Time Period for developing lymphedema?

LtotheK

One other tip--order low salt meals on the plane.  I love them not just for lymphedema prevention, they make me feel so much better than the lousy over-salted regular meals!  I don't bloat for two days afterwards!

Anonymous

no BPs or blood draws on the side with nodes taken. You do have to be careful; my mom developed LE 6 years later.

Anne 

seacretgardn

Ladies what do those of us who have had nodes out on both sides do about having blood draws and blood pressure?



I begin taxol in two weeks and I understand that it is common to take blood pressure regularly during the infusion. This has me very concerned.



Has anyone ever had blood pressure taken on their leg?



Thank you for your response.



Laura

Southamptonmom

Okay, after suffering from rads pharyngitis, not being able to swallow, and heading to the ER then OR, I can truly say that I've had it! I even had my poor husband crying with me today. (

I figured I am on my own with this LE crap. So until I find someone with qualified experience, I am doing this myself. I followed some videos on how to wrap, and after an hour and 10 minutes, I wrapped my arm up to my armpit. So far it is a comfortable pain in the ass. My question is, with the exception of showering, do I keep it wrapped until it is stable? Once my measurements are stable, then I get garments to wear during the day, and still wrap at night?

kawee

Going to PT for the edema along breast, under arm and down arm to elbow.  She thinks it's because I injured my arm not lymphedema.  Arm is 3/4" larger than the other one.  My question is --  now suddenly right above the inside of my arm above the elbow I have developed a lump like thing.  She says it's a lymph vessel due to the fluid.  Anyone heard of this?  Plus, the cording I have also developed isn't really breaking up easily.  She says it's very stubborn.  She's doing stretching for that (boy, does that hurt).  I've only been 4 times and am scheduled for 4 weeks. Back to this lump -- should I have someone else check this out?  Can I be sure it's what she says it is.

kira66715

Southhampton: that sounds horrible!

Ideally you should not be treating this yourself. The intensive period does involve all day wrapping for a couple of weeks, just taking off to shower, but this is not a "do it yourself" skill. I had to be taught and re-taught how to wrap. But, you do what you have to do. Avoid chafing or pain.

The day garments and night wrapping is the ideal to keep things in control.

Hope your radiation pharyngitis is better--it's a terrible thing, and all the magic mouthwash, carafate, and diflucan can only do so much.

kawee: I'd have the lump checked out by a physician--we always worry about blood clots, and I've never heard of a large lymph vessel lump. Sometimes veins will swell with LE, but a physician should see it. 

Cording can take time to settle down, does she have you doing exercises at home?

Seacreatgarden: the issue of bilateral and blood pressures is so tough. Some women will allow them on the arm that is at least risk. Others have them taken on the ankle, but the nurses need to learn how to do it properly. I'd suggest you pm Binney--she has them do it on her ankle.

KS1

Kawee,

I had exactly the same thing happen that you describe -- sudden, painless, large (about the size of a large marble), spherical lump suddenly appeared at the elbow.  The lump wasn't red, warm, itchy -- it was just there..  My MO and RO freaked out, and wanted to rule out a blood clot.  But my SO overruled them, saying exactly what your were told --  it's a large  lymph vessel that was filled with fluid that had no where to go.  It resolved over the course of a few months on its own without any problems.  

Not sure if it is related by I had horrible cording and this occurred about the same time I was seeing a LE therapist who was (very aggressively) popping the cords.  - KS1 

kawee

Thanks KS1 and Kira for your response.  It's so nice to have a place to turn when you're concerned.  I appreciate you.  I am faithfully (yuk!) doing my home exercises.  Thought I was all done with this cancer "stuff".  

The PT hasn't for sure ruled out lymphedema.  She's supposed to measure my arm again.  I wonder how she makes her diagnosis.  

kira66715

Kawee, the diagnosis of LE has the problem that there is no single diagnostic criteria for it, some people use an increase in arm volume of 5%, some 10%, some will measure if if there is a 2 cm difference at different points, they consider that significant.

There's a great article by AW Stanton saying that LE will show up long before the arm swells greater than 2 cm.

Link to the full article is halfway down the page:

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

So, we have no single unifying diagnostic criteria, so the diagnosis of LE varies. 

