Topic: Don't have LE--therapy consult anyway?
Log in to post a replyJoined: Jan 2008
Posts: 2365
- Posted on: Apr 11, 2008 01:03 pm
I wanted to post this for anyone who is wondering whether she should consult an LE therapist even though she doesn't have obvious signs of LE.
My onco surgeon referred me to an LE-certified therapist who is listed in the NLN resource pages. This referral was a result of my concerns about cording in my armpit after my mast/SNB in Feb '08. I also have some residual swelling/scarring where my drains came through the skin, and a tiny bit of restriction of range-of-motion (or so I thought).
Fast forward: I had my rehab consult yesterday. It lasted 2 hours, and it was one of the most gratifying and beneficial things I've done since I started on this BC journey in January. The therapist was fantastic.
The visit included a thorough history; physical exam with emphasis on my torso and especially my mast/SNB area and affected arm; some sort of electroimpedence study to see if there were hints of fluid accumulation in my arm; full measurements of both arms with calculated volumes; assessment of my range of motion on my affected side; a "Manual Lymphatic Drainage" massage, with instructions as to how it is done so I could do it myself; and a very complete "education" regarding LE prevention.
After all the testing and evaluations, she told me I had no signs of LE at all. She said my risk was low, but not negligible, because I did have 3 sentinel nodes removed (athough no radiation, which would have increased the risk). She said my range-of-motion and scar condition were "fantastic" (love to hear that word!) and she recommended no changes in the measures I was taking.
The therapist answered all my questions, including ones regarding whether compression sleeves should be worn by women who don't have LE. She recommended that I buy a sleeve and a glove, and she suggested a supplier who was likely to have a sleeve that would fit my especially long arm. She said to wear both the sleeve and glove when I was flying, and when I was doing anything involving repetitive arm movements (raking, playing tennis or golf, scrubbing a deck, etc.). She put everything into a computer record so that if I ever do suspect I'm having problems, she'll have the baseline data on me.
This was a very, very worthwhile visit. It will be billed to my insurance, but I haven't met my yearly deductible yet so I'll probably pay for it out-of-pocket. I don't care. I'd do it again in a heartbeat, just to get the evaluation, first-hand instruction, and reassurance.
otter
Dx 1/14/2008, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2-
| Posts 1 - 11 (11 total) | |
|---|---|
|
DoreenF Joined: May 2005 Posts: 1913 |
Apr 11, 2008 02:01 pm
DoreenF wrote:
Otter - that sounds like it was worth every minute you spent with the therapist. I wish that a visit to a trained LE therapist was standard of care ... baseline measurements and LE prevention guidelines are sooo important for each of us to know. I'm glad you'll be getting a sleeve and glove and that she covered when you should wear them. Hoping that with all your new knowledge you'll never have to deal with Lymphedema. Thank you for sharing your experience. Hugs, Doreen Doreen
Dx 4/18/2005, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2- |
|
LindaLou53 Joined: Jan 2006 Posts: 341 |
Apr 11, 2008 04:58 pm
LindaLou53 wrote:
Otter, your experience sounds like the "Holy Grail" of LE initial evaluations. I am so impressed they even included Bio Impedence measurement which is a relatively new method of early detection in patients not yet showing measurable swelling. I am so happy you posted this because it is encouraging to know that good quality lymphedema care can be found. Hang on to that therapist and be sure to pass the info along to any other friends or patients you know dealing with LE or who are at risk.
Life is not measured by how many breaths we take...but by the moments that take our breath away!
