NLN Research Roundup--Questions we should ask?
Comments
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Kira~
Do you mind sharing the citation to Dr. Chen's literature she has written based on her data?
Thanks always!
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Pinkheart, try this link--it got me to the NLN's LymphLink article (a pdf download) all about Dr. Chen's research; the article is a recap of her research findings to date. http://www.google.com/url?sa=t&rct=j&q=&esrc=s&frm=1&source=web&cd=6&ved=0CEkQFjAF&url=http%3A%2F%2Fwww.lymphnet.org%2FmembersOnly%2Fdl%2Freprint%2FVol_24%2FVol_24-N2_Autologous_Lymph_Node_Transfer.pdf&ei=eRZOUMPKFbT02wW5y4CoCw&usg=AFQjCNFEg29PccM3-vQ6Vuf11_9e14XibA&sig2=RzOfQWdR5_hY9j72fDMWaw
At the NLN conference, there were several presentations about surgical solutions to LE. Unfortunately, except Dr. Chen's presentation, the discussions on node transfer provided anecdotal evidence only, although those anecdotes were certainly compelling stories that make you want to cheer for the prospect of what will develop in the years to come.
Carol
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Thank you Carol. Not sure why - could not get link to work.
I will be asking if my surgeon will be pooling his data with other doctors, I know they are tracking, and has worked with a special group of docs around the country on past research studies combining their patients in studies.
I know there are no guarantees. So far with his patients, LE remained the same, improved, and some say cured (but without long term studies - who can really say). I am willing to take a shot at it since insurance is covering and already scheduled for Stage 2 of my recon surgery though LN transfer does add 2 more hours to surgery time and probably recovery. My surgeon has worked with Dr. Becker as well. I find this treatment fascinating and HOPEFUL.
Well . . . off to my appointment with my new LE therapist!
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Just to let you know I am reading every post, passing them on to my Yoga teacher, and I so much thank all of you for sharing what you have learned with us!
And please, information on any freebees you got! -
Crystal, one freebie I received as an LSAP participant was a swell spot--and it's in the shape of a ribbon, i.e. a blue ribbon to symbolize breast cancer related LE, similar in shape to the pink ribbon symbol for Komen. Now, I'm not sure which body part this particular swell spot would help--but it's a good visual to take to BC support groups when explaining LE and its treatment. Also, Solaris gave out some wonderful posters showing the lymphatic system, which I'll hang onto for programs I might present. So my freebies were not so exciting! I'm not sure what Becky came home with. I do know that therapists were able to pick up tons of sample garments, or fabric samples, etc. so they have some items to evaluate and to be able to show to their patients. That is a wonderful outcome for those therapists and their patients!
Oh, forgot--I have a T-shirt, courtesy of the LymphTracker folks. It says:
Lymphedema - \ lim(p)-fi-de-ma\
Noun
1. the abnormal accumulation of a protein rich fluid in the interstitium that causes inflammation and a reactive fibrosis in the affected tissue
2. a disease that affests millions of people world-wide
3. a disease that CAN be treated!
4. something tht needs a helpful app to better manage...
(and then there's the lymphtracker web address)
So, since I'm in the gym in my lovely beige sleeve every week, I guess I should start wearing the T-shirt to explain things!
Carol
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Carol--Somehow my lymphtracker water bottle never got home with me. I guess it was left in hotel room. I did get the ribbon swell spot but too small for where I use my Solaris swell spots. Free juzo antibacterial socks. Lots of measuring tapes! A black cowboy hat (not sure how it relates to LE) given at Juzo reception. Carol did not want hers and I gave it to my therapist. She wore it when we arrived and her husband was beginning to wonder if we had actually attended a conference or just partied. Scarves with Juzo and Jobst printed all over them. The Solaris posters that have a great picture of the lymphatic system. Many pens.
My therapist got a lot of freebies such as Farrow gave her a sample of every color and type of their garment fabrics.
Now to find a place to put it--or I will give out some of it at support group meeting.
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Gosh, I missed all the measuring tapes!
