Topic: Breast lymphedema, anyone?

Good morning, Nicole,

Ugh! Sorry about the diagnosis, but glad they identified it and can get you into therapy promptly. There are lots of us here with breast/chest lymphedema. It can even extend to the side and back, but prompt therapy and good self-care should help you contain it and end the cycle of infection and inflammation.

Here are a couple of pages for you to look over so you'll know what to expect, what questions to ask, and a bit about how you'll be dealing with this. And of course we're all here to give you encouragement and a place to grouch or rage or just ask questions!

First, a page about breast lymphedema (which is actually called "truncal lymphedema," though that always sounds to me like something that could only happen to an elephant).

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

And here's one about making sure the therapist you see is well trained (because they all aren't!):

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

And finally, one about what to expect from the Manual Lymph Drainage (massage) part of the therapy:

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

Lots new to learn, but learning it all sure helps you get back control of your life. It'll be good!
Binney

Binney and Kat,

Thank you so much for sharing with me, I had never heard of this before. Binney, I've had two infections, urrghhh, did you have cellulitis???!!!! and now this is what they are saying, I had never heard of it! I will be looking at your resources and getting educated.

Kat,

Please be sure you are not overlooking infection, you want to get on antibiotics if this is the case. A tall tale sign of infection is the following: redness, swelling, tenderness to the touch and when you sleep. I never had a fever and I never had indentations... I will say, I had a lumpectomy followed by reexcision... this has made the area a lot more suceptible to things!

I will post back on here how the treatment goes. Thanks again for sharing!

Hi, Flustered, and welcome!

Glad you found us, but really sorry for all the reasons that made that necessary!

Goodness, what a difficult situation you're in! Just let me say right off the bat, you are NOT a mad woman, not an ingrate, and you're not nuts -- even though these mind games can sure make you doubt yourself. Shame on them all! Take your courage in hand and insist on the help you need -- we're all behind you!

An ultrasound can detect pooled fluid in your tissues (like post-surgical seromas), but the fluid of lymphedema is not pooled, it's all spread out among the cells. Ultrasound is not a diagnostic test for lymphedema. An MRI or a doppler may be used to rule out other conditions that could cause swelling, but even they fall short of diagnosing lymphedema. The diagnosis of lymphedema has actually already been made -- by the private therapist you saw. Trust it.

Still, you really need to find a doctor who will listen to you. And considering the repeated serious cellulitis, how about an infectious disease specialist? You might find one who could take lymphedema seriously, and that would be a help, for sure.

In the meantime, do check out the information page about breast lymphedema that I mentioned in my above post. You need some therapy to reduce the fibrosis (that's the hardness you feel) and get the fluid out of there, and you need to be taught to do your own self-massage. You also need help with proper compression for your breast and arm once the fluid has been moved out. If you find a therapist who can do that for you, you'll be well on your way to getting your life back.

Some of your comments make me think you're in the UK, but since you're not spelling it "lymphoedema" you have me wondering. Here's a page of lymphedema resource organizations, including some in several countries. Hopefully one or another will be helpful in finding the medical professionals you need to give you a hand with this:

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

And here, by the way, is a page of information for your doctors -- you might want to copy it and share it with them.

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

Flustered, I really hope you soon get the help that's so long overdue you. Please let us know what you discover.

Be well!
Binney

Hello Ladies!!!

Thanks sooo much for the replies.  I'm in Ireland and yes things are pretty different here...not just the spelling of Lymph(o)edema!!!!   I know that I'm lucky to be here and have access to some great surgeons irregardless of whether I have insurance or not.  The problem seems to arise with the aftercare..but maybe that's a whole different topic?  I now have an appointment to see my LE specialist next week.  This time I'll keep seeing her until there's a real difference and now that I know how extremely serious this can get (who wants to keep farming out there kids while they spend a week in hospital on an IV again and again??) I'll be keeping up my own massage daily as well. I think I'll go see the hospital surgeon crowd after I see the woman who I know can help me.  I'm sure she'll also give me some advice about how to proceed with the 'trial' I know will be facing me at the hospital!! You've given me great encouragement which is invaluable.  Will keep you posted and will check in to see how you're all getting on....many, many thanks.

