Pre-BMX and Trying to Stay Ahead of LE - Help Please

Anonymous

Your dang right it doesn't make sense. PROTOCOLS  UGH!!

Im so sorry about this brick wall youre hitting. I just don't know what else to say except keep pushing every way you can and remembner if nothing turns up to get some practise in with self measuring while there is time.

purple32

SpecialK, it is SOME progress, because at least it's an acknowledgement that LE is a possibility, and that alone is gratifying--I hope he also offered her some risk-reduction strategies

You've said a mouthful, binney!

As many of you know, I was measured with perometer at MGH , pre-op but was never ever told  what it was for. They are doing a  study and just asked if I would mind putting my arm in for them. I literally believed it had nothing  to do with BC - let alone LE.

By the time I had re-measured, I already suspected breast LE , thanks to info on this forum. I wish I had looked sooner and saw the tips for my arm/hand. Instead, MGH kept telling me my breast swelling was normal so my head was comfortably buried in the sand for awhile- each time I called them.... as my LE ' travelled ' if you will.

To me, there is NOTHING more important than  risk reduction.

I know I will always  be looking over my shoulder and wondering if I could have prevented this.

With just a 2 min conversation and a trifold brochure of reduction tips, I would be  able to say I did everything I could ...can't say that.  Never got either. This is why I take every opportunity to give peope risk reduction tips and direct them to the wonderful www.stepup-speakout.org site.

Boatingirl

We are soooooo familiar with the roadblocks associated with LE.

Very sorry you are going through this.  I believe you may have to be measured by someone else. In any case, if I were you ( and know what I do now )  I would call PCP and ask if he would "write these measurements in my med records for me" and I would INSIST they document them at your hospital just prior to surgery. They could always add the note: Taken by spouse " or whomever , but I would definitely ask they put them in your record.

Good Luck to you.

Anonymous

Yes the VERY VERY last option is to actually measure yourself. Sorry, just to clarify, what I meant when I said "self measuring" was more meant for those around you which is the much much better option of  hubby, friend or other non professional. But infinitely better still is a professional.

Thats a good idea Purple... asking them to put those measurements on record.

It really makes you annoyed when the medical professionals look down on you as if you know absolutely nothing and they WILL NOT LISTEN.

Edited to add...I believe common sense says if something is preventable then prevention is better than cure. Why then, keep placing the ambulance at the bottom of the cliff where the damage will be increased substantailly wasting resources time money etc...

SpecialK

I think everyone who has a surgery that presents any risk of LE at all should be counseled ahead of time, given resources and information regarding risk and prevention, and measurements should be taken.  Having said that, it is important to note that none of that would have prevented my LE - I had a body-wide severe swelling event during chemo and my LE developed as a result of that.  Just want to put forward the fact that sometimes there is nothing you can do to prevent it, it happens. 

Anonymous

Along with the premise (that is noted time and again) of how important it is to deal with any LE sooner rather than later, it naturally follows that preventative measures are better than dealing with the aftermath. In other words its not so much a question of whether anybodys LE would have occurred anyway,  but a question of how much we are going to lessen issues by using good practise according to instruction we're given before hand. Of course this would be based on data collected from those whove gone before us on the LE road.  Anything that alleviates LE has gotta be good as far as Im concerned.

BoatinGirl

Purple32 and Musical:  thanks again so much for the advice.  Have another LE place I am going to call today.  Doesn't SOMEBODY want to take my money :0?

SpecialK - I am so sorry to hear about what happened with you.  How is your LE now?

Hopefully I will be back with a good report.

P

carol57

Boatingirl, it's sad we have to resort to suggesting guerrilla tactics, but here's another less-than-ideal, but might help thought.  The DMEs (durable medical equipment suppliers) who measure for garments are trained in how to use a tape measure for the most consistent results from measurement to measurement. They do not measure at the same number of points on the arm as an LE therapist would to evaluate and re-check during treatment, but at least the DME knows not to pull too much and uses a non-stretching tape, etc.  So I wonder if you can find out who measures for garments and just ask them, out of kindness, to take some measures--and more than the standards?

Also, I am in a bit of a rush so won't take time to review posts on this thread, but did anyone give you this how-to-measure link?

http://www.absolutemedical.net/medicalProfessionals/measureSleeves.aspx

Again, it's for sleeve sizing, but these measurement points would be a pretty good frame of reference for before/after comparisons.

