Reverse Arm Mapping and Lymphedema

Quasi · January 2014

I had reverse arm mapping RAM during my RX, there is some evidence out there to suggest that this might help decrease the incidence of lymphedema. I am just curious if you had RAM and still developed lymphedema. I would appreciate it if anyone would be willing to share her story.

Binney4 · January 2014

Interesting question, Quasi--thanks for posting it, and I hope you get some responses.

Just for clarity, this procedure is also called Axillary Reverse Mapping, or ARM. It's similar to tracing the nodes in a sentinel node biopsy, but they trace the nodes that drain the arm instead, and then try to preserve them in an effort to lower lymphedema risk. There's little research to indicate how well it works (or not), and sometimes the marked nodes need to be removed anyway (depending on cancer spread), but at least the theory behind this procedure has some solid science behind it.

Quasi, is your surgeon following her patients in a research setting to help substantiate the outcomes?

Be well!
Binney

Quasi · January 2014

My surgeon believes that with this procedure lymphedema should be history, I beg to differ it is his level of confidence that's actually mltivating me to ask the question. I am absolutely terriffied of lymphedema to the extent of rejecting to go to Europe with my husband (he thought it would be nice to surprise me with a vacation in France -I am terrfied of flying because I would be risking kick starting my lymphedema), my surgeon believes it will All BE WELL, but he didn't get a mastectomy I did. I am just really scared especially because my upper arm has been giving me all sorts of trouble, I just don't want to push my luck.

carol57 · January 2014

To Binney's point, I've seen commentary on this before that poses the practical question of how a surgeon could avoid taking a node deemed to directly drain the arm, if that same node is required to be taken for a node biopsy. Would you take the risk of leaving a node in place to reduce the LE risk, thereby adding to the risk of an undetected spread of cancer? I'm wondering what your surgeon told you about nodes avoided during surgery because of the mapping. Or did she/he say that the mapping confirmed that all the nodes that needed to be taken were removed, but (happily) none of them were found via the mapping to directly drain the arm? Like Binney, I sure wish that the surgeons doing this were doing formal research and documenting outcomes so patients eventually will not have to wonder if the perceived benefits are real.

Quasi, I travel by air all the time, and while we sure cannot generalize our experiences with LE, so far I've been able to keep from getting any LE flares, or if I do, they're really minor. I commonly take 4-5 hour flights and recently traveled to Finland, where I think my longest segment was 8 or 9 hours. Tons of hydration, fist pumping up in the air, compression sleeve and gauntlet on during the day and either wrapping or switching to a night garment during sleep time. Be careful of luggage ergonomics and weight, get up and walk as often as you can, including during layovers. Watch salt consumption. The 'tricks' are endless and annoying, but they might improve your odds of a worry-free voyage. NatsFan thought once about scheduling an appointment with a CLT on arrival after a long trip to the UK, but she didn't have enough lead time to make that happen. You might investigate that possibility, though, for an MLD session to start off your visit itinerary.

I hate to think that we make such big adjustments to our lives to accommodate this dratted LE, but of course, I know perfectly well that we all do just that.

Carol

Kicks · January 2014

Binney and Carol - Thank you for explaiination of ARM/RAM. I had never heard of it - definately nothing was said to me about it at time of UMX. Tonight (when I should have anything happen to pull me away from 'looking') I'll be doing some getting more info - are there any particular sites that are better than some?