Kira

Bogie

Is it usual to have one arm significantly larger than the other during initial baseline measuring with the PT? It's my weaker arm ,and I'm 8 weeks post op and did have edema in that arm and hand in the hospital. it was also the non cancer side from bilateral MX.



I'm not sure if it swelled since surgery or was always larger since I never measured my arm before.



Any thoughts?



thank you,

beth1965

I just had all my nodes removed on cancer side a few weeks ago. This thread has many good pointers in it thanks for starting this.

Any advice for someone with all nodes removed-i wonder if there will be any possible way to keep it away

kira66715

Bogie: sure--we're not symmetrical--usually our dominant arm is larger. Was it a big difference?

Beth: I'd recommend the risk reduction information on the NLN position paper, and doing the post op limiting of stretch through the axilla, and careful return to isolated exercise of the arm--go low, go slow. If you need links to any of those, please let me know.

The more we research, it's clear that some women are inherently more at risk, but also there are times of increased risk--like post op--and the risk is unfortunately, life long although most LE shows up in the first 3 years.

Hope you never join the "swell sorority"

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

Kira

Southamptonmom

Hey ladies! My non-dominant arm was larger at baseline. I went for blood work 3 weeks ago, and my non-cancer side blew up larger than the right, so now dealing with LE. I also had an ultrasound that shows a dvt in the brachial plexus. Hate this...

kira66715

 Rose, the dvt could make your arm blow up, and it's not LE--what's going on? Anything we can help with?

It sounds really rough.

Kira

11BC

Here are two good resources: 

National Lymphedema Network
http://www.lymphnet.org/home.htm

Lymphedema People
http://www.lymphedemapeople.com/

I had BC surgery (bilateral mastectomy with axillary lymph node dissection on right/cancer side) in Sept. 2008, followed by chemo and radiation. Two weeks after surgery, I also started physical therapy w/ a focus on bilateral mastectomy recover and lymphedema prevention. I still do those exercises. I also wore a compression sleeve when flying on airplanes as a lymphedema preventive measure. When flying, I also tried to keep my cancer-side arm elevated and to do stretching/movement exercises.

I did develop lymphedema in my righ arm (cancer side) in June 2010. It was following a period of a couple months where I was lifting 20 pound boxes a few times a day and toting heavy suitcases daily as part of a job. My arms had started to feel tight, but I disregarded it, thinking it was due to cutting back my arm/chest stretching/strengthening exercises. I then went on vacation. I flew and wore a compression sleeve. In the hotel, I sat one time in a hot tub/whirlpool bath (something it's suggested you don't do if you're at risk for lymphedema). The lymphedema presented itself following the return international flight. I'd worn a compression sleeve, so just my hand swelled once I deboarded the plane. I had been distracted by my seatmate while flying and neglected to elevate my arm and do my arm exercises.

I think these factors (and possibly others) contributed to me getting lymphedema.

I manage it by seeing a physical therapist who specializes in lymphedema treatment, wearing an combo glove/sleeve custom-made compression garment every day and wearing compression bandages at night.

kira66715

11BC--You tell your story so well--you took all the preventive steps you could, but the lymphedema still occurred.

There is a great explanation of why you should wear a gauntlet/glove with a sleeve if you're wearing them for compression--it's on the lymphadiva's site:

http://lymphedivas.com/lymphedema/gauntletandsleeve/ 

A few of us who "met" on this forum, created a website for and about lymphedema:

http://www.stepup-speakout.org/ 

It sounds like you're really diligent about keeping on top of your lymphedema.

Recently there was a heated debate about flying and compression, and women who had gotten lymphedema after air flight wrote about their experiences, and unfortunately, your story is very compelling as to why women at risk should wear compression sleeves and hand protection--and even that may not always be enough to prevent it.

Kira 

Cherrie

Can you get LE with only one node taken out? It has been almost 10 years. My left arm has had permanent numbness but lately my lower arm and two fingers are tingling. There is no swelling or pain. Just wondering.

nehson123

Hi Cherrie, I was told by my PT today that you can develop lymphadema at any time.I'm only 2 months post-op BMX. So far so good,I had 5 nodes. I'm trying to be careful about lifting,still have restrictions with new implants but I have a feeling I'm going to be careful forever. If I start working out not sure if I need a sleeve.Maybe.Have you heard anything about that?