Progressive hospitals and breast centers are making presurgery baseline measurements the standard of care. It is simply criminal that it's not only not standard elsewhere, but that you have to argue, cajole, push back and spit to make it happen.  Boatingirl, I'm already gray but if I were not, reading your experiences would make it happen.

Carol

BoatinGirl

Woo hoo!  I have an appt with a LE therapist for pre-surgery measurements!  So relieved!  Thank you though Carol for all the information.  It was so sweet of you.

I plan on mentioning that study about limiting above the shoulder movement for the first week.

Thank you all for your encouragement.  For a time there, I thought I was being silly about pushing this.

Binney4

SpecialK, sorry to be so long answering, but I was away from the boards yesterday. A new technology for following edema measurement is called the Delfin Moisture Meter, and is being tested in Finland. Nitocris knows more about it and hopefully will be along with more information.
http://www.delfintech.com/en/lymphedema/

In answer to your question, many researchers are using the L-Dex in conjunction with other measurements to assess how patients are doing in their studies, but the L-Dex alone can't present an accurate picture. Some researchers have abandoned use of it altogether as not being accurate enough. It's also expensive per test. Impedimed has funded a lot of researchers, who (as you can imagine) often have a hard time getting funding for LE research, and we do need to take into account how all that money might influence the field.

Musical, if your skin reacted to the diodes, for goodness sake don't let anyone do it again, as skin reactions are the last thing you need on an area with LE or at risk for it--skin integrity is what keeps infection away. Good to know so you can avoid it in the future!

Perometry (which Purple described) is quite accurate, but only measures arms so is useless for truncal. The perometry machine is wildly expensive, so relatively few centers have one. Water displacement is rarely used--it's messy, but accurate when done well. So tape measures remain the fall-back "technology," and some experience is necessary to do it well. Doing it on your own arm is tricky (to say the least!), so best to have someone else do it.

BoatinGirl, who does the post-surgical measurements? There's still no diagnosis, so obviously it's not done by the people you've contacted. If it's something the surgeon arranges I wonder if you can't dun him/her about doing it pre-surg also. If you point it out to him/her, the advantage of pre-surg measurements should be obvious, even to a surgeon!

SpecialK, very true that there's no way to avoid LE altogether, even with all the risk reduction strategies we know of. Good idea to point that out as part of this discussion, because one of the nastier aspects of LE is the "surprise" element so many of us have experienced, of not being told about our risk and being set up for a serious blow. The real advantage of pre-measurement, risk-reduction and pre-knowledge is being able to monitor for developing problems. It also needs to be mentioned that post-treatment measurements are not enough: our doctors/nurses need to be asking us at every follow-up appointment about symptoms of heaviness, aching, tingling, pain, tight rings or bracelets, or bras that leave marks when we take them off. The earlier we treat these symptoms the easier it is to manage and control the LE moving forward.

Whew! Kinda long-winded! Be well, all! BoatinGirl, looking forward to some resolution on this nonsense for you!

Edited to add Woo-hoo indeed! Way to go, BoatinGirl! And may you never have a "swell" day ever!
Binney

SpecialK

binney - thanks again!  I have a question for you (I am sure it has been answered, just not sure where) regarding LE and elevation.  Any special precautions if I will be at a much higher altitude for a couple of weeks - bracked by overseas flights?

boatingirl - my LE is in a manageable phase, but I am prone to flares.  I did receive therapy, from LE certified therapists, after chemo, and again after exchange.  I was taught exercises and safe techniques for exercise, manual lymphatic drainage massage, specific risk prevention, measured at many points, and referred to a medical device company for sleeve/gauntlet fitting.  I wear bi-lat sleeves (I had SNB on both sides, as well as ALND on the cancer side in a separate surgery) for exercise, any unusual physical exertion, flying, and a sleeve/gauntlet on the right side regularly.  For me personally, I was not willing to rely on chemo and rads to alleviate the cancer in my nodes, so I would not change any of my decisions.  I rest easier at night knowing I removed the cancer surgically, and even though I have LE I am less concerned with it than I would have been with leaving cancerous nodes in place and crossing my fingers that treatment would have been enough to eradicate it.  How to handle this situation is something each individual must decide based on their risk tolerance.