From what ya'll have posted - it does seem at least somewhat logical/scientific BUT without good research/trials - who knows. Many 'things' in science/medicine do seem to be great/the way to go in theory and on 'paper' but in the light of reality/use - aren't. I am reminded of a practice that was done for many years that wasn't the best idea. Radiation used to be a fairly common practice to be used on the throat area when tonsils were taken out, especially in very small children. I'm not sure when it was first done but it was in the mid/late 40's into the 60's. Very simplistically, the theory was (especially in the very young) that when tonsils were taken out there might be a 'root' left and they would grow back, so radiation was used to 'kill any root that might be left' to prevent 'them' from growing back. I'm one of those who had it done when I was about 1 1/2 in late 1947/early 1948. It didn't work - tonsils did infact grow back and at 67 I still have a very healthy 2nd set of tonsils. Besides not always keeping them from growing back, there is/was a potential found later for thyroid problems. I've been having thyroid tests for many years to be pro-active. It was my OB when I was PG with first Son who explained it all to me and was emphatic I had to be checked at least yearly which I always have. He was surprised that I knew I had had them at such a young age - I have no memory of it but my parents had told me. I had my yearly checks and was always in the norm range - but after chemos and rads, thyroid decided to 'get lazy' so I'm on synthroid now. Is it just age, the childhood radiation or rads up the side of my neck (area burned bad) - I'll never know nor do I care. My point of rambling on is that what is thought to be good 'science'/'medicine' with what is known at a particular time - isn't necessarily when more knowledge is known.

From the little I've seen here so far today - it does seem that ARM/RAM might possibly be very good for/with some with minimal node involvement - but not for all. I had 19 nodes removed and all 19 were positive.

Quasi - just my thoughts and how I think/feel which is somewhat different than many others. I refuse to be held hostiage by my LE.. Who I am is not definded by LE - It does not limit what I do at all. I'm still just as much an active 'outdoor woman' as I have ever been - well the years do slow me a bit - at 67 I can't do what I did at 27 but its the years not LE. 'Adjustments' - yeah maybe to a degree that makes sense - thanks to LE, I wear my day garments daily, my night garment at night and use my Flexi-Touch daily but those slight inconviences are what I need to do live the life I want to.

Binney4 · January 2014

Kicks, here's a 2009 report regarding ARM:

http://jco.ascopubs.org/content/27/33/5494

There's a small study proposed in Holland that anticipates publishing some results by 2016, but considering that they only started in April of last year, and lymphedema can occur at any time post surgery, that will hardly be definitive evidence of prevention of lymphedema. Their proposal is here:

http://www.ncbi.nlm.nih.gov/pubmed/23782712

And here is a very small, single-site, time-restricted study that at least points out the problem of having to remove ARM nodes that are suspicious for cancer involvement:

http://www.ejso.com/article/S0748-7983(13)00380-6/...

In other words, no very clear evidence either way on this yet. Or in the near future, apparently.

Maybe a decade ago I spoke at length with the breast surgeon who developed this procedure. She was only newly aware of the seriousness of LE in her patients, and she was looking for information about the lymph system--specifically she wanted a map of the lymph nodes that drained the arm and was floored to discover there was no such information available. The further she looked into the subject the more amazed she was at the lack of information about the lymph system. I think she's a genuinely compassionate person who is seeking to "do no damage," and this procedure was her best shot at trying to find a way to be more responsible as a surgeon. But I've never found any studies she initiated, and very little by anyone else, so we basically don't know.

Sound familiar? Sigh! Ah, lymphedema!
Binney

Binney4 · January 2014

Quasi, the fear you feel is so understandable, and I'm so sorry. Please take your time accommodating yourself to this new worry in your life, but DO aim toward taking back control of your life in the new future. Maybe you're not ready for that Paris trip now, but hold that thought and move toward it as you're able. As Kicks and Carol have said, it's possible to take some precautions and move ahead. If you haven't already talked to a well-trained lymphedema therapist, do get a referral from any member of your team for baseline arm measurements, personalized risk-reduction tips, possibly fitting for a compression sleeve and glove to use prophylactically for travel and strenuous activities--and an evaluation of the issues you're having with your upper arm. Here's how to find a well-trained therapist near you:

http://www.stepup-speakout.org/Finding_a_Qualified…

Obviously none of us are saying this is a small matter or an unimportant one, but we're all saying we live our lives with confidence and joy, and we truly wish the same for you. Tell us how we can help, please!