Flintviolet

This is a great thread and lots for me to read through!. I had sentinel lymph node removed on my left side 5 hrs ago when first diagnosed and was never really told anything or read anything about lymphadema risks ( went through radiation and had to get blood drawn every week and they never said anything or asked me if I had lymph nodes removed sonthey could avoid taking blood on that side and I also didnt know about the blood pressure! I didn't find this out until my recent lumpectomy and removal of sentinel and 18 additional lymph nodes (followed by double mastectomy a month latke b/c couldn't get all the cancer). Once I found out I am very insistent on having them take mynbloodmpressure on my ankle/ lower leg. I found pit pretty quickly that it hurts...it helps ease the uncomfortableness by elevating yournleg when theybtake the blood pressure. I don't think I have lymphadema and my breast surgeon told me improbably wouldn't develop it but I don't want to take any chance. I started wearing a compression sleeve and plan to do so for 3-6 months(what I read somewhere). I do have to airplane trips in April and I will wear the sleeve then as well. Anyone know much about the glove ? I have read some and will check out some of the links mentioned here but would also love to hear from anyone who lifts weights on a regular basis? I haven't resumed my normal workout yet ( really trying to obeybdr orders and not do too much too soon) but am really anxious to get back to my routine... Which is about 6 days a week cardio for 45-60 minutes and weight lifting for 45-60 minutes a day.

carol57

Cherrie,  studies show that most lymphedema cases show up within three years of surgery, and then your risk is about 1% each year thereafter. You are indeed at risk lifetime, and there are plenty of cases of women finding they develop lymphedema after a decade or so.  But why not get it checked out?  You are lucky to live in Grand Rapids, because Spectrum Health has a lymphedema clinic, and they provide screenings there, no referral needed.  Look online-- http://www.spectrumhealth.org/documents/cancer/ManageLymphedemaSuccessfully.pdf 

If you call, they will ask if you want an appt with the managing physician or just a screening, and I believe that a screening is free (and provided by their top-notch lymphedema therapy staff).  Just ask.  For sure they give free lymphedema education classes, every few weeks.

Good luck with this.  I sure hope it's not lymphedema, and that it's something easily fixable.

Nehson,  the PAL reasearch trial (Physical Activity and Lymphedema) established guidelines for getting the benefits of weightlifting while minimizing the risks of lymphedema, which can be triggered by heavy lifting. Those guidelines say that if you have a lymphedema diagnosis, wear a compression sleeve and gauntlet or sleeve+ glove while lifting. If you do not have a lymphedema diagnosis, it's best to confer with a lymphedema therapist to discuss your risk factors. Some women are advised to wear a sleeve/gauntlet or glove during aerobic activity, but generally if they already have a lymphedema diagnosis.

Do you have access to a local lymphedema education class?  Is your PT a certified lymphedema therapist (or possibly the PT's practice has a certified lymphedema therapist on staff)? Getting back to working out is of course a great idea, but your lymphedema risk is real (I have it, and I had only 5 nodes removed), so I would urge you to try to find a qualified lymphedema therapist to help you plan a safe way to return to your preferred workout activities.  Here's help on finding one:  http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm 

Good luck--being careful forever does not prevent you from returning to working out, it just means doing your homework and being smart about keeping your risks in mind and taking appropriate precautions. 

Carol 

carol57

Flint, here's a document to get you started on learning what you need to know about weightlifting. http://www.lymphnet.org/pdfDocs/Weight_LE_Misconception.pdf . Lymphnet.org is the website of the National Lymphedema Network, and they provide well researched, medically sound 'position papers' that give us some guidance. There is one on exercise, and another on flying.  You'll find those on their website.

Also, check out www.stepup-speakout.org for lots of resources on precautions you can take.

I'm not sure if there's a position paper on wearing the glove, but you should know that whenever you wear a compression sleeve, you should also wear hand protection--i.e. compression for the hand. I think that if you do not have an actual lymphedema diagnosis, the usual item is a gauntlet, which covers your wrist and the upper parts of the fingers, but does not have actual fingers to cover your entire hand.  Women with a lymphedema diagnosis may need more, i.e. a full glove.  I think Binney or Kira might come by and clarify that for you.

