new here

kmb4, welcome! Sorry for the reason you've come here, but glad you found us. On the site hugz4u mentioned above, there's a page especially for healthcare providers--nurses, doctors, everybody--that was written for doctors by a doctor with lymphedema. A printer-friendly version is available so you can copy it off and take it to your occupational therapist if you'd like. It's here:

http://www.stepup-speakout.org/essential%20informa...

A few paragraphs down on that page (in section 3) says this:

There is no diagnostic standard for diagnosing lymphedema: common methods that are used are inter-arm circumference discrepancy: measure the arms at several points and compare the circumferences, every 4 cm is the standard method of calculating limb volume. While the 2 cm difference has been clinically adopted as "the gold standard" for diagnosis, it is a clinical standard that began with one clinical trial and became widely adopted. The sensitivity and specificity of the "2 cm rule" are unknown. So, while a 2 cm size discrepancy—at any one point on the two arms—strongly suggests lymphedema, due to fibrosis and "patchy" distribution of disease, patients can have lymphedema without a 2 cm inter-arm circumference discrepancy. A.W. Stanton, PhD has published that the clinician must be alert to early changes in the limb: obscuring of bony or tendon landmarks, and that a 2 cm discrepancy is not required to diagnose lymphedema. Link to Stanton, et al, Diagnosing Breast Cancer-Related Lymphoedema, full article

Http://britishjournaloflymphoedema.com/journal/0101_arm.pdf

Early lymphedema, stage 1 or 0, is spontaneously reversible and the swelling is highly variable.

More sophisticated measures of lymphedema are perometry—a laser method of assessing volume, cylinder water volume displacement, and a less sensitive and specific method of serial bioimpedance values can be utilized to measure and with history and exam, confirm the diagnosis of lymphedema.

So, definitely get any member of your healthcare team to write you a referral to a well-trained lymphedema therapist pronto--early intervention means it's much easier to get and keep in control. Here's how to find a well-qualified therapist near you:

http://www.stepup-speakout.org/Finding_a_Qualified...

Please keep us posted, and tell us how we can help!

Gentle hugs,
Binney

kmb4, follow your instincts & see an LEPT now! Do not let your OT convince you to wait. Binney is our resident LE expert & Hugz is another wonderful source of both information & advice. If they are encouraging you to see an LEPT, you should do it as quickly as possible.

I am proof that early intervention can reverse LE.

My RO's office provided me with an LE referral as soon as I completed radiation last year. I learned how to do MLD & was given about 30 minutes of stretching & strength exercises to do daily to get the lymph moving & to get my arm & shoulder back into shape.

I had a single episode of swelling in July of 2017 (like you, I was on vacation in Colorado) & I immediately contacted my physical therapist by email. She made several suggestions (avoiding salt, doing MLD twice each day, drinking lots of water, etc) & set up an appointment for another PT session upon my return. I followed her instructions to the letter & met with her after my trip. She ordered my sleeve & glove & made sure they fit properly & that I knew how to don them. She thought my LE was sub-clinical at that time & saw only a minimal difference in my arm measurements (my affected arm was my dominant one so we had expected that).

Several months later, I had appointments at a large research/teaching hospital for a second opinion. I met with both a survivorship oncologist & the head of their LE management center. I was told that I showed no evidence of current LE or LE damage at that time. They agreed that the measurements & information in my records indicated a single episode of LE swelling but they both felt my LE had been reversed.

I credit my physical therapist & her immediate intervention with getting me to that point. I continue to do my PT exercises daily & I lift weights (building up very gradually to my current levels) & get significant aerobic exercise every week. I also follow all the recommendations you'll find in StepUp-SpeakOut & in the LE discussions on BCO. Maybe I'm just one of the lucky ones, but perhaps you could be too. Good luck!