New Lymphedema, have to wait to be seen

Outfield

My surgery - BMX with axillary node dissection on the left only - was almost a year ago, and I finished radiation at the end of December.  I had axillary cording which started two or three weeks after the surgery, then became more pronounced again during radiation, but I didn't have any noticeable lymphedema until recently.

Seemingly out of the blue, about three weeks ago, my left forearm started hurting.  Now it's obviously swollen compared to the other side.  The visible swelling about a week ago.  It's still subtle.  I wouldn't notice it if I didn't have the other arm for comparison.

I saw a lymphedema-certified OT for the cording and I'm trying to get back in to see her again, but I have to wait until June.  I have a relatively low-pressure sleeve that I was given to use for flying and to have "just in case," but I don't have supplies to do anything else nor have I been instructed in anything else.  Wearing the sleeve doesn't seem to be making a difference. I'm sleeping as much as I can with it elevated, but I wake up with it off the pillows.

I'm pretty freaked out about this.  I'm an athlete and I've been really afraid of lymphedema since my diagnosis because sports are so important to me.  I really don't want this to progress.  I'm also unnerved by not knowing why it happened now, instead of last month or next month or whenever.  I can't think of anything I did that wasn't something I'd been doing for a while.  I've been very active and do lift weights, but nothing changed with that.  My best guess is that it's just where I am in the scarring process from radiation.

I'm trying to reach the OT personally, but if I'm not successful and I do have to wait a few weeks to be seen, does anybody have any suggestions for what to do in the meantime?  Would you stop using the arm for anything?   Keep on with the sleeve even if it doesn't seem to help?  Can you make lymphedema worse by stretching too much?

cookiegal

Yikes...LE sucks. Kira and Binney will be along with more advice. I would take it easy on the stretching, drink a lot of water, and go from there....

kira66715

Outfield, lymphedema happens when the compromised lymphatic system gets overwhelmed--often there's no trigger.

The good news is that you caught it early, and studies show that early treatment results in better outcomes.

There are women on these boards--or women who don't have time or inclination to post anymore (Debbie aka Bomber) who are incredibly active with LE

We have a page on the website about what to do while waiting for your first appointment--I'd be carefull about wearing the sleeve without hand protection--you don't want to push the fluid up into the hand

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting

There are links on the page, but here's the text:

What to do While Waiting for Your First Appointment with a Qualified Lymphedema Therapist

DO NOT try and treat this yourself!!! Proper professional treatment is essential to getting control of lymphedema and preventing its progression. Treatment can be expensive and inconvenient, but this condition is life long, potentially disfiguring, disabling and possibly life-threatening (if you get an infection known as cellulitis) so professional evaluation and treatment as soon as possible is essential.

1) Get evaluated promptly by your doctor to rule out other causes for the swelling in your hand/arm, and get a referral to see a well-trained lymphedema therapist;
2) Drink plenty of fluids -- staying well hydrated helps dilute lymph fluid and keep it moving freely;

3) Elevate the swollen arm or hand as much as possible during the day and on pillows at night; support the arm well so that it doesn't tire;

4) Several times a day pause and do some deep breathing -- this helps stimulate the largest lymph vessels in your body;

5) Raise hands over head as high as is comfortable for you, three times a day, and pump fists 20 times;

6) Call for medical help immediately if you have severe pain, redness, fever or feel ill;

7) You can try mild compression gloves by either Sammons Preston or Isotoner® Fingerless Therapeutic Gloves if your hands and/or fingers are swollen until your appointment with your lymphedema therapist. Be sure to bring them along to your appointment;

8) Do NOT use ACE wraps or any other wraps without the advice of your lymphedema therapist after your evaluation and your treatment plan is scheduled.

When it first showed up for me, I found watching JoAnn Rovig's self care videos very helpful

http://www.nwlymphedemacenter.org/

Keep on calling the OT--and see if you can talk to her, or move up the appointment. 

You will get this under control and be running marathons (MOTC and Nordy) and resuming your activities, just with consideration for your LE.

Kira

Outfield

Thank you so much for replying.  Especially for all that information, Kira. 

Step-Up, Speak-Out is a great website and I should have thought of them.  That was where I first figured out what my cords were.  I found a couple other names in my city of therapists who are certified.  So maybe if I don't hear from the woman I've seen, I can get in somewhere else faster. 

So when people have a flare there's not always an identifiable trigger?  That is so frustrating.  

 OF

Estel

outfield - you're in good hands with kira and binney and the step-up, speak-out website.  LE is incredibly frustrating!  And if that isn't frustrating ENOUGH ... what triggers a flare in one person may not in another.  It's enough to make one crazy! 