Breast surgeons may or may not be up to date on lymphedema risks and precautions, and as a group, they are often reluctant to acknowledge the condition when it happens (there's even a study on that--how very many women feel that their lymphedema diagnosis was delayed because the surgeons or oncs didn't listen to them or acknowledge their symptoms). So--same advice as in my posts above--try to find a lymphedema class or a screening clinic, or just tell your BS that working out is so very important to you that you need him/her to take the extra step of referring you for an evaluation, to a qualified therapist, so you can craft a safe plan to return to your workout activities.  Good luck--I work out 3x per week with a personal trainer who took a workshop specifically to help women with lymphedema or at risk of it--and the precautions mean slowing down weight progressions, but truly--you don't want lymphedema--so slow and steady (and lots of other precautions) are well worth it if you can skip or keep lymphedema mild and manageable. 

Carol 

kira66715

FlintViolet--you should always wear hand protection when wearing a sleeve--as it can push fluid into the hand, it's more important when wearing the sleeve for prevention, then with established LE;

The lymphadiva group hired Andrea Cheville to write about it:

http://lymphedivas.com/lymphedema/gauntletandsleeve/Importance of Compression Sleeve and Gauntlet Combination

USE OF GAUNTLETS AND COMPRESSION SLEEVES IN LYMPHEDEMA MANAGEMENT AND PREVENTION

Dr. Andrea Cheville, Associate Professor of Physical Medicine at the Mayo Clinic

Controversy persists regarding the benefits of compression garments in preventing lymphedema. A key stumbling block is the possibility of triggering hand lymphedema when wearing a sleeve without a glove or gauntlet. Compression applied to the arm may reduce lymph flow from the hand. Even a normal lymphatic system works harder to drain lymph from the hand than other parts of the arm. This fact explains why hand lymphedema is often the most challenging to treat and why lymphedema specialists take great pains to prevent it. Concern that compression sleeves may inadvertently trigger hand lymphedema underlies the recommendation to always wear a compression gauntlet or glove with a sleeve.

Most women at risk for lymphedema who have not noted increased arm volume, symptoms, or other indicators of early lymphedema wear their sleeves during activities that increase lymph production. Examples include airplane travel, vigorous aerobic or resistive exercise, and repetitive activities performed in an intense fashion. It is important that women using preventative compression sleeves combine their sleeve with either a gauntlet or glove during such activities. Particular attention should be paid to constriction at the shoulder band, elbow, and wrist crease. Sometimes overlap of a gauntlet and sleeve at the wrist can cause excessive pressure.

For women with established lymphedema the decision to use a gauntlet or glove is based on slightly different considerations. Lymphedema of the upper limb may be distributed in a surprisingly patchy manner. For example, lymphedema may be restricted to the underside of the upper arm or the back of the hand. It goes unsaid that lymphedema is a very individual phenomenon. Many women with lymphedema never note hand involvement despite use of an arm compression sleeve for many years. However, even these women should remain watchful for hand swelling since lymphedema is a dynamic process with the potential to change over time. A quick check for hand edema after engaging in the activities listed above is always warranted. Differences in skin texture or the visibility of bones, veins and tendons may indicate lymphedema. These changes suggest a need to consider some form of hand compression.

Of particular concern are women with lymphedema that plan to begin an exercise program or to significantly increase their activity and do not use hand compression. For these individuals use of hand compression during exertion is crucial until a stable level has been established. At that point a woman may carefully experiment with using a sleeve alone. However, it is always prudent and appropriate to use hand compression during vigorous arm activity. As previously noted, hand lymphedema is more difficult to control than arm lymphedema. The hand's irregular shape, its critical role in daily activities and the difficulty inherent in precisely fitting a gauntlet/glove all contribute to this problem. It is vital that early signs of hand lymphedema be taken seriously and that appropriate modifications are made to a patient's lymphedema maintenance program.

In summary, a gauntlet or glove should be used in conjunction with compression sleeves when used for lymphedema prevention. Women with established lymphedema who have not required hand compression should consider adding a glove or gauntlet in situations that may increase lymph production in their arms. Many patients with lymphedema spend their entire lives well-controlled with use of a sleeve alone. A good comparison to the decision to wear a gauntlet/glove with a sleeve is that it is like buying insurance. The risk of having hand lymphedema is present in all women with arm lymphedema and those at risk. Adding a gauntlet buys some protection against this event and like all insured risk, we do not know who will be helped by the insurance and who might not even need it. Working with physicians and therapists skilled in lymphedema management will ensure that each woman develops a safe and effective compression plan tailored to her unique needs.

