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Binney4

Last year's exercise and lymphedema study, which was published in the New England Journal of Medicine, was seriously misinterpreted by the media. It was about women who already had lymphedema, and it found that with very close supervision by specially-instructed trainers and well-qualified lymphedema therapists, and with the use of well-fitting compression sleeves and gloves, these women could often gradually increase their exercise levels without experiencing flares in their condition. A number of women had to drop out of the study due to flares as well, so it was not a blanket okay on exercise. The lead researcher, Dr. Kathryn Schmitz, has offered a clarification of the outcomes of her study in an effort to correct the misperceptions in the media. You can find links to both the Dr. Schmitz's study and her clarification at the site below (as well as the National Lymphedema Network's Position Papers on Exercise and Air Travel):

http://www.lymphnet.org/lymphedemaFAQs/weightliftingLE.htm

That said, it's a well-establised fact that exercise encourages lymph flow, so exercise is important following breast cancer treatment, with certain reservations. Start low, go slow -- and be consistant. Dr. Schmitz is currently doing a study to look at the preventive effects of exercise in women who have had bc but have not yet developed lymphedema, and she has noted that consistant exercise is far safer than the "week-end warrior" approach.

DO insist on a referral (from any doctor on your team) for a consultation with a well-trained lymphedema therapist for baseline arm measurements, personalized risk-reduction tips, and consideration of a sleeve and glove or gauntlet (fingerless glove) to wear prophylactically while exercising. Here's information about finding a therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

While exercise is good for pumping lymph, it's a two-edged sword because it also increases lymph flow to the arms and chest that can overwhelm our compromised lymph systems and result in arm, hand, or truncal lymphedema. So expert guidance from a PT or OT lymphedema therapist is a wise move, and may save you a lifetime of grief.

Be well!
Binney

LtotheK

Wow, thank you all so much! Am going to print out.

Wanted to update something I've found out:  the tape measurements are considered pretty inaccurate.  In Europe, they use special machines.  The problem is, the tape measure is placed and held differently with each person, and even each time.  I went from 1% difference to 4% in a week with my lymphedema therapist, then my radiation oncologist.  I was freaked, but then read this newer info.

I'm going to take a look here for another referral, mine was sort of mediocre.  But I was sure glad I pursued it.  Makes me so mad, my doc would never have said anything about it.

Binney4

MHP, you're right that tape measurements can be inaccurate, but they're less so in the hands of a well-trained therapist, whose job it is to be consistent. The method of measurement using the machine is called perometry, and it can only measure arms, so it can't detect chest or breast lymphedema. There are some perometry machines in the U.S., but they're wildly expensive so won't be catching on real fast. (Europe has always been way ahead of the U.S. In lymphedema awareness and treatment, BTW, and our current standard treatment methods were all developed in Germany and the Scandinavian countries.)

Currently, lymphedema researchers worldwide are finding that the MOST accurate means of detecting lymphedema is a combination of methods, including tape measurement, perometry (where it's available), and PATIENT EDUCATION about early signs of lymphedema. These include the usual signs of swelling, like noticing tight jewelry or sleeves, or long-lasting indentations in the skin where your bra straps are when you remove your bra. But they also include the very earliest indications of lymphedema, which occur even before any swelling is measurable (even with perometry). Those are patient-reported feelings of tingling, heaviness, aching or soreness in the arm, hand, or chest. It's called "sub-clinical lymphedema," (or Stage 0 lymphedema), and if it's treated at that early stage it's far less likely to progress.

Sadly enough, patients in the U.S. are NOT being educated to be aware of these early indications, and our doctors are too likely to ignore us if we do report experiencing them, so this is one area where we really need to educate ourselves  -- and one another!

Lots of lymphedema research going on, so there's hope for new and better answers for us bc veterans!

Be well,
Binney

LtotheK

One thing I learned the hard way:  in the eyes of the cancer establishment, quality of life issues don't amount to much. Talk about compartmentalizing.  I feel so grateful I landed on this side of the lymphedema debate.  Sadly, there's so far to go, and in the future, I feel pretty confident I wouldn't have even needed the sentinel node biopsy.

Thanks again for the awesome info.  So helpful.