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

why DON'T people educate us more??),

Aaaah, you found our $64,000.00 question!  I can assure you that nobody on this forum will think you are goofy!  You are very wise indeed.

There are many things you can do for risk reduction and begin by having a  talk with your surgeon about your concerns .  The appt with the LE therapist is a great idea.

Also, get measurements of areas of your arms pre and post surgically and keep tabs on them .  Your therapist can assist you.

As for the stretching, I would not do any post op stretching of the axilla too soon.  There has been some  controversy in this area. I might wait  several weeks and then take it slow and ez.  Others here are extraordinarily well informed , and I have no doubt they will weigh in with solid advice, but in the meantime, I wanted to touch base.

They have created a great website :
www.stepup-speakout.org

where  almost all your  questions will be answered. Bookmark it !

The following risk reductions are pretty standard in the meantime:

NO bp or needle sticks on the affected side...ever!
 

Dont wear tight jewelry/watches or rings.

Consider a compression sleeve and hand protection when flying.

Stay well hydrated w/ water.

Do slow low impact exercise withoiut repetive arm movement when ready

Build up the exercise very gradually, over time.

Avoid large quanities of salt

Keep your BMI in check

After your surgery., be caureful about full foroce heavy lifting or repetetive arm movements

Do not engage in deep tissue massage

Be careful of sunburn

Be keenly aware of the affected arm, and " baby it' for awhile- esp in terms of lifting heavy bags, vaccumming  etc ...

Those are the basics- good luck to you !

I went over a year with my LE before I was officially diagnosed, and even with a diagnoses, a breast surgeon I saw in January 2013 told me that it would be very rare to get LE from sentinel node removal. She also said that she didn't know how I could be diagnosed without having been measure before surgery and with my weight gain. Well, obviously the difference in arm measurements were large in enough to support a confirmed dx of LE and I had OT for it.

Anyway, my tip would be to get measured by hopefully a certified LE therapist PRIOR to surgery. If you would get mild LE AFTER surgery, you would have the measurements to help you out. 

NO ONE told me to do that before surgery. But I don't know if Medicare or health insurance would pay for it. Maybe others with more knowledge will chime in.

As far as any excerises to do, your surgeon should be the telling you WHEN and WHAT you can do. You will have movement (mine was no lifting arms no higher than a 45 degree angle til surgeon gave the ok, and I had a weight restriction).

What I also found lacking information was information given out about nerve damage pain from nerves being knicked during the node removal, scar tissue adhesion, and nerve regeneration symptoms (little electrical zaps).

There is so much the medical community in general seems to be behind in for the most part. LE care I received was so poor that I had to come here to learn about what my LE therapist SHOULD be doing and WASN'T.

It is a darn shame that we have to advocate for ourselves to this degree, but it is what it is until it changes I guess.

With something as nasty as LE you would have thought by now there would be much more done in the way of preparing those who have any surgery AT ALL to do with BC or indeed nodes removed from other Cancers as well.

That is unbelievable that a world class hospital has NOT given you a headsup. Good on you for making these moves and I hope all goes well for you.

You are in a great position to do as much as you can do because you havent had surgery yet.

Baseline measure advice and link to stepup-speakout are spot on.

Here's part of a document I wrote for a friend who is facing BC surgery. I copied this from my Word doc and the numbering of paragraphs is a mess, but you'll see what is meant, anyway:

What Can I Do to Lower My Lymphedema Risk During and Just after my Breast Cancer Treatment?

There are steps you can take to lower your risk. You can also take steps to facilitate a very early diagnosis, should you develop lymphedema despite taking precautions.

Take immediate post-surgical precautions

If you are to have any lymph nodes removed (including sentinel node biopsy, which can include four or more nodes) take the following post-surgical precautions:

1. Do not allow blood draws, IVs, or blood pressure measures to be taken on your affected arm, even if the hospital staff and/or your surgeon tells you that your lymphedema risk is so low as to not warrant any arm precautions.  If you have nodes removed from both arms, insist that this work be done using some portion of a leg.
2. Do not perform any exercises, including range-of-motion or ‘wall walking’ stretches that require you to lift your arms above shoulder level, for two weeks following surgery. There may be a small window of opportunity for damaged lymphatics to regenerate, and stressing the axilla by performing traditional post-mastectomy exercises is suspected to interfere with that opportunity. 