Bogie

SouthHampton, what is DVT? Are you sure you have LE in the non cancer side? I had the baseline 4 wks post op Kira and PT said my non cancer left side baseline was larger but I don't have the measurements, sorry. I can visually see left side is larger since surgery and 4 blood draws. I had 5 nodes removed on right side and none removed on left side, just bilateral MX. 8 weeks post op.



My PT tells me NO blood draws either side, the RN and surgeons tell me it's fine on the side no nodes taken out. I can't stand the controversy. RNs told me risk of blood clots in leg and foot from blood draws should be more alarming.



I'm upset my surgeon did not have me do a baseline measurement BEFORE surgery. Now I want to know why my non dominant arm visually is larger since surgery. Could it be from blood draws? I am getting fitted for a sleeve and glove in a few weeks and will have exact measurements to compare both arms.

Chris13

Great info here. I was blissfully thinking with only a SN (probably, as nodes look clear in MRIs) that I wouldn't have to deal with Lymphedema after my May UBX/DIEP. Anything to do ahead of time to toughen the lymph system, other than the great tips to deal with the issue after surgery?

carol57

Chris, time may not be on your side for some of these steps, but here is what you might be able to do:



1) get a baseline measure of your arm, by a lymphedema therapist, to make it more likely any LE is diagnosed at the earliest, most treatable stage. There's some evidence that early intervention keeps LE from progressing.



2) clarify with you surgeon that if any nodes whatsoever are taken, orders will be written and posted to ensure you get arm precautions even while waking from surgery. No needles, no BP on that side. If BS says the LE risk with SNB is too low to warrant precautions, insist anyway. You have a perfectly good other arm. (Your post says you will have uni, right?) I have LE after SNB and there are plenty of others with the same experience. LE risk with SNB may be up to 17% --depends on studies and their diverse LE diagnostic criteria and followup periods.



3) do not allow any stretching or range of motion exercises on that side that elevate your arm above the shoulder, for two weeks after surgery. Your diep PS likely will forbid that to protect blood supply to your flap. But immediate shoulder exercise also can interfere with the lymphatics' limited window of opportunity to regenerate.



4) before surgery, strengthen arm, chest and back muscles with resistance exercise. After node removal, lifting heavy objects can trigger a lymphatic response if the limb, chest, etc muscles are not conditioned for the load. I see no research on presurgery conditioning, but it is common sense to me that if you are stronger, you may not 'surprise' the body as much when lifting something heavy. (Of course, your diep lifting restrictions will last long enough to decondition...this strategy probably is more useful with no recon, delayed recon, or perhaps with implants.)



5) overweight going into surgery strongly correlates with higher LE risk, so if needed, shedding pounds would reduce risk. Not so helpful, of course, if surgery is scheduled soon.



I am sorry that I am unaware of any strategy to strengthen the lymphatics. I do wish that existed!



These suggestions are in my 'wish I had known' list.



Best wishes, and may you never need to deal with LE.



Carol

Chris13

Thanks, Carol. Great insights. Wonder how much weight is too much? I'm about 15 pounds overweight, short....and have a 2 week 40th anniversary trip to Tuscany planned before surgery. Guess I shouldn't have had the Irish soda bread at the pub today! But I have even more incentive to lose weight before May 1 surgery, despite Tuscany.

 Also, confused about #3. The PostOp exercise instructions I have from the hospital, with the PT's name and "PT/Lymphedema Therapist," do show raising the arm. (The breast program nurse also talked about LE risk and said I would see an OT.) And I saw somewhere (here?) about keeping the affected arm raised above heart level, which is not above the shoulders of course. 

 And now I'm worried about my Internet business in which I have to lift boxes. Most are under 6 pounds if lifted one at a time. 

 Are we having fun yet?

kira66715

Chris, the recommendation not to lift the arm came from a PT at Klose training school--the lymphatics have a short time frame to reconnect--around 10 days, and she doesn't want women to stretch overhead and put stretch on the axilla--lifting to shoulder height is fine.