But I did take lots of notes, and I'd like to share those with anyone who is interested. I have placed them in a hidden folder on the Lymphedema Speaks website. If you click on the following link, you should launch a download of a pdf document that contains my summary of what I heard, saw and learned at the NLN conference.
http://lymphedemaspeaks.com/wp-content/uploads/2012-NLN-Conference-Notes.pdf
Please keep in mind that I did my best to watch, listen, think, and type all at the same time, but I just know that I may have made mistakes, taken comments out of context, etc. So think of my notes as a 'best effort' and not necessarily the full, or the fully accurate recounting of what was presented. Also, I have some of my own comments after some of the session notes, sometimes explaining what others at the conference were saying about what was presented, and sometimes adding questions that presenters' comments prompted me to wonder about.
If the link does not work for some reason, of course let me know!
Carol
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Thanks so much for posting your notes! KS1
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Well, for whatever they're worth...you are most welcome!
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Just as a side note to the freebies listed above, if anyone is planning an educational event for a BC support group or nurses group (or whatever), fabric samples and/or garment samples are available from many of these companies by emailing them with your event information. You can also get promotional materials and educational booklets. Lymphedivas has extensive materials showing their styles. Juzo offers a free patient-education booklet. Jobst has educational materials for professionals. And of course the ReidSleeve folks offer free alert bands. Some of them will also send tape measures if you ask.
Binney -
Gosh, this evening I thought of one more random discussion point from NLN that I wanted to share. Dr. Marga Massey has stated (on her website) that the lat dorsi reconstruction poses serious LE risk, so she does not believe in doing it. One of the NLN presenters, Dr. Alex Munnoch, came to the LSAP breakfast one morning. He is a microsurgeon in the UK and does most types of reconstruction after breast cancer, as well as that special liposuction treatment for LE. I asked him if there was evidence to suggest that any of the reconstruction approaches has an impact, positive or negative, on LE risk. I was surprised when he said that there was little documented evidence, except in the case of the lat dorsi reconstruction, which has been shown to reduce LE in delayed-recon patients who have LE prior to the recon surgery. Dr. Munnoch was not aware of Dr. Massey's website discussion and was surprised to hear of her interpretation of the risk of lat dorsi flap surgery. He said that moving 'fresh' lymphatics into the area is what helps to improve LE. He said he has reservations about the lat dorsi recon for other reasons, mainly the muscle impairment, but not reservations related to LE risk. He did not offer up a study, and I might well send him an email to ask for that information. I found this interesting, and I think all that it proves is that more study on the recon/LE relationship is needed.
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The feedback from all of you regarding the NLN conference has been wonderful. Although I envy you the chance to be there, the ability to read what happened translated and delivered in understandable chunks is truly the next best thing. Carol, your written notes have given me quite a lot to think about, but so has everything else you have all told me. Thank you thank you.
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Thank you, Quail. It truly was an honor to be able to attend, and I wish everyone could have that experience.
This morning I was tidying up my pile of papers from the NLN conference and I found something I'd forgotten about. Klose Training and Consulting, which provides CLT training, handed out a flyer announcing a series of free online 'edu-sessions.' There are three sessions available, with more planned. These are apparently videos with downloads such as PowerPoint presentations and handouts. Session I is called Reimbursement for Compression Therapy Products. Session II is called Lymphedema Medicare Coverage and Reimbursement, presented by our beloved Bob Weiss. Session III is caled Medi-USA Product Overview. The flyer was distributed to the conference attendees, mostly therapists of course, but there is nothing on the flyer to say that patients cannot see these programs. Under 'coming soon' they list a Solaris medical product overview, a Jobst product overview, and Complete Decongestive Therapy for Lymphedema. The flyer says to simply go to their site- www.klosetraining.com and fill out a sign-up form; then you will be emailed a user name/password to access the online sessions.
I'm not likely to get to this yet this week (my day job is tugging strongly at me!!), so if anyone investigates, gets access credentials and reviews a session or two, please report back here!
Carol
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Carol and Becky,
Thank you so much for reporting about the various events you attended and for keeping us so well informed about what you saw and heard. You have done a fantastic job "deciphering" complicated information and making it accessible for us.
Many of us wished they had been there too, but in fact, we certainly got more out of the conference reading your reports. All of us appreciate and value the time and efforts you invested in this.
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Carol, I just read all your notes and perhaps for the first time ever i feel informed about LE. I feel you gave us enough information to know the flavor of each speaker.
Carol and Becky, I thank you so very much for going and sharing all of this information with us.
