Any special concerns for treating truncal LE after diep?

Carol, I know that others in this group have had diep--I think NatsFan/Mary did. Perhaps you could pm her.

Here's a general link to truncal LE:

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Sorry no one has answered this important question. Hopefully they'll come along soon.

Let us know what your PS says.

Kira

Carol - I had S-GAP reconstruction in NOLA and I was told at 8 weeks post op that I could start to wear my compression cami's. I've been wearing them for 1 week without problems. Many PS don't recognize trunk/breast LE, hopefully, yours will! Either way you should ask for a referral for an evaluation by a LANA certified  LE therapist.

Carol - I had DIEP and have arm and truncal LE.  My truncal was not dx till a year after my DIEP, so I was fine to wear whatever garments I wanted at that time.  I thought I was just getting fat, but after 2 weeks of work with my LE therapist, I lost 5 pounds and 2 inches around my middle because her treatment moved so much lymphatic fluid out. 

Just make sure that your LE therapist does a lot of clearing of the truncal area and teaches you manual lymph drainage to do the same.  Also, ask your LE therapist about the Lebed series of exercises.  Since I started doing the Lebeds and MLD religiously, my truncal has been pretty much controlled.  My LE therapist also gave me some scar stretching exercise to do across the ab scar - mine was very tight, and she said that loosening it could help the lymphatic fluid flow.

That said, if you're just 10 weeks out, you still may have some surgical swelling.  I bought some velour workout exercise outfits (stretchy pants and hoodie jackets) and wore those to work and everywhere else for at least 3 months after my DIEP - I couldn't fit into my pants and they were uncomfortable if I did manage to zip them up.  Eventually the swelling did go down enough where I could get back into regular clothes.  

Good for you for being aware and pursuing this!

I heard of compression shirts around 10 weeks post-DIEP.  I have sleeves, but tend to prefer to the shirts.  Also, kinesiotape is a helpful addition to MLD.  Your transplanted tissues have created their own longterm blood supply by week 6.  You're good.  The only down side is that there is no lift to compression shirts.  I'm glad you're here and getting good answers.

Carol, IMO she's just plain WRONG.

Have her read the article that is linked on the page.

I'm also going to put in an "ask the expert" from bc.org.

When there is LE, the entire quadrant--the whole upper front, arm and back are "at risk" but it can manifest itself in just one part of the quadrant. 

Have a look at that article: it shows women with LE in the breast,, the trunk, the axilla--and they DO NOT have to have it in their arm.

Good for you to interview her, because if she thinks LE has to be in the extremities, then what about head and neck LE, genital LE?? I've seen both. 

I've also been to "well trained" but unfortunately, uninformed, dogmatic and just plain wrong, LE therapists.

Avoid this woman. 

Yes, you can have it in your trunk and arm. Or just arm and no trunk. Or both. 

ARGHHH

And LE is edema: it's edema with lymphatic fluid. 

http://www.breastcancer.org/tips/lymphedema/ask_expert/2008_04/question_07.jsp

Breast lymphedema possible?

Page last modified on: August 25, 2008

Question from Amy: Does lymphedema only occur in the arm or can it be in the breast as well?

Answers -Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : Absolutely! Not only can it be in the breast as well, it can be exclusively in the breast and chest wall, even if it does not appear in the arm. So we need to recognize that breast edema and chest wall edema exist and should be treated.

Jennifer Sabol, M.D., F.A.C.S.: As a surgeon, I probably see it more acutely than most and have a more difficult time getting other physicians to acknowledge that there is such an entity as lymphedema of the breast which is actually quite uncomfortable for some patients as well as alarming, because it is difficult to ask for treatment for swollen breasts. I think maybe you can comment on how you manage patients like this.

Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : I would say, first of all, recognition is part of the key. I believe anecdotally that I am seeing more frequency of breast and chest wall swelling - lymphedema, if you will - now with the sentinel node biopsy, as we are removing the direct drainage pathway out of the breast. Unfortunately, it is going far underrecognized. Treatment for breast and chest wall lymphedema is analogous to the way we would treat the arm, meaning that the patients would require lymphatic drainage, compression, therapy, exercise, and skin care. Many of these patients will require custom fit or near-custom compression bras.

Kathryn Schmitz, Ph.D., M.P.H., F.A.C.S.M.: I would say this is an international problem. I was at the Australasian Lymphology Association meeting in Perth in March, and this issue of seeing more breast edema was a theme there. It seems to me that the compression garments and treatments available are not as advanced as they are for arm edema, the compression garments in particular

.
Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : I would agree with that to an extent. I think there are excellent compression bras that exist. I agree with you that we are as not highly evolved in this area in recognition, treatment, and management as we are with the arms.