There are some ACS exercises for post op, and she'd have you do them for 10 days, and hold off on putting a lot of stretch through the axilla

http://www.cancer.org/Cancer/BreastCancer/MoreInformation/exercises-after-breast-surgeryThe week after surgery

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

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.

I wish I'd known this: I stretched overhead almost immediately, developed a whopping case of axillary web/cording, and an axillary seroma and then LE three weeks out. I got no post op guidance.

Kira 

 

Chris13

Great, makes sense. And of course I'll run them by the OT and nurses immediately postop. With DIEP and I guess the UMX, the nurse already showed me the breathing tubey thing to test your breath levels. She said to take a pop of the pain killer button before doing the deep breathing.

Thanks for all your info.Sorry about your postop lack of info and care.

carol57

Chris,

Here's what the National Cancer Institute says about overweight and LE risk:

Among all breast cancer patients, being obese or overweight may predispose women to developing lymphedema after treatment for breast cancer.[11,23][Level of evidence: I] A well-conducted prospective study followed 138 breast cancer patients for 30 months postdiagnosis. Individuals with body mass indices of 30 or higher at the time of diagnosis were 3.6 times more likely to develop lymphedema, but weight gain after diagnosis was not related.[24]

Where it refers to 'at the time of diagnosis' means at the time of BC diagnosis, I believe, although I suspect that reducing the BMI between BC diagnosis and surgery would lower the risk, if the reduction is meaningful.  

To read the NCI report, go to:  http://www.cancer.gov/cancertopics/pdq/supportivecare/lymphedema/healthprofessional 

Lifting the boxes--your PS will be fiving you lifting restrictions after your diep, for up to six weeks. Mine was bilateral, so I don't know how a uni diep might change the lifting guidelines.  After you recover from your surgery and your PS gives you green light to start reacquainting yourself with your pre-surgical life, you'll want to keep both diep recovery and LE in mind.  Six pounds does not sound like a lot, and for your diep purposes, you'll feel the weight in your abs no matter which arm hefts the box.  The advantage of the uni mx/diep from an LE perspective is that you'll have one arm that can do the heavy lifting.

Having said that, I've been surprised to discover that my left arm does the 'dumb, heavy' work while my dominant right arm/hand does the fine-tune 'smart work.'  My LE is in my left arm-so while I thought I could just 'assign' all the heavy work to my right hand, well...it just isn't that easy.  So you will definitely want to gradually and carefully build strength in your SNB arm, after surgical recovery, using weights that start in very smal increments--1 lb is a good starting point post surgery, no matter how much you were lifting before hand (bicep, tricep, and pectoralis work).  It feels silly (take my word for that one), but 'slowly progressive' is the mantra, and over a few months, you'll be conditioned just fine to lift those boxes with minimal LE risk. Until then--well, just be very cautious with that SNB arm, and try to do the heavy lifting with the other one.

I recently looked at a continuing education course currently being sold to PTs, all about working with patients who just had mastectomy. It tells them to start the patient immediately on full range of motion exercises.  No mention of LE risk or even of node removal.  So--there's too much outdated information out there, and while we hope that a BS or PS sends a well informed OT or PT when therapy is prescribed...apparently we cannot count on that. My BS totally dismissed my LE risk and I woke up in a BP cuff on my SNB side.  That was just last July.  Sad to say, we have to question everything!

Oh, and immediately post-op, you may not be in much condition to run things by the nurses, so think about covering it before hand, assertively, with your surgeon(s).

Bet you'll be glad when all this pre-surgical planning, investigating, and worrying is behind you!

Carol 

Chris13

Thanks again, Carol, for the info. And totally shocking you woke up with a BP cuff on your SNB side. We all could use a patient advocate bedside 24/7, it seems. Of course this person would have to keep up on the latest thinking/research.

 I did the Cleveland Clinic LE estimator (the link is on another thread here), and at first I was 100% at risk. Then I realized I had not converted weight to kilos, so had put in something like 300 pounds. When I recalculated, my risk (with estimates of no nodes and definitely no rad/chemo before surgery) was more like 12%. Of course someone has to be the 12 (and up) %--sigh.