-and-error / don't know who to trust / paying too much for too little is simply mortifying. You are not complaining, you are asserting your need for help, so keep on pressing your care team for better answers.

georgie1112

Thanks, Carol! Appreciate the support. Have an appointment Dec. 4 with a fitter I trust but it is after I fly. Hoping there will be a cancellation and they can get me in sooner. I am lucky I have mostly good care, but I have learned we need to be our own advocates. But still feel frustrated when I feel dismissed.

If you are having a bit of hand swelling, I do recommend getting a gauntlet. I flew several times with just a sleeve and then on a very long flight, my hand swelled up. Pretty scary. But I have been able to deal with LE so far. For me it means limiting my activities.

Georgie

carol57

Georgie, I do already fly with both sleeve and gauntlet, always. So now I'm starting to think I should get a glove for flying. So frustrating!

georgie1112

Carol,

Yes, frustrating! Am beginning to take horse chestnut which I believe was helpful during the rough period I had with LE in 2007. Always something.

Georgie

Buddhahead

Georgie -- Here's a link to a youtube video of a guy putting on the tape for a knee swelling, but it's the same "fingers" technique as my PT uses for my back and side. http://www.youtube.com/watch?v=SMfEloiZgpY

I have to say none of my docs acknowledged my discomfort and it was really frustrating. The one thing I've read about the KT tape if you have severe lymphedema is to be careful that the adhesive doesn't irritate the skin and cause more problems with possible open skin sores which could be a major contraindication.

As for placement, my PT puts the anchor on the more edema side, my rt. side, up by my shoulder blade and then runs the finger-like strips around my side one at a time. She also puts one lower on my back in my mid back and brings the fingers around to the side. Then there's one down by my hip with the anchor by the front hipbone and the fingers come up toward the bottom of my implant. The key is not to stretch the tape when laying it down on the skin, but just placing it there. I looked some on a search for how-tos but didn't see any that were exactly what my PT does. There is a book I found for sale on it though. Here's an article about it: http://www.lymphedemablog.com/2012/06/04/elastic-taping-in-conjunction-with-lymphedema-treatment/

I just found a picture that more closely matches what I have, but I only have one on my back: http://www.stepup-speakout.org/kinsiotaping_for_lymphedema.htm

I also "activate" my lymph nodes morning and night when I think of it during the day. It seems to help. Here's a video on how to do that: http://www.youtube.com/watch?v=pSD7j8mSVkM

I hope this helps you and anyone else with this. Love to you all!

coraleliz

This is a picture of how I was taped(KT) for my mild truncal LE which you really can't see in the picture. Not a very good picture but I would have never remembered how. I got into trouble with skin issues from the tape. Perhaps I'll try again.