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Crystal, those speakers really are in our corner. Becky and I are required to write a short essay about our experience in the program, to be put in the NLN newsletter, and that's what I wrote about--how struck I was by the dedication of these people. They have their disagreements on how to move LE diagnosis and treatment forward, but they are sincere in having our interests at heart. One of the LE specialist doctors told us that it's challenging to be an LE specialist, because by and large, surgeons and specialists earn money by charging for procedures--but there are no procedures to charge for here. The researchers won't get rich, because there's no pharmaceutical money chasing a cure for LE, so they do what they can to find grant money and work hard to make it stretch. The lymph node transfer and other surgical-cure surgeons may some day do well with their surgeries, but for now it's not obvious how to get the work paid for, and there will be a long road to turning those surgeries into common and widely accepted LE procedures. Then there are all the therapists who presented and those who came to learn: they're spread thin, as we all know, and they struggle to get properly reimbursed. And yet--despite all these challenges to making a living from their work--they are all there for us!
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Carol ~ regarding your previous post regarding Dr. Massy's opinion against Lat Flap as a cause for LE -- did she present/attend the NLN?
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Pinkheart, Dr. Massey was there, with a booth in the exhibit hall. I also saw her listening attentively in the plenary sessions as the speakers presented current information about LE surgery, but she did not speak. Dr. Munnoch's thoughts about lat dorsi recon came in a small group discussion in response to my question about LE risks with recons in general. Dr. Massey was not part of the group, so of course she did not have an opportunity to respond or comment. I think there remains much unknown about LE and recon, and the diversity of our experiences here tell us that even among women with the same recon surgery, other factors are at play to make such big differences in who gets LE and where we get it. So many LE research needs!
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Thank you Carol & Becky! I've been following your reports first from Ohio & now from NLN. Thank you both! Carol - just read your notes. Thank you for posting them. Wow!
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Carol, your effort to report back to us the info you learned at the NLN conference is greatly appreciated. I'm amazed at your level of notetaking and your energy to transcribe it here so quickly upon returning. It's terrific.
Perhaps I am uninformed, but I don't understand why a lat dorsi recon would help LE. Just muscle and skin/tissue are moved, not any nodes, is that right? At Dr. Massey's presentation in DC, she talked about being opposed to this procedure because of it's change in muscle structure/functionality. She felt the same about TRAM with the compromised ab muscle. I believe the other reason she was opposed to the lat dorsi procedure is because she thought the moving of the muscle from back to front disturbs/disrupts the lymphatic drainage path. She also is not in favor of the autologous tissue transfer that uses the inner thigh (TUG) as it is a risk for leg LE since nodes are contained in that area. I think I remember all this correctly.
I understand that a muscle-free DIEP can include the transfer of nodes that may improve LE, but I find it hard to believe that a lat dorsi procedure would. Perhaps I don't know enough about this procedure to form an accurate opinion.
When we were at the LE Summit in Ohio in August, I asked the first speaker (Electra Paskett?) whether they were also identifying which patients had reconstruction and the type of reconstruction while they are trying to track LE. (I heard several participants behind me say it was a good question.) I really feel this plays a role in why some women develop LE or increases risk for developing. I wish we could look back and compare our stats against countries where more women do not elect recon or have not had as much access to recon and see if our incidents of LE have increased disproportionately as more women here opt for recon. I know, we're still trying to glean existing articles on LE studies to produce more accurate statistics about LE in general, and the element of several surgeries to complete recons and the complexities of specific procedures introduce a ton of variables, but I still wish they could include this in the data collected as we move forward. I am curious as to whether more women are getting LE due to implant issues (take up space in chest and create tightness and scar tissue/capsule around implants, both of which may block lymph flow) or some of the flap surgeries such as DIEP (creates scars on abdomen that block the flow of lymph to the inguinals). -
Tina, You raise very thoughtful questions! Dr. Munnoch did say that the LD recon has been known to improve pre-existing LE, but he did not say anything to suggest that a study had been done--so it's anecdotal. I have his contact info, so I do believe I am going to send him an email asking if he is aware of any studies, and if not, what in his professional view it would take to get one going.