Ladies,

Today when I woke up, there was a clear discharge from my nipple, sent me straight into panic mode again! The amount of fluid is the size of a quarter, I have called the dr to see if he has any issues... I am confident this is not cancer as I just had an MRI and ultrasound done which confirmed I still have fluid...

Ay, ay, ay... always something to think about. I am going to look at Binney's reference sites now to see if there is any info on this.

WE shall keep each other posted!

Thanks Gisu for the post.

I actually went to my first therapy at a lymphedema clinic. She says I am at Stage 1 and that it is in my breast and trunk (back) and she worked on me for an hour and a half. Se taught me techniques, she recommended a compression bra, I was going to look into it this week. In the meantime, I have worn my sports bra and it seems to feel better. After my therapy my back was tender this is most likely because the fluids were moving.

I am a bit frustrated that this is another thing we need to deal with, but I am grateful we have this format to chat about it. I would have NEVER known about this if it were not for these rooms... and you were right the surgeon said for me to continue massaging it and that I did not need anything else. The LE told me it was good I came in as it only gets worse in time.

Hi All!  Nicole....sorry to hear about your fright the other morning.  I know it's little things like this that can send us into a downward spiral psychologically if we don't get answers, genuinely heard etc.  Thank goodness we can at least discuss these issues that are affecting us online with others who may be able to offer some insight - shared experience, and so on.  I hope you're feeling 'better' having seen your specialist?  Pat, sorry to hear you had similar problems with 'fluid' following lumpectomy, and yes the 'rock hanging off your chest' is an experience I share too.  I saw my breast surgeon (head of my team) recently and the whole 'issue' seems to be that I boil down to a statistic.  I am the 'bad' statistic!  I am the only patient who they've operated on who's developed breast cellulitus needing hospitalisation and is experienceing breast 'lymphoedema'.  Apparently the very fact that I have breast lymphoedema is questionable.  My surgeon is dubious as to whether it is possible to have breast lymphoedema following mastectomy and DIEP surgery. I mentioned to him that I might be the only person in my country but that I'm not the only person in Europe or America.  It was at this point that he seemed to acknowledge that I might actually know a lot more about what was going on with me than he had originally hoped.  We did agree, however,  that I was having serious problems which would need to be monitored.  Are there any DIEP people out there with breast lymphoedema/Cellulitus or am I truly that unusual????

Hi Binney....oh how can I thank you?  I met with one of my surgeons 'team' who had seen me in the hospital following my last cellulitus outbreak.  After a back and forward with him for half an hour he decided best to call the main man himself.  He came into the room with a measuring tape and proceeded to measure my arms!!  I bravely turned to him and said that I don't actually have arm lypmhoedema but breast lymphoedema which has gone undiagnosed by him and his 'team' and asked to speak to him about it privately.  He has studied 'arm lypmhoedema' extensively and is published!!! I Let him boast about his expertise before tackling the problem at hand....breast lymphoedema and resulting cellulitus following lack of diagnosis before first outbreak since my recon a year earlier.  He played a game with me regarding whether it is possible to diagnose breast lymphoedema following DIEP recon and whether this exists and it's not possible to have 'lymp' hoedema in reconstructed breast.  Yes, a game of words, exasperating and if I had brought along the literature you suggested...well, who knows, hung for a sheep as a lamb???  Am seeing my LE this week and will update her on all that was said at this meeting.   Maybe she will 'shed some light' on the issue??  I'm certainly hoping she has the guts to back up her original diagnosis. I need more solid info on DIEPS and resulting lymphoedema to get anywhere with this apparently although personally I don't believe this should be neccessary. Will let you know how I get on with LE's opinion/diagnosis. 

SO EXCITED TO REPORT, one week into my massage therapy and I can actually SEE and FEEL the results! My therapist is female, first female on my team and I am wondering why it has taken me so long to find her! SHE GETS IT!

She is patient, she is kind, she is comforting, and most importantly I am seeing regression.So, to all my lady friends out there if you have lymphedema in your breast, please find a good therapist specialized in treating it, it has made a WORLD of difference!