Binney4

SpecialK, it sounds like you have a marvelous trip planned! To fully enjoy it, make sure all your LE supplies are with you in a carry-on so they're not delayed or lost in transit. LE unfortunately never takes a vacation, so plan time daily for your regular self-care and some extra self-mld as needed. Travel usually involves different activities than our usual routine, which can also affect LE and may mean wearing bi-lat garments more often than you normally would. If you're outdoors more, take extra care with insect and sun protection. Talk to one of your doctors about having oral antibiotics (Rx already filled and in hand) in case of infection--along with the usual first-aid supplies of wet-wipes, topical antibiotic and bandaids for quick application in case of nicks, scratches or insect bites. Traveling can entail a change of normal diet too, usually involving more salt and/or alcohol than usual, so make an effort to stay extra-well hydrated.

As for the change of elevation itself, leaving garments on for an hour or two after you land gives your body time to adjust, but be vigilant about symptoms of extra heaviness, achiness or swelling and act on it quickly. A couple years back one of our gals went to Machu Picchu, which is at some unearthly altitude, stayed there several days and walked and climbed all over, and she did just fine, so no need to worry that you won't be able to handle it just fine.

Enjoy!
Binney

Anonymous

Boatingirl GREAT! and as usual Carol puts it so well. My feelings exactly. It is a crying shame that we have to push push push. Gee doesn't it make us feel great when we have to deal with obstinate Meds and barge our way in to get even simple things done. NOT. I still would stand by what I say about getting a family member to do it for you pre surgery, ADDITIONALLY to a prfessional. Why? Because you have your own measurements to fall back on if for some reason you can't get the same person measuring you after surgery, OR you get someone who is not that great at it.  BUT, in saying that I think consistency has a part to play here and it would need to by someone accessible (like hubby) and that they measure in the same places and at the same tightness. Just as an example, my hubby at first fumbled (lol, and was VERY patient at my impatience) but in a couple of days got the hang of it and measured very consistently at the same tightness.

"For a time there, I thought I was being silly about pushing this." 

LOL now you know different! Definitely not silly.

Binney - Thankyou for your comments on rashes. I'm finding I have to look sideways at anything to do with "sticky adhesives" or tape. It's a real pain because even ordinary plasters are suspect. Fortunately theres more than one way around this and one can use gauze bandaging then put the sticky over that. I remember having so many dramas about this through all my treatment, like waking up from surgery and a hospital pillow (with some kind of plastic covering) had come into contact with my shoulder giving me a very nasty rash which took ages to get rid of. Even the gel they use on ultrasound gave me a rash...UGH. Next time I will have to remember to wash the area ASAP afterwards. (Better still, I hope there isnt a next time)

"Water displacement is rarely used--it's messy, but accurate when done well. -"

I never knew about this method until very recently when I followed a link from a post here somewheres. I was fascinated with it, but the study didnt describe exactly how this is done. Do you know of any links so I could see how they do it? I imagine it would be VERY accurate but Im still trying to figure how they would do it...LOL right now Im dreaming up things like arms dropped into small long cylinders of water but .... would you need to be standing or lying down?....I would LOVE to see a pik.

SpecialK I wouldnt change a thing either with what I did even though I HATE LE and how it interferes with my life (but that might change if I learn something I couldve done but didnt know about...or have just plain forgotten). As I keep saying, there are no decent choices with BC, its always the choice of the lesser of 2 evils. I wanted to throw everyhing I had at it. Indeed it does come down to a personal choice of how you want to balance risk with QOL with dare I say it whether you want a life.

Binney4

"LOL right now Im dreaming up things like arms dropped into small long cylinders of water but ...."

Yep, you got it!
http://ptjournal.apta.org/content/82/12/1201/F2.expansion

They do legs what way too for people with lower extremity LE.

Who knew?!
Binney

SpecialK

binney - thanks!  We land at a normal altitude but will be up in the Austrian Alps for a family wedding - I am pretty excited - we leave in about 3 weeks.  My concern is being at a more normal altitude and then going up higher and then coming back down.  I think the bi-lat sleeve wearing is a given - just to be careful.  The good news is that we will be at or near the bride's home so while I will carry extra precautionary supplies, we are not at the mercy of hotels for everything, so yay!  I am always guilty of trying to carry all my necessary stuff with me - I am notorius for not checking a bag, so I should be OK.  This will be an exercise in strategic packing as we will be in a number of different climates, etc., for two weeks.  I will probably just end up wearing black like Johnny Cash, lol!