Dx 11/21/2005, ILC, 5cm, Stage IIIc, Grade 1, 23/23 nodes, ER+/PR-, HER2- |
|
Binney4 Joined: Aug 2004 Posts: 3536 |
Apr 11, 2008 05:37 pm
Binney4 wrote:
Otter, thank you! I'm speechless with delight! (And that's saying a LOT Binney |
|
gracejon Joined: Aug 2004 Posts: 2392 |
Apr 12, 2008 01:17 pm
gracejon wrote:
I do think that was an exceptional LE therapist. I also think that all women prior to breast cancer surgery should have a consult. I went to a breast cancer center with a team approach at diagnosis and think that an LE therapist should have been part of the team. The team consisted on an oncologist, breast surgeon and oncology radiologist. I do think plastic surgeon and LE therapist coulda, shoulda been included. I hope you will PM me and share the therapist's name (can you in this thread or is that not allowed?)cause I think that I would consider a trip to consult and pay out of pocket with that particular therapist myself. I am very happy you had the consult. |
|
swimangel72… Joined: Feb 2008 Posts: 628 |
Apr 12, 2008 02:07 pm, edited Apr 12, 2008 02:07 PM
by swimangel72
swimangel72 wrote:
Thanks so much for this fantastic info Otter.........I've got cording and range-of-motion problems in my Diep arm (right arm) and also experienced swelling in my abdomen and right foot while in the hospital, but none of my three doctors have mentioned any LE therapy to me. I've been doing my own exercises with my arm - and the foot swelling went away on it's own, but I worry that I am not doing it correctly. I looked on the www.lymphnet.org web site, but there aren't any therapists close to where I live. Do you have another web site that has a search engine where I can find one.....or shall I just pester my doctors for their recommendation? Dx 2/5/2008, IDC, <1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2+ |
|
otter Joined: Jan 2008 Posts: 2365 |
Apr 12, 2008 03:29 pm
otter wrote:
Swim, gracejon, and all-- I complained here that I had not been able to find any local LE therapists. I guess that constitutes pestering Binney. :) Anyway, Binney posted a more complete list of therapists than the one I had found. It turned out that the rehab center & therapist my surgeon chose were on the main Lymphedema Network list. I just hadn't thought about going there because it's a really huge rehab center and it's quite a drive from home (same direction & distance as my cancer center though). My surgeon told me she thought I should go there because they had an outpatient treatment service that specialized in lymphedema; and she had a great deal of respect for the credentials and abilities of those therapists. The drive would be an issue if I had to go back for treatments, because they could entail daily visits for awhile. The therapist told me if that happened, she would try to find someone closer to where I live. It's a trade-off, though. The nearby people aren't as well-qualified or well-equipped, and they don't focus so much on LE in their practices. So far I don't have to worry about that, thank goodness. otter P.S.: I did need a referral to go to the place I mentioned. It's not a primary care facility--it's a referral center. I don't think insurance is required, but I do think you need a doctor to call for you. Dx 1/14/2008, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2- |
|
Dejaboo Joined: Mar 2008 Posts: 1010 |
Apr 12, 2008 03:44 pm
Dejaboo wrote:
Thanks for your post Otter. It really does make sense to see a LE Therapist before! Dx 3/7/2008, IDC, <1cm, Stage I, Grade 1, 0/1 nodes |
|
swimangel72… Joined: Feb 2008 Posts: 628 |
Apr 12, 2008 04:08 pm
swimangel72 wrote:
Thanks Otter for your help - I found another web site that has a search for North America -www.clt-lana.org/ and found someone that is near all my other doctors, so you can be sure I'll get a referral! Dx 2/5/2008, IDC, <1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2+ |
|
Binney4 Joined: Aug 2004 Posts: 3536 |
Apr 12, 2008 06:36 pm, edited Apr 12, 2008 06:37 PM
by Binney4
Binney4 wrote:
Great, swimangel! The LANA site lists only fully trained LE therapists. You can also use the Therapist Locator at www.mylymphedema.com. Just follow the links to the graduate lists of four fully-certified LE therapy schools. (You may find more here who are not listed with LANA. That's because they have to pay to be LANA certified, but the LANA credentials are not required anywhere in the U.S. to practice LE therapy, so not every fully-trained LE therapist is LANA certified, but every LANA therapist is fully-trained. Hope that made sense!) Eventually I hope LANA certification will be legally mandated throughout the U.S. -- sure would make it easier to find a therapist! Do let us know how it goes! Binney |
|
otter Joined: Jan 2008 Posts: 2365 |
May 16, 2008 12:45 am
otter wrote:
I am bumping this because of a disappointing LE evaluation described in another post. otter Dx 1/14/2008, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2- |
|
swmmom Joined: Oct 2007 Posts: 40 |
May 16, 2008 10:36 am
swmmom wrote:
Otter, that is one exceptional LE therapist! I wish I could say the same. I had a one hour time slot when I made the apt, but the entire hour only included wrapping and taking measurements, and oh, listening to her talk about how smart her daughter is! |
!)