Off to do my happy dance!

Nicole

I forgot to mention, they are using targeted laser therapy... it is BRILLIANT! This has just been FDA approved, already been used in Australia for 15 years!

Thanks Kira for mentioning that the concensus in the recent LymphLink certainly was not a condemnation of Low Level Laser Therapy (LLLT).  I felt that one of the more significant comments by the contributors was regarding the laser's safety.  To quote directly from Dr. Jeffery Basford MD, PhD and Dr. Andrea Cheville MD,MS's article on their assessment of the laser:

"LLLT, by definition, involves low amounts of energy and no risk of thermal injury.  While some have raised the thought that stimulation could accelerate cancer growth, this issue remains theoretical.  As a result safety concerns related to LLLT are low and adverse effect reports rare. In fact an attractive aspect of LLLT is that treatment does not raise tissue temperature significantly.  Therefore, LLLT can be used during the acute stages of an injury or in conditions for which heat  might be expected to worsen swelling or inflammation."

For me, the issue of safety is always paramount before considering trialing or incorporating a new treatment modality. Obviously, unanswered questions remain as to the actual mechanism by which LLLT has a positive effect on LE.  I totally support ongoing research and large study data, but I just happen to take issue with the premise that the LLLT should not be currently incorporated into the treatment plan for patients with LE.  

I believe that given the documented safety of a Class 1 Laser and the increasing number of positive reports coming from therapists who are actively using the LLLT specifically in their LE practice, it is totally reasonable and potentially advantageous for a LE patient to pursue LLLT.

I also agree TOTALLY with Dr. Cheville's comments that "LLLT does NOT eliminate the need for phase II CDT maintenance treatments."   LLLT should be viewed as an adjunctive therapy and not a replacement for the gold standard of CDT.

My personal LE therapist has been having very significant results with the laser in her LE practice.  While it is true that LLLT can be very effective at softening and reducing fibrotic tissue, treating fibrosis is a process which takes place slowly over time and requires repeated sessions with the laser. Very rapid and dramatic response is being seen in patients who do NOT have fibrosis but simple swelling of their LE afffected limb.  I have heard numerous stories of patients who have measurable and symptomatic improvements after just one laser session and ongoing improvement over time. I still marvel every time I can actually pick up the skin at my wrist and create multiple wrinkles with easy movement over an area that at one time would not budge!

I welcome the large clinical trials and research that hopefully will be forthcoming.  There are any number of independent clinicians such as Ellen Poage, MSN, ARNP, MPH, CLT-LANA who are adding their research data one case at a time as she did with her positive Case Study presented in that same issue of the LymphLink.  I am trying to encourage my therapist to also keep detailed records of the improvements she is seeing in her patients. Only time will tell the full import and lasting benefit of incorporating LLLT as a new treatment modality for LE, but I personally believe that we as patients should have the option to choose for ourselves whether we are willing to test that modality.

P.S.  Congrats Nicole112 on your great results!

Kira and Linda,

THANK YOU for your addedinput... I was the patient who researched every step of the way my dx and treatments... and fnny enough, when I went to my therapist, I didn't even second guess her thought to use the laser treatment. I didn't even consider any of the potential controversy around the laser treatments. I will talk with her more about it early next week... in fact, my onc and my radiation onc don't even know she is using this technique, perhaps I should consult with them, too. What I can say, I have seen some major improvements in such a short time, I'm not sure if this is from t\going to therapy or the laser as I only had one appt without the laser and 2 with it...

I have trunk lymphedema and this area continues to stress me out... I have dull aches in my back, I woke up today with more aches in my back... and my concern is bone mets or something scary. I try not to let my brain take me there, its just that they tell you to be "in tuned" with your body and I can't seem to get away from this ache.

With this said, my LE says it is because of the fluid there and this is what we are targeting therapy on, too.

Have any of you ladies had this SE of lymphedema in your trunk (back)?

Binney,

The laser therapy they have been using has been on my breast portion, the back lymphedema they are using massage techniques... I have VERY thick scar tissue in my chest area.... I do not have arm lymph at this time.