Some common triggers are:  salt, heat, flying & the pressure changes that go with it ... for me I've found abrupt temperature changes and cold/warm fronts make me hurt and swell ... PMS is another biggie for me.  Also ... preservatives in food like MSG and sodium nirates make me swell too.

I would totally look into trying to find someone else if you can.

 I'm so sorry you're having to deal with this ... but the ladies on here a wealth of information and support.

[[[hugs]]]

LizR

Outfield - I could have written your post!  I am farther out than you (6+ years) - I also noticed arm swelling about a week ago - totally out of the blue.  It started with a couple of days of more pain than normal and then noticeable swelling.  Like you, I am very active (work out 5x week including weights) - and I really did nothing unusual.  I see a LE PT this Friday but she has said that if I need treatment, that won't start for at least another week.  I don't even have a sleeve!  I don't think you will ever know why it happened now.  I certainly am not going to beat myself up that it was something I did (even though my mind is racing over every new exercise - like those dumb wrist curls my husband suggested!) - I think it was just a ticking time bomb, waiting to go off.   The ladies here are great and will certainly give you tons of advice while you wait for your appointment.  Good luck to you!  Liz

Outfield

Wow, I am really bummed about this. I saw someone yesterday who I was hoping could get me started actually DOING something about this, but she only took some electrical conductance measurements and told me I had lymphedema. Well, I knew that. My forearm is visibly puffy. I asked her how the test was going to change the plan and she hemmed, hawed, and said some people think they have lympedema but they don't, so I just said fine, do it anyway. Then she referred me to two therapists not covered by my insurance and told me my sleeve is too loose but she couldn't prescribe a new one now.



I did get my appointment moved up to next week with the therapist I saw for the cording (my massage therapist knew another therapist at the clinic and called her on her personal cell, and that therapist happened to be right next to the one who knows me). The therapist I've seen works with someone who is certified but it looks like she isn't certified herself. There is nobody else certified by either of the links from Step-Up, Speak-Out covered on my insurance that I've been able to find, other than that group. It looks like there are all of 3 on any of the lists in my state. I have nothing against the two therapists - the one I saw for the cording seemed good - but their phone people did give me the run around when I was trying to get back in.



I'm so frustrated. Trying to get used to this new flat-chested body image - I don't want any more surgery so no reconstruction - starting to feel OK about that, now I'm wearing this ugly panty-hose looking thing that doesn't seem to be doing much anyway. I wish my sport were running, but I don't run unless it's in a game - my knees are too bad to do running as exercise. I play basketball, softball and soccer. I was wanting to get playing again so badly, now I'm wondering if I'll be able to. At least it's not my throwing arm.



Is fist pumping the same as opening/closing the hand, or flexing and extending the elbow with the hand in a fist?

kira66715

Outfield--This is outrageous!

First of all: bioimpedance--which is the electrical thing she did, is not cleared to make a diagnosis, it's best used with multiple measurements over time. Unfortunately, there's no "gold standard" for diagnosing LE--that's why the National Lymphedema Network is pushing for pre-op and post op careful measurements. A common standard that's used is a 2 cm discrepancy between the arms. But not all women swell to that degree, and it doesn't really apply to hands. Or trunks. Or breasts.

What a waste of your time. Exactly who was this useless woman??

You can talk to the therapists who are covered by your insurance, and ask what training they have.  

Fist pumps: you raise your arm over your head and make a fist and then open the hand, and then make a fist. Binney says she claws the air like a cat, but I open and close my hands.

This is frustrating, and you have every right to be furious

Kira 

For the future, you can go armed with NLN position papers-they have a long one on diagnosing and treating LE

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

kane744

Outfield, I remember like yesterday the frustration you're going through now.  We've been there and feel it often in our lives.  LE has a long long learning curve but it can be self managed most of the time provided you learn the correct way from a properly certified therapist.  So, if you have to bite the bullet and pay for a few treatments until you learn, it is well worth it in the long run.  This is a lifetime disease or condition (I never know what to call it, though I often call it by unprintable names).  Also, check with your local American Cancer Society.  I know they can provide garments to those unable to pay, so perhaps they could help with the therapy end as well.  In my own situation, Medicare will not continue to pay for treatment once measurable results stop.  I feel I have to be managed on a monthly basis, so I pay for a treatment every three weeks, just to make sure I'm doing things right.  I gave up a few things to pay for it, but it's worth it. 

Also, after my surgery, I was given this foam star to squeeze to help me heal.  I use it every day of my life when I'm raising my arms and squeezing. I have long nails and without my star I'd be digging my nails into my palms.  A no--no!   A soft squeezie type ball could help just as well.

Good luck.  The early days are the worst.  Sort of.