Not an acceptable side effect

Ropes-End and bluepearl, ugh, I'm so sorry to hear that you are going through such misery from LE. Can you please help me with a question? For the past couple of days I've had an egg shaped lump in my arm (inner cease of elbow) on my BC side. I went to the doctor yesterday (regular GP) and she said it is LE. Do you know if there a way to test to see if it actually is lymphedema? It isn't red, nor does it hurt. The doctor seemed to be sure that that is what it is simply by looking at it. Many thanks

Bluepearl, the study you cite about Manual Lymph Drainage (MLD--the lymphedema massage routine) being ineffective is unfortunately seriously flawed. Sigh! But one problem with verifying the effectiveness of MLD is that there are not good studies to show its effectiveness, much less which particular aspects of standard LE treatment are most effective. LE research is not well funded (no surprise, right? Grrrrr!!)

Slowly but surely, LE research is moving forward anyway. Not fast enough, of course. The whole lymph system has historically been ignored (the fact that most of it is invisible didn't help throughout the ages when all the other bodily systems were being "discovered" and studied.) Here's a brief history of the study of the lymph system that might be helpful in understanding why we're so far behind:

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

Onward!
Binney

Ropes-end, I hear your pain--and I'm so sorry! Please don't worry about being "negative"--goodness, we've all been there, and saying so here is entirely understandable. Rant on!

As for breast surgeons and other doctors not giving LE sufficient thought, that's too true. Here at bc.org we've had several doctors who have themselves developed LE, and they're now strong advocates for better training in med schools and nursing programs, as well as questions that cover the lymph system on the certifying tests, to encourage prospective doctors to pay attention!

As for reparative surgery, there are a couple of options, none of which work as a cure. Node transfers move nodes from other areas of the body to the armpit in the hope they'll find their new surroundings amenable and start to work clearing lymph fluid. Another procedure links the remaining lymph vessels directly into the circulatory system in an attempt to circumvent the damaged or missing nodes. A third, used primarily when the swelling has become dysfunctional and there is a lot of fat accumulation below the skin surface, is a form of liposuction, designed both to remove the fat and to leave as much of the delicate lymph system intact as possible.

Node transfer was developed in France by Dr. Corinne Becker who has been resistant to taking the time to do any reliable studies. In the ones she's published she did some cherry-picking of subjects, so the results are hardly representative. There is a very thorough study presented by PTs in France who have had to deal with the results of these surgeries, and they're not encouraging. (Among other problems, "borrowing" lymph nodes from another site can result in LE in the donor site.) This procedure seems to result in a softer limb, though not necessarily a smaller one. It also appears to limit the number of cellulitis infections in people who are prone to them, though that is not true in every case. Still, Dr. Becker has been in the U.S. on a number of occasions training U.S. doctors, so if that's something you want to consider there's no advantage to traveling to France.

In Sweden, Dr. Brorson is the expert who developed LE liposuction. He does not use it except in situations where the LE has been out of control long enough to result in serious fat-deposition issues. He too has taught U.S. doctors his procedure, but they are not all as dedicated as he is to discerning who might be appropriate for the procedure. He is clear that it is not a cure, and patients who undergo this procedure regain functional limb contours, but MUST wear compression consistently for life.

The linking of lymph vessels into blood vessels is a procedure that has not been done over a long period of time. As a result there are no long-term studies of how this might affect the on-going efficacy or safety of the surgery. We just don't know. There are doctors here in the States doing their own studies on this and the node transfer surgeries, but obviously we won't have results on long-term effects until…well, until a long time has passed! And then only if the doctor-researchers involved follow their patients over the long term.

In other words--yep, still experimental. Here at bc.org we have a number of women who have had the surgeries, and they post their progress from time to time so you can follow their anecdotal accounts. There are also women who have had these surgeries with unfortunate outcomes, and they do NOT post here publicly (though some of us hear from them in private messages), so it's harder to follow that half of the equation. If you're interested in pursuing any of these options, take your time and do your homework.

Your question about testing for genetic predisposition is a whole 'nother issue. What is currently known is that some of us are born with a more robust lymphatic system than others. So far, nobody knows why, much less which genes may be affected. There is well-funded research going on at a university in Georgia that is looking at this kind of question. They're trying to play catch-up on learning about exactly how the lymph system operates, which is itself a field that has been sadly neglected. There is imaging available (but not widely, and it takes expert interpretation to understand) that can tell a person something about their lymph system even, say, before bc surgery. But that still would not tell any one individual whether or not they will develop LE. And even if it did, they could do only so much to prevent or delay it.

For that matter, risk reduction strategies are another area that has been too little researched. A recent study that seemed to debunk such strategies was poorly done and even more poorly interpreted. (In fact, it's created havoc for those of us who wish to protect ourselves.) The most obvious problem with designing a study to test whether certain things (like blood pressure cuffs, airplane trips, blood draws, heavy lifting, etc.) can trigger LE, is that it would be unethical to expose at-risk women to those things purposely.

Finally, you mention not being able to lift more than five pounds for life. That's most likely untrue, though if you want to do more it takes some dedication to a very gradual weight-training regimen. Here's more information:

http://www.stepup-speakout.org/Weightlifting%20and...

Sorry to be so long! Hope some of this helps. Please know we're here for you.

Gentle hugs,
Binney

Ropes-end, we were both posting at the same time--hope you found my post directly above yours!