Gentle hugs,
Binney

Quasi · January 2014

Thank you all so much for all your supportive replies, my doctor was very clear about the objectives of this procedure, he said that the first priority is to get the cancer, he said that this procedure along with the SLN biopsy is to give us a map of what is happening, he did tell me that if a node is affected he will remove it even if it drains my arm they suspected that I had at least 2 nodes involved based on my MRI, he saw that 2/3 SLN were affected and decided to remove level 1 and ended up having a total of 12 nodes removed with 3 affected but he did tellme after the operation that he was able to salvage the nodes that seemed to drain my arm not because he WANTED TO but because they did not seem affected, clearly if more nodes are involved it would be hard/impossible to save those nodes that drain the arm. Personally, I just wanted to know whether he was able to save those nodes, had he been unable to do so, I would have known that lymphedema was going to be a reality for me. I think there is value to this information untill resarch proves it is useless, if this is a worthy technique then you know what happened, alternatvely if future research proves that this technique is unable to deliver its desired results, then you have not lost much.

carol57 · January 2014

Quasi, it sure sounds like your surgeon did your surgery with a great deal of skill and compassion, and I hope that managing to avoid the nodes draining the arm wards off the evil LE spirts for you. I don't know how common the mapping procedure is in practice, and it would be great if there were some kind of registry to keep track of mapping / node removal results and which patients ultimately did or did not get LE. That would probably not provide definitie answers about its success in reducing the incidence of LE, but it would sure help expand out knowledge. The odd thing about LE (well, one of the many odd things aboutt LE!) is that it really does not seem to respect any kind of rules when it comes to node removal. I had only 5 nodes out in a SNB where all those nodes lit up as the 'sentinel' position, and I have LE that is thankfully mild. My mother (still with us at age 84!) had all her axillary nodes removed with her radical mx in 1969 and has never had any sign of LE. The risk of LE with axillary dissection is quite high, and even higher with rads, but still, 30-40% of women with those treatments never get it. I'll bet their mapping, if they had it, would show that many nodes removed drained the arm. I'm so glad that researchers and surgeons are pursuing the mapping technique, and as you say, it can play a role in understanding our surgeries and the implication for our LE risk. But there must be many other factors at play to enable women like my mother to avoid LE despite losing all those nodes.

It's a great discussion topic and I'm so glad you posted your experience with it!

mnmbeck · January 2014

I know I am just learning about LE, but how is it possible that you could have all the nodes removed, and NOT get LE? Where does the fluid go if there are no nodes? You got me thinking about my mother (who died in 1985). She had a "bilateral, radical mastectomy". Her cancer was untreated for many years and she ended up with mets to everywhere. But....as far as I know, she never had LE, and she MUST have had MANY (if not all....not sure what 'radical' means) of her nodes removed. This LE is CRAZY.

carol57 · January 2014

mnm, it really is totally nutty! But think about this--even women with full axillary node dissection who get LE can use MLD to nudge the fluid out of the arm. So some pathways remain, obviously bypassing the former nodes, not to mention the scar tissue caused by surgery and rads. Some of us start out with robust pathways. Others, apparently not, and the surgical disruption is more than the body can handle, and we get LE.

carol57 · January 2014

well, maybe I should have said that those with full ALND can nudge 'some' of the fluid out of the arm, because I know that some with LE succeed in reducing the swelling, but not necessarily a lot.

mnmbeck · January 2014

Since we are talking MLD....I am conducting an 'experiment' this weekend. (my whole family is gone, I am alone and have some time). I have marked some spots on my arm to measure throughout the day. I am convinced that there's nothing that brings my swelling down. What I found really surprised me....MLD seems to INCREASE my measurements. It's happened every time. Have you ever heard of that? I got a Lebed DVD and decided to try it today, too. I went through it thinking it was an absolute waste of my time. To my surprise, my measurements came down a bit. I can't get them lower than what seems to be my "new baseline" (which I hate). But, it seems there is a slow increase throughout the day that I can't touch....and it gets worse with MLD, and better with Lebed exercise (at least it did the one time I have done it so far).

Also....has anybody ever heard of 'getting past' LE? For example....dealing with swelling for a certain amount of time, and then having it just resolve? I hear about the possibility of 'creating new pathways', but if that was happening, it seems like the LE would be resolved, or at least sporadic.

Reverse Arm Mapping and Lymphedema

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