Jennifer Sabol, M.D., F.A.C.S.: I would add one note of hope, and it is sort of anecdotal. I think this is one of the few times that lymphedema does have a tendency to regress. It's probably due to the acute injury of the radiation therapy. Breast edema does tend to go down over time, though it may not disappear. It is a very slow resolution of the edema and it's almost never complete. I generally tell patients to expect a very slow, ongoing improvement, even over 2 to 3 years after their radiation therapy, until they reach a stable plateau. I'd be curious if you two have found the same sort of better overall prognosis for the breast edema.

On Wednesday, April 16, 2008, our Ask-the-Expert Online Conference was called Preventing and Treating Arm Lymphedema. Kathryn Schmitz, Ph.D., M.P.H., F.A.C.S.M.,Nicole Stout Gergich, M.P.T. C.L.T.-L.A.N.A., and moderator Jennifer Sabol, M.D., F.A.S.C. answered your questions about ways to prevent and manage lymphedema.

She's just plain in error.

Kira

Carol, I literally went to 5 different, well trained PT/OT's and had issues with all of them. And I"m not that hard to please! As one of the heads of a major training school said: "I can train them, but can't supervise them out in the community."  My LE therapist is a LMT (massage therapist) that I pay out of pocket, but is worth it.

It's unfortunate that this woman doesn't understand truncal LE--it does sound like she would do MLD to reduce the swelliing, but if she's going to deny your reality and mis-diagnose you over the phone, it sounds like she's not the one for you.

I hate to hear that you have to travel long distances, but if you find someone good, it makes all the difference.

Binney's initial therapist--LANA certified--made her LE spread. KMMD just got a new person who is so much better. Unfortunately, most LE therapists work without any real physician supervision, and their quality and knowledge is variable. Not to add the constraints of insurance--she's probably hung up on documenting LE to get reimbursed, and it's the stupid "2 cm rule"--if one arm is 2 cm larger it's considered LE--on absolutely no scientific evidence, but it's become the gold standard, because it's easy.

Luckily, I found my LMT rather quickly, but she wanted a PT involved because I had cords, and then I saw a whole bunch of them. The final one was okay, but kind of rigid. Five--it was horrible. And one was at a major Harvard teaching hospital, and started out good, and then things got weird.

Hang in there.

Kira

Carol, in Chicago, Joesph Feldman is a doctor who specializes in lymphedema, and he is the head of the LANA board (it's really just a paper test), Lago has seen him.

It's a resource, if you need it

http://www.northshore.org/apps/findadoctor/doctor.aspx?pid=7165

Carol, I was clueless, and Binney had to literally write to me daily, to help me figure things out. I still lean on her heavily. And this board.

Kira

I have lymphedema on the side of my diep breast and down the trunk, as well as arm.  I was so relieved to MEET someone with LE when I was trying to figure it all out and the docs were insisting it was not LE.  The OT I saw was LANA certified and has LE herself - in her neck. She told me you can get LE anywhere the lymphatic tissues have been compromised enough not to work well, usually due to surgery, but even from an injury.  People get LE in their toe, for crying outloud.  Her neck LE was caused by breast reduction surgery years ago when they were doing massive incision lines, which disturbed a lot of her lymphatic flow.  

Carol, from the BMJ, a free download--this was from Australian women--sounds familiar

http://www.bmj.com/content/342/bmj.d3442.full 

Unmet needs were found:

Current needs (domains)
Information and support (11 items) (variance 49.1%, Cronbach's α 0.95, mean (SD) score 0.61 (0.86), frequency 35.5%)
To provide family members with information about lymphoedema

To be fully informed about lymphoedema support groups in the area

To be given information (written, diagrams, drawings) about aspects of managing lymphoedema

To be adequately informed about the treatment options (benefits and side effects) for lymphoedema before you choose to have them

To be informed about alternative treatment for lymphoedema

To be informed of the availability of lymphoedema treatment centres

To be given a full explanation of those tests and treatments for which you would like explanations

To receive consistent lymphoedema treatment information that does not vary between sources

To be fully informed about the causes of lymphoedema

To have access to vocational assistance/counselling for help in adjusting to having lymphoedema

Coping with frustration with the lack of assistance in dealing with the lymphoedema

Body image (8 items) (variance 7.3%, Cronbach's α 0.96, mean (SD) score 0.39 (0.73), frequency 25%)
Coping with embarrassment caused by the appearance of the affected arm