Thank you ladies for all the input. I also appreciate hearing you have had the backaches as I am starting to stress out that there was something more going on!

I will touch base with my therapist next week and give you her insight.

Hugs to all!

Kira and Binney, I really do agree with many of the concerns you have about the laser. I too would like to know if there are critical parameters in its use.  I would love to know exactly what it is doing physiologically at the cellular level and whether or not there are potential risks related to indiscriminate or extended usage. 

I also agree that the Australian study is certainly not overwhelming in its size or results.  But when I think about the reasons why the study was done in the first place, it is apparent that laser therapy for LE had been going on in Australia for years prior to the study.  Had those years of use shown poor results or even adverse side effects I am sure the study would have never taken place.  It was because the clinicians and their patients were seeing positive and lasting results without any signs of detrimental effect that prompted the development of a clinical study.  Granted there may be a degree of motivation related to marketing a new product, but I honestly feel that the individuals involved in the study and product development had the greater motivation of trying to provide an effective treatment option for patients suffering with LE.

I recognize that we do not yet have sufficient data to formally recommend LLLT as a standard component of CDT.  Since not everyone who has laser therapy sees a benefit, it would be very helpful to understand why some patients are responders and others are not.  It would also be important to know whether laser treatments for LE should be provided by a universal method that is a "one size fits all"  or are the treatments more effective when customized to the individual's LE type and location.

The Australian study involved only the axilla as the treatment area, yet I know that a great deal of the positive reports are coming from use of the laser in areas other than the axilla.  I personally rarely treat my axilla, but focus primarily on my hand and forearm. I know that even Rian Corp in their educational presentations on the laser to therapists were recommending its use in problematic areas of swelling and fibrosis not exclusive to the axilla.  In fact the laser has been used extensively in Australia for lower limb LE, but because their small clinical study involved only the upper extremity, the FDA  "clearance"  provides for its approved use only on the arms. These are some of the questions that additional research and clinical trials can answer for us.

Hopefully the new research trials will explore use of the laser under a broader spectrum of application methods and anatomical locations than was done in the Australian study. At least one of the benefits of the laser currently being used by an increasing number of therapists in their LE practice, is that we may get a better understanding of the full scope of effective treatment methods, even if it is only anecdotal at this point.  My guess is that as long as the laser continues to prove its relative safety, the creative and thoughtful application by experienced LE therapists will only add to the much needed data collection.

Kira and Binney, I hope you know that I greatly respect you both for your opinions in general and your stance specifically on the laser, because I know it is your concern for the safety and well being of the LE population that urges you to recommend caution. I certainly do not claim to know that LLLT is totally safe and effective in all situations or possible applications. But how many standard of care medications or treatment modalities can make the claim that they are risk free?  Does that mean we don't use them?  Do we truly expect that we must have a guarantee of absolute safety before we can opt to use a treatment modality proven to be effective?

Certainly all of us who have gone through cancer treatments involving surgery, chemo and radiation have a very personal knowledge that risk free options are just not possible.  Even commonly taken drugs like Tylenol and Ibuprofen are not without serious risk and yet we hardly think twice about taking them. I personally believe the Class 1 Low Level Laser to be of much less risk than the many other treatment choices I have made. 

All that being said, I don't believe we are really all that far apart in our stance on the laser.  I just happen to have perhaps a little more willingness to accept a level of risk and thus have a personal experience with the laser that reinforces my belief that it does indeed have real potential for effective treatment of LE.  

I thoroughly enjoy these discussions and hope we can continue to share our personal thought processes.

Kira let us know if you hear any preliminary data from Vanderbilt. I am most interested to know how that trial is going.  Have they posted any details of the structure or scope of the study anywhere?

Linda

carcharm,

thanks for bringing us back to the issue--breast/chest lymphedema

Here's a link to finding a therapist

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

Here's a link about breast/chest lymphedema

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

The therapist finder link can be really helpful--some let you search, and some email you back shortly with trained therapists in your area.

Wondering about the Cleveland Clinic and if they have any trained PT/OT's in their rehabilitation department.

It does sound like it could be truncal lymphedema, and hopefully you'll find a therapist who can help.

Kira