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Hi, Carol. I was composing some further thoughts, and I see you just responded to my comments from last night. I realize that while all of these folks are in our court, there are differing views on LE, as you guys definitely experienced at the conference. I understand that professionals may form some of their opinions based on personal experience and the focus of their own practice. I went back and looked at my notes from Dr. Massey's presentation. She talked about all forms of recon, starting with implants, then got into lat and tram. Does not support use of implants or muscle. Thinks implants are bad, 50% failure rate within 7 yrs, without rads. With rads, even higher (this is FDA info that's been out there). What was disturbing is when she described exactly how much muscle is cut to insert tissue expanders. I almost fell out of my chair. The talk primarily involved LE therapists, so her focus was definitely on helping them better understand the patients' bodies they are treating who have developed LE after various forms of recon. She is very much focused on not performing surgeries that cause LE or close the door on other options if one procedure fails. If someone has rads, and PS does implant and it fails, they will often do lat flap. She said this is especially bad for LE, as lat muscle has been moved, and now there are scars on front and back of trunk that reduce ability to effectively do MLD.
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Tina, I am going to use that last sentence to help form the question I send to Dr. Munnoch. He's an interesting one to ask about this, because he said that in his practice, they do all kinds of reconstruction, giving the patients a comprehensive pros/cons for each. Like Dr. Massey, he also knows a great deal about LE (maybe less than she does--he didn't go to the trouble of becoming a CLT). So he should be able to give a well considered answer to the question...if he responds. I'll keep us posted here.
Carol
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Tina, I used to read operative notes about finger dissecting the pectoral muscle to create the space, and it was nauseating.
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Carol and all, I went to the Klose site and signed up for their edu-session. Had no trouble with access, and reviewed one of the courses last night--an intro to LE treatment by Guenter Klose. Very up-beat, well-organized, even enjoyable. I'm not sure who the audience is for this. Too basic for CLTs, fairly technical for patients with little medical experience. On the other hand, as an introduction to what happens during treatment (MLD, wrapping) it's quite useful. Might take some of the anxiety out of that first LE therapy visit.
At any rate, I do hope some of you will jump in and check out these sessions and let us know what you think. I'll be viewing more of them when I can grab some time.
Thanks, Carol, for the heads-up!
Binney -
That's wonderful, Binney! I have not taken time to look at them yet, but now that you've reported about what you saw, I really will find some time in the next few days.
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Hi,
I have a question regarding the Step Up, Speak Out lymphedema web site. (SUSO)
I have had severe AWS-axillary web syndrome/cording since a few weeks out from my 7.5 hour BMX, ALND (19 nodes removed) surgery, and immediately followed by a 2.5 hour breast reconstruction with direct implants (that have since failed), for a total of a 10 hour unusually long surgery. I started PT 3 weeks post op (needed to wait until 6 drains were out), then radiation started 8 weeks post op (had to wait until PT could get my arm to lift back far enough over head for beam to target breast.) Everyone was clueless and never mentioned AWS -- except the PT-CLT. Don't have to stand on my LE soapbox here, because you all know that many breast surgeons, plastic surgeons and radiation oncologists are clueless about or understand the seriousness and prevalence of LE -- let alone its bitchy friend AWS-Axillary Web Syndrome.
I haven't reviewed the SUSO site for about a year, and just went there again today. I noticed in the Highlights column on the left that the following statement is now in bold letters: "... have concluded that axillary web syndrome is a risk factor for lymphedema." Further down, #3 states "Cording is associated with the risk or development of lymphedema." (maybe it's always been there but I missed.)
Do you know of any additional studies or journal articles that are more recent that you could direct me to relating to this (personally experienced) fact about AWS and LE?
Have any of your surgeons, rad oncs, etc. made these same statements about correlation between AWS and LE?
Perhaps Dr. Corrine Becker or her surgeons that have trained with her?
Also any new articles stating that whether cording is just scarring, or is lymphatic scarring?
I'm going to copy this and post on a few other threads. Thanks everyone, I appreciate your feedback and experiences!
Here is link to SUSO, to the AWS page:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
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Today is my one year anniversary of my LNT-lymph node transfer surgery that Dr. Kline, Charleston, SC did during my Stage 2 natural breast reconstruction surgery.
I'm so happy to report that lymphdema in my arm has not occured since! Fingers crossed this is good for life. I will still wear my sleeve to fly or drive long distance. I have a hardly used LymphoPress machine paid for by insurance ($7,000?) that I plan to donate to someone in need. My PT-CLT said I should hang on to it for a few years so will do that.
Wishing the very best outcomes possible for all other LE patients!
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