Anonymous

Brilliant Binney!!! I love these. Yep I'll have one. Everyone who has LE should have One!!!! Who cares about the water!

Mmm, the only thing they dont do is measure specifically where your swelling might be especially if its "on the move" like I experienced recently so I guess its back to the tape for that, but yeah these have their place. ...I still want one.... lol

carol57

SpecialK, I'm so excited for you!  You'll do great, just give that little extra effort in ways that Binney outlined. What fun!!!

SpecialK

carol57 - I am a combination of excited and nervous!  This is the first trip of this kind post-BC and I am concerned about fatigue and making sure things run smoothly - I am the detail person when we travel, so I always feel responsible!  I am excited though because this is a return to some normalcy in my life!  The arrangements are a bit complicated - DH and DD on one plane, me on another, and DS on yet another 4 days later!  All flying into Munich and then taking the train to Salzburg.  I am not really worried about LE related things - I think I will do fine, but was curious about the altitude issues - I flew a lot up to Washington, D.C. for a vaccine trial last year, every 3 weeks for 6 months - as a matter of fact the trip to Austria will be bracketed by a trip to D.C. for a vaccine booster, then a trip up for blood work.  DD has to have her tonsils out 2 days after we get back from Austria - she is soon to be 24 so I have heard that it will be miserable since she is an adult (sort of, lol!) so I will be hanging out with her for a few weeks!

carol57

SpecialK, that's really, really wonderful! Watch out for all the un-ergonomic luggage and 'stuff' toting, and hopefully all your trips to DC got you well trained for lightweight packing and how to move suitcases and the like around with minimal stress to LE body parts.

SpecialK

carol57 - I have rolling everything and I don't carry a purse - don't worry, I got this!  Also, I am vertically challenged so there always seems to be a tall guy to put the stuff in the overhead compartment right when I need one!

yellowdoglady

That is a good thing to do.  Just a few years back, no one had a thing to compare from before.  Most people didn't know what to look for to find a problem.

carol57

Special, you are so ready!  

Just a thought for others who might be reading the thread as they think about air travel, we also have to keep in mind that even rolling bags have to move from home to car to airport, up onto conveyor belts, off luggage carousels, etc., so it's worth thinking about the mechanics of lifting luggage.  The farther away from the body that you hold something, the more torque on the arm and the heavier it is on the torso. Using the legs for upward/downward motion takes burden off the arms (and back). Wearing a heavy backpack can be trouble because the straps cross a key lymph pathway.

Special, have a great, great time on your trip!

BoatinGirl

I have my pre-surgery measurements!!   Thank you all for the encouragement.  After having them, I am even more convinced that this needs to be a pre-surgery event.  Beyond the fact it just makes medical sense to do them before any swelling/change from surgery, it just makes common sense.

At my appointment this morning, I was able to totally focus on learning about LE from the PT.  She spent alot of time explaining it to me.  Educating me on how I can minimize my risk of developing it.  I CANNOT imagine being able to process all that right after surgery, or when first talking about rads.

I am definitely going to mention to my nurse navigator again.  They need to consider their protocol, especially at what is considered a world-class hospital.

Thank you all!!

kira66715

Boatingirl, Good for you!

Personally, I recently had a hysterectomy due to tamoxifen side effects and my LE therapist measured my legs pre-op, and I was terrified it would touch off LE in my legs, as I have a low threshold to get LE: and, saw her yesterday and all the measurements are stable or better, with the exception of the top of my thigh, which she thinks is due to the trauma of the surgery. WHEW!

And how would I know, unless we took the pre-op measurements?

carol57

Boatingirl, pat yourself on the back for being so persistent! And you will do others a great service if you can nudge the institution to implement a standard baseline measure and education protocol. Go for it, and let us know what happens. And of course, best of luck with your surgery. I hope you will let us know how you are afterward, and I especially hope that your visits here are just updates, with no need to chat about any LE worries!