Coping with high levels of self consciousness because of lymphoedema

Availability of clothes to hide arm

Accepting changes in your appearance

Coping with anxiety when going out because of the appearance of your arm

Coping with the loss of confidence because of lymphoedema

Avoiding social situations because of lymphoedema

Coping with reduced self esteem because of lymphoedema

Health system (7 items) (variance 4.7%, Cronbach's α 0.96, mean (SD) score 0.90 (1.14), frequency 41.2%)
Avoiding social situations because of lymphoedema

Having doctor(s) willing to treat lymphoedema

Having doctor(s)/healthcare professionals willing to follow-up your lymphoedema treatment

Having doctor(s) who are fully informed about lymphoedema and its associated problems

Having healthcare professionals (such as nurses) fully informed about lymphoedema

To have competent, up to date treatment

Non-recognition or coverage of lymphoedema by Medicare or private health insurance

In the discussion:

Women perceive that lymphoedema is not considered as a serious illness by their doctor and other health workers, a finding previously noted in smaller studies.13 19 27 34 While women might have continual review for cancer recurrence by their breast surgeon three to five years after diagnosis, they might not return to them for issues related to lymphoedema. Women will also be under the care of their family doctor, and it is from this doctor they might seek advice regarding their lymphoedema. Because most women will have minimal overt signs of swelling at this stage, the symptoms they experience, including shoulder stiffness and ache, might be dismissed. Yet it is currently believed, although not proved, that intervention at the earliest opportunity is the most effective. To address the needs of women with lymphoedema and perhaps prevent progression, it is important that mild symptoms are not dismissed and that women are referred to the appropriate specialist. 

Carol, I'm seaching for it, because I've seen "validated surveys" being used in research--and ideally they'd be used in clinical practice. If I get one, I'll post it.

The plastic surgery abstract did imply that mx set the patients up, not the reconstruction--it's not published that I know of.

I'll email Mei Fu, I'm pretty sure she sent me a survey a while ago, I just can't find it.

In any medical condition, history is just as important as physical exam--why do we make LE a disease that can only be confirmed by exam, when there are no clear diagnostic criteria and swelling, by definition in stage 0 and 1, will come and go, and if you treat it, it will reduce. So, when the 2 cm swelling is reduced, do you no longer have LE? If your trunk wasn't swollen because you wore compression, yet have experienced it, isn't it real?

Kira 

Carol, I'll write to Jane Armer to see if I can get the LCBQ

http://www.ncbi.nlm.nih.gov/pubmed/14639083 

Nurs Res. 2003 Nov-Dec;52(6):370-9.
Predicting breast cancer-related lymphedema using self-reported symptoms.
Armer JM, Radina ME, Porock D, Culbertson SD.
Source
Sinclair School of Nursing, Ellis Fischel Cancer Center, University of Missouri-Columbia, 65211, USA. armer@missouri.edu
Abstract
OBJECTIVES:
This study aimed to determine the accuracy of using self-reported signs and symptoms to identify the presence of lymphedema as well as the usefulness of identifying clinically measurable lymphedema on the basis of certain symptoms elicited by the Lymphedema Breast Cancer Questionnaire (LBCQ).

METHODS:
This analysis used logistic regression to identify symptoms predictive of differences between symptom experiences of participants belonging to two distinct groups (study A): those with known post-breast cancer lymphedema (n = 40) and those in a control group of women with no history of breast cancer or lymphedema (n = 40). Symptoms in this model of best fit were used to examine their relation to limb circumferences of breast cancer survivors in a second independent data set (study B; n = 103) in which a diagnosis of known lymphedema was not previously determined using symptom experiences.

RESULTS:
The presence of lymphedema was predicted by three symptoms comprising a model of best fit for study A (c =.952): "heaviness in past year," "swelling now," and "numbness in past year." Using this model, prediction of absolute maximal circumferential limb difference (i.e., >or=2 cm) in study B showed that "heaviness in the past year" (p =.0279) and "swelling now" (p =.0007) were predictive. "Numbness in the past year" was not predictive. However, those with lesser limb differences reported this symptom more often.

CONCLUSIONS:
The findings suggest that changes in sensations may be indicators of early lymphedema or other treatment-related sequelae that must be assessed carefully at each follow-up visit and over time. A combination of symptom assessment and limb volume measurement may provide the best clinical assessment data for identifying changes associated with post-breast cancer lymphedema.

Here's a link to the Jane Armer article: 30 months of follow up, comparing methods of assessing LE, and symptoms and 10% volume change were the most conservative methods

http://www.lymphormation.org/journal/view-journal-article.php?articleId=84