Surgeons generally order range-of-motion exercises to commence within a day or so of mastectomy, to help prevent a painful condition called frozen shoulder. The condition is real, but several studies have shown reduced BCRL incidence if these exercises are delayed. A 2008 study compared the incidence of BCRL in women who performed immediate above-shoulder exercise with those who delayed these exercises for 7 days. The women who performed immediate exercises had nearly three times the incidence of BCRL within the first postoperative year, compared to those who waited the week. And yet at the end of that year, there were no statistically significant differences in shoulder movement, grip strength or self-evaluated outcomes between the two groups.[i]

No study seems to suggest avoiding above-shoulder movement after radiation therapy, but scarring from radiation blocks the lymphatics, so common sense suggests that giving the area time to heal before stressing it may lower BCRL risk.

1. Do perform exercises designed to reduce post-surgical swelling. Get your surgeon’s permission, of course, but the following exercises are helpful during the first 10-14 days after surgery (just do not raise arms above shoulder level):[ii]
   1. Lie down and raise your affected arm above the level of your heart (you can bend your elbows--no reaching for recovery yet...) 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.
   2. 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.
   3. 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.
2. Avoid sleeping on your affected arm and do not lie on that side.
3. Stay hydrated: drinking water thins the lymph (fluid), making it easier to move through the body.

Take steps to facilitate an early BCRL diagnosis

An early diagnosis is an important risk-reduction strategy, in the sense that the earlier lymphedema is diagnosed, the more readily and easily it is treated. There is little evidence to suggest that lymphedema can be cured once it develops, but minor swelling is easier to control than is significant swelling; and controlling swelling in turn reduces the risk of disfigurement such as fibrosis, and dangerous complications, such as cellulitis.  Steps you can take include:

1. Before your surgery or radiation treatment starts, request a referral to a certified lymphedema therapist or another individual who is qualified to take arm measurements designed to assess lymphedema. This individual must know and routinely use lymphedema arm-measurement methods. Request baseline measures of both of your arms—before starting breast cancer treatment.

Having baseline arm measures removes a good amount of conjecture if you notice swelling in the weeks or months following treatment. For example, if you are right-handed, your right arm may naturally have more volume than your left arm. If you have nodes removed from your right axilla, in the absence of any baseline measure, a lymphedema therapist will measure both arms and calculate the volume difference between the two. Your right arm may be larger than your left because of early lymphedema—or was it always larger, because your right arm is your dominant arm?  Taking pre-treatment baseline arm measures removes that uncertainty.

You will likely find that pre-treatment baseline measures are not covered by your health insurance policy. If that is the case, check your area for treatment centers or clinics that offer free lymphedema screening or baseline measures, and if not available, call around to see if you can negotiate a reduced rate for a measurement-only visit.

1. Know the signs of lymphedema that you can feel, but not see. Women with BCRL will often notice a feeling of heaviness, tingling, a pins-and-needles sensation, or sometimes a feeling of warmth in an affected arm, long before swelling is visually evident. Fluid volume in an arm can increase some 20% before added volume is even measurable, and yet that is just the time when lymphedema treatment, including manual lymph drainage and compression therapy, can be most effective in holding BCRL at its most mild and controllable stage.
2. Be your own strongest advocate and insist on evaluation by a qualified lymphedema therapist if you suspect you have lymphedema. Women with BCRL report anecdotally that their oncologists, radiologists and surgeons are not always quick to distinguish post-surgical symptoms from early lymphedema, so you may need to press the issue. An experienced lymphedema therapist can often identify early lymphedema through very subtle symptoms that your cancer treatment team is not accustomed to working with.

For help finding a qualified lymphedema therapist, visit the website of Step Up, Speak Out, an organization of and for women with breast cancer related lymphedema. The site is www.step-up-speakout.org ; click on Finding a Qualified Lymphedema Therapist. The Step Up, Speak Out site also offers a downloadable document called What we Want our Healthcare Providers to Know about Lymphedema and a companion page called Essential Lymphedema Information for All Health Care Providers, both written by a physician who has BCRL. This information will give you ammunition to be a very effective advocate for taking steps to prevent, and if necessary manage, lymphedema at its most treatable stage.