Anonymous

Boatingirl...great!!! good on you. You persisted and it paid off. Love hearing stories like this. All the best for your surgery. We hope you never have to worry about LE, but youve been able to get yourself informed. Pre knowledge of LE (as much as possible) is a very good thing. You are quite right to bring out about the timing factor where youre more able to process the info.

BoatinGirl

Hi - had to circle back and tell you something rather disturbing.  Remember how I had to jump through hoops to get my pre-surgery measurements - I was told they would be taken after the surgery, right, so no need to do before.

Well - I had the surgery last week, and no one ever did take my measurements!  And I ended up having 3 nodes out on one side, and 13 on the other! 

Thank you, thank you, thank you for staying with me, and encouraging me to have them taken.  Called my LE to let her know how many were taken out, and what next steps would be.

Wow...I'm in shock.

Anonymous

I have my pre-surgery measurements!!   Thank you all for the encouragement.  After having them, I am even more convinced that this needs to be a pre-surgery event.

Boatingirl I don't understand! I took it from the above that you'd already had them done. Did they finally convince you to change your mind on the premise or should I say promise, to do them right after surgery?  Great, when youre still out to it and wouldn't know the difference. Grrrrrr!!! First, whatever the case Im so sorry this has happened. That is so infuriating Im just speechless. What is it with people these days that theyre so negligent! 

As an aside, may I ask ( please don't answer if youre not comfortable about it) why they took nodes on both sides. The reason I ask is because I mentioned in another thread here, that I thought they didnt do this unless there were primary tumors on both sides, but I certainly don't know this for sure.

BoatinGirl

Sorry Musical - I must have looked at your post when I was in still a bit of a fog.

I did get my measurements from a LE therapist, prior to my surgery.  I was just shocked to see that when my BS said I would get them after surgery, I did not.  Then was so happy I made a stink to get the referral before surgery. 

MRI and PET scan showed that I had a tumor and lymph node impacted on the left, and 2 very, very small tumors on the right.  So they did the SNB on both sides.  Stopped at 3 nodes on the right.  For the left, they saw with the SNB that 1 of 3 were cancerous, so they went down the next two "layers".  Just so happend that there were that many nodes.

kira66715

Boatingirl, I talked to Jane Armer who has followed >500 women for >8 years and although she took perometer readings every three months the first year, she found so much post operative swelling in the first three months,so she didn't use that data.

So, do not be upset if you swell initially, you've had a lot of trauma.

Just be gentle to yourself, don't lift your arms above shoulder height for the next 10 days or so and you can do these gentle exercises on the ACS page:

The week after surgery

These tips and exercises listed below should be done for the first 3 to 7 (I'd strongly say 10-14 days) days after surgery. Do not begin until you get the OK from your doctor.

• Use your affected arm (on the side where your surgery was) as you normally would when you comb your hair, bathe, get dressed, and eat.
• Lie down and raise your affected arm above the level of your heart for 45 minutes. Do this 2 or 3 times a day. Put your arm on pillows so that your hand is higher than your wrist and your elbow is a little higher than your shoulder. This will help decrease the swelling that may happen after surgery.
• Exercise your affected arm while it is raised above the level of your heart by opening and closing your hand 15 to 25 times. Next, bend and straighten your elbow. Repeat this 3 to 4 times a day. This exercise helps reduce swelling by pumping lymph fluid out of your arm.
• Practice deep breathing exercises (using your diaphragm) at least 6 times a day. Lie down on your back and take a slow, deep breath. Breathe in as much air as you can while trying to expand your chest and abdomen (push your belly button away from your spine). Relax and breathe out. Repeat this 4 or 5 times. This exercise will help maintain normal movement of your chest, making it easier for your lungs to work. Do deep breathing exercises often.
• Do not sleep on your affected arm or lie on that side. (Guess you have to sleep on your back.)

Sending wishes for smooth and uneventful healing.

When you're up for it, your LE therapist can do some manual lymphatic drainage and go over risk reduction tips with you.

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

Anonymous

Oh thanks for that boatingirl and thx for answering re the nodes. What a relief about the measuring and that BS needs a darned good wake up, but usually they know it all and you can't tell em a thing. I wish you all the best for your recovery and by sticking to what kira has written should really help tremendously!