You might be interested in the National Lymphedema Network's Lymph Science Advocacy Program (LSAP), which is a program for training patients in the basics of lymph science and then allowing them to attend and learn from the LE experts from all over the world who assemble for their biennial professional conferences. The attendees are doctors, therapists, and researchers worldwide--and the handful of LSAP patients. It's a stunning opportunity, but it's coming up soon, so if you're interested, apply right away:

http://www.lymphnet.org/patients/lsap

Onward!
Binney

Binney: I got quite an education reading your posts here! This is why I call you the Goddess of all LE Knowledge !! You are very UP on all things LE!

hugs and chocolate,,,, glennie

LE totally stinks. It's so HOT in FL already,,,,, which makes wearing the compression quite uncomfortable. But I have discovered chocolate coated frozen banana bites! Perhaps they are in your local grocery store. They are really yummy.

Ropes-End: I too was told that I was slim and only 6 nodes removed so that I had zero chance of developing LE,, and well, here I am. Most doctors are sadly unaware of the facts of developing LE.

This topic infuriates me! I do not have lymphedema but I'm terrified of it. Of course my BS at a major university teaching hospital was not at all concerned about it. I'm mad that the prevention techniques are so confusing. I'm going to Italy in the fall and worried about the flight. Medical professionals contradict each other on blood draws, BP monitoring, etc. There needs to be so much improvement in prevention and treatments!

I too was told that I wouldn't develop LE because I am young and under weight and only had 3 nodes removed. I expressed my concern with both my MO and surgeon, both dismissed me. I do have a mild case of LE. It's in my trunk and breast. Immediately after my first surgery I developed it. With physical therapy and massage it is almost gone. But since I work two jobs and help my mom take care of my brother who has special needs, I don't have time to continue with all my therapy and really can't afford to keep doing it. Cancer is not a disease for poor people. It's not bad for now and I tolerate it but I do really wish it was gone. I used to travel a lot but now I'm afraid to fly because of it.

It sucks that the side effects are pledged off as nothing by the medical community. Even though I have a great medical team it does seem like they only concentrate on fight cancer and the end justifies the means.

It sucks that we have to suffer.

Ropes, make sure you wash and dry (in the dryer!) your compression sleeve & gauntlet/glove after EVERY wearing so they will “snap back” to original compression levels. You should have at least 2 sets so that you can have one in the laundry and one ready to wear.

I had only 4 nodes out, was told by my BS’ NP that I had only a 2-10% lifetime risk, and still got LE after rads. May I ask why they had to take 19 nodes??? They don’t usually do a dissection that extensive unless SNB turns up positive nodes.

I decided to “out” myself as an LE patient, following Kathy Bates’ example. I not only wear compression while performing (singer-guitarist-dulcimerist) but deliberately wear sleeves & gauntlets in bold patterns. I welcome the inevitable audience questions as a means to increase awareness! I just returned from a folk conference where 2 other women are lumpectomy-radiation survivors, and one of them (a Grammy-winner) has LE. She wears either flesh or black compression--but when she saw my leopard, tattoo, and denim patchwork patterns decided to order some of them.

ChiSandy, HUGE THANK YOU for your active stance on LE. BRAVA! BRAVA! BRAVA!

Chocolate all around!
Binney

It was my LE therapist who said to put the sleeves in the dryer (my plain ones are Juzo, the patterned ones LympheDivas). She said “the manufacturers say not to, but...." Intervals between washing also depend upon how many hours at a time you wear compression sets and whether you can let them rest for a day or two (which is why you need at least two sets) to rotate them so they can contract to their original size. Gauntlets & gloves can go longer between washings. I was told hand-washing in soap & water (not Woolite) is an acceptable alternative to machine washing gently with Dreft. I wash mine in the same kind of mesh bags I use for bras (in separate bags to avoid bra hooks snagging them).

Should also mention that though my forearm cording started shortly after the end of radiation, the LE itself started within 2 wks after starting letrozole.

I hear you Ropes-End. I find it hard to move beyond bc when you have LE. I have many bc friends that dont even get it (they dont have LE) that hurts emotionally for me. I have friends with LE who are able to do so much still. I find I cant do much-everything seems to effect my LE. I hardly ever complain to friends & when I do they act like LE is no big deal & just get over it. My LE tends to cause me more pain then swelling (I have trunk & arm) My trunk never stops hurting...My arm never does either- but the pain is usually less . I also have surgical neuropathy from my SGAP. It too keeps me in constant pain & not mild. My pain level is always a 5 & often a 6 or 7. I have not had a pain free day since before bc 8+ years ago.

I had no idea that I would be left in so much pain. I am almost always depressed & feel very alone.

I knew in advance of surgery that I was at risk for LE- though very low risk according to statistics. My BS said I was not at any risk- I even argued with him about it...gave that up & took it upon myself to do the things to prevent LE...Except I had Truncal LE from day one...It was wrongly DX as temporary LE that would go away in 6 months or so....Its still here. It along with my arm LE was DX 4 years ago.

I had 1 node removed. My BS who was against me doing a prophylactic in my good breast (he said I didnt have cancer in it why remove it) Yet he wanted to take a node from that side too! I said no way (after all I dont have cancer in the breast) I am so glad I stood my ground on that...How I wish I had never had a node removed at all.