Know what to look for: lymphedema symptoms

Keep in mind that BCRL can develop in your arm, your breast, the side of your trunk, and your back. From the American Cancer Society, here are common signs of lymphedema:

• Swelling in the breast, chest, shoulder, arm, or hand
• Area feels full or heavy
• Skin changes texture, feels tight or hard, or looks red
• New aching or discomfort in the area
• Less movement or flexibility in nearby joints, such as your shoulder, hand, or wrist
• Trouble fitting your arm into jacket or shirt sleeves
• Bra doesn't fit the same
• Ring, watch, and/or bracelet feels tight but you have not gained weight
• If you have had any type of breast surgery, lymph nodes removed, or radiation treatment, look at your upper body in front of a mirror. Compare both sides of your body and look for changes in size, shape, or skin color.[iii]

SNB here, too, and told by my big-city, big-university medical center BS that my risk was so low for LE that I shouldn't give it a second thought.  Yeah, right.  Here I am.  Thinking about my LE all the time now--it's last thought every night, first thought every morning as I wrestle the night garment on and off.  Don't stop pestering until you get the measurements, BoatinGirl!

Boatingirl, stick to your guns! No one told me anything about LE - ok, maybe it was written down somewhere in all the paperwork I got but it surely wasn't discussed up front. I am lucky. I don't have LE and I thank my my lucky stars every day. I was back to exercising as soon as possible - lifting weights too (granted very light weights) and had NO idea I should not have been doing that. I refuse to let anyone use my right arm (MX side) for any blood draws and now the veins in my left arm are pretty much used up too. The last time I had to have an IV inserted, they couldn't get one anywhere in my left arm, and both my doctor and my husband tried to tell me to use the right arm - according to them, my odds were so low of getting LE that I shouldn't let it be an issue. Idiots. Anyway, you are surely doing the right thing. Especially since your insurance will pay for the LE visit up front - MAKE your doctor's office give you the order. Or find a different doctor. 

Do not perform any exercises, including range-of-motion or ‘wall walking’ stretches that require you to lift your arms above shoulder level, for two weeks following surgery.

Carol

Thank you for that! I was not sure ( ESP since my BS had me doing JUST THAT, right after surgery ..grrr!)

Boatingirl, maybe call your local Komen chapter and see if they by chance funded any breast centers or hospitals to provide free or low-cost LE screening.  There's a clinic with that funding about an hour from me, and some time ago I did some googling to see where garments and treatment are offered on similar programs, and I was surprised to see how many places I found.  Even though you're prepared with insurance, maybe a free screening clinic is more organized to deviate from a diagnosis-first approach.

The run-around you are getting is unspeakably mortifying.  I am so sad to know you are putting up with this now.

Carol

Another hint about measuring - use the metric side of the tape instead of US inches - metric units (cm and mm) are smaller so you'll get a more precise measurement. 

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.

But the L-Dex is NOT a tool for diagnosis, or even particularly accurate as a measure of current fluid status, since there are multiple factors that can lead to false readings (including not having an empty bladder!). In fact, it's been a huge disappointment in terms of what we'd hoped it would do to help with LE diagnosis and follow-up, and to standardize LE diagnosis criteria. But the company, Impedimed, has continued to hawk it to doctors and hospitals with an advertising campaign that is at best seriously misleading. They even have a website that poses as a patient site, where patients were encouraged to tell about their own LE experiences, but the whole site was very heavily slanted toward advertising the L-Dex--including their "informative" videos. Nowhere on their site did they acknowledge that it was a commercial site or that they sponsored it, so several of us here put pressure on them about their cover-up and eventually they were at least forced to post an acknowledgement of ownership on their site. Beyond that they won't go, so the site remains, obstensibly offering LE information and advice, but all of it slanted toward their product. They even have a listing of so-called "LE-knowledgeable" doctors that they refer patients to, but it's actually just a list of doctors who have bought L-Dex machines.

There are new technologies being developed that I hope will soon put these folks out of business, but until then it's important not to trust to L-dex results for a true picture of ones own LE condition. It's okay to use in conjunction with other measurement techniques (tapemeasure, perometer, even water displacement), but as a stand-alone it tells you very little, and not near enough to judge your condition.

Ooh! Kinda hit a sore spot! Okay, I'll just jump down off my soapbox now--sorry for the rant, but hope it helps keep everyone on course with their LE control!

Hugs,
Binney

Thanks Binney for this info. You werent on any soap box as far as Im concerned, this is the info we all need to know and what makes this forum so important. Its about people such as yourself who are certainly appreciated for your willingness to share your knowledge and if some of us are doing the wrong thing then its great to be put right! Well thats how I feel anyway.

This machine sounds like what my LEist used on me a couple of months ago. Just as an aside Id love to know what poison they use on those 3 sticky things they put on you. Both my hands and wrists got an itchy rash which took ages to get rid of and they were only on for a few minutes. Ugh.

Anyway, would you be able to share with us what the new or upcoming technologies are? Anything that gives us hope in being able to better control/manage LE has gotta be a good thing.