lymphedema after snb

SAOIsenberg,

My PS is also the one who issued the no-arm-lifting-no-arm-exercise orders, to protect reconstruction results.  He admits he's not that knowledgeable about LE (but quite willing to listen). What a ridiculous healthcare world when the PS's advice incidentally protects us from the BS's lack of, or poor advice!

Carol

Carol, I just looked at the post-op instructions from Vancouver Health that I thought I liked, and lots of overhead stretching:

http://www.asc-vancouver.ca/Breast_Lumpectomy_Partial_Mastectomy.pdf

And, Livestrong is just as bad:

http://www.livestrong.com/article/393015-post-lumpectomy-exercises/

A google search turns up a page on the NLN from Saskia, the executive director, from 1998

LE reduction with surgery

http://www.lymphnet.org/lymphedemaFAQs/riskReduction/cancerSurgery.htm

Over the last decade, millions of dollars have been raised for research in the prevention and treatment of breast cancer in the United States, but minimal attention has been given to the often devastating side effect: lymphedema. A number of doctors continue to tell their patients that, until it has been scientifically proven, they will not support any guidelines regarding avoiding injections, intravenous administration, blood draws, or blood pressures in the affected limb. True, we can not predict why some patients develop lymphedema and others do not. And, until the funds have been raised and studies completed, we, as health care providers, owe it to our patients to provide them with all the information and support currently available.  

So, has progress been made in the last 14 years? A lot, but this is the only LE reduction info I can find in the post-op period, and I was just fortunate to hear the amazing Jodi Wiinicour talk last year, and plan to take her breast cancer rehab course, and she generously shared articles wth me.

At Jodi's lecture, she talked about a common patient she saw: thin, active did a lot of overhead stretching early on and came in with tons of axillary webbing a big axillary seroma and was a set up for LE: she described me perfectly. And with no post op instructions (other than call if you have a fever), I thought I was doing the right thing....

Carol, I re-watched "Inside Job" last week, and kind of wonder about ethics and bankers....

Kira

Carol, you're right -- there's nothing out there for patients that providers will buy. The Lighthouse Lymphedema group (in Atlanta) did try putting together a patient-information brochure but the doctors they approached wouldn't use it because (they said) they didn't want to scare their patients. So creating the material is only half the battle, not even the hardest part -- the question of how to make it available is harder to solve. There are other hurdles: women facing a new bc diagnosis are too rattled to take in anything as "secondary" as LE risk -- they're all about saving their lives and LE seems like a minor issue (sadly, at a time when some precautions could make a big difference to their future QOL). After treatment they're afraid of it and would rather not think about it. Wearing LE garments to any get-together of BC veterans always makes me feel like a pariah -- women moving away with an "Oooh, LE!", like it was contagious. And I've had women say, "You have LE -- don't talk to me about it, I don't want to deal with it!" Komen throws up all kinds of barriers to LE information at their events, because they believe it's the upbeat tone that attracts donors, and LE is decidedly not upbeat, and at least at my local level the ACS will do nothing about it because "we already have a brochure about it, and that's enough."

As for ethics, I have repeatedly approached the AMA's Ethics Committee about the fact that doctors do not inform their patients about this serious medical complication of cancer treatment, because if you read their ethics statement it is clearly contrary to their rules, and the ethics committee is the place violations like this are dealt with. I have NEVER received so much as a form response from them. NOTHING. They are unassailable by the likes of us LE patients. When you think about it, though, that is not surprising, since the committee is made up of doctors, who we all know do not consider LE serious, much less their responsibility. Still, I periodically shoot off another appeal to them and quote their own guidelines to them, and  -- NADA!

We do have a lympher here at bc.org who is a commercial designer and has designed a  delighful and highly accessible info booklet for bc patients. She hasn't pursued publishing it for a number of reasons, including that there's no way to finance it much less distribute it to an audience of patients and professionals who don't want to see it.

I'm not sure why this is so difficult, but it's a moot question: it just IS.
<sigh!>
Binney

Now that I know BCO retains the rights to our posts, I'd prefer that we create our stories at a separate site that isn't under their thumb. Because of the multiple requests we have made to the moderators asking to have bad info corrected, we need to reserve the right to gather, create and publish our own info that will provide an accurate picture of what LE patients experience and endure. I want Carol to have full credit for the work she is going to do on our behalf. One of the reasons that SUSO is such an excellent resource is that it makes every effort to remain current and to present accurate info on LE. BCO has been a wonderful resource, but it has its limitations.




Carol, I love the idea of moving huge quantities of anything bucket by bucket! Thank you!

Kira, that "common patient" you heard described at Jodi Winicour's talk could have been me, too. :-(

Lunakin, when I heard Jodi talk I felt--relief at understanding what happened, and fury that my surgeon felt the webs and the seroma and asked me what to do about it--and I was so exhausted, it was the two week post op check and we'd waited hours in the room, that I told her to leave it alone. Subsequently, there have been articles about inflammation and seroma and how seroma increases LE risk. Wish I knew the information when it would have done me the most good...I did email Jodi last week when an old cord re-appeared, and she told me to "carry on" with the stretches and skin lifting. I still need reassurance...

CLC: check out the axillary web page--many therapists will not use U/S over the axilla, concerned about the risk of using it over an area that may have residual cancer cells (there is a 5-10% false negative rate in SNB), but the rest of what she's doing is the right way to deal with the cords--just don't let her pop them on purpose

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

Carol--it has taken years, and collaboration with Binney/Jane/Mei Fu and attending conferences to even get a sense of LE information. It's a steep learning curve.

Kira

CLC--hypothetically ultrasound could stimulate cancer cells--never proven--but most PT's won't use ultraound over any area that could hypothetically have cancer cells--agree with you that the risk is very low.

Don't get me started on the low level laser, but part of what they did was use it iin the axilla and sell it direct to patients--with no research whatsoever on it's biological impact on cancer cells.

Kira

Just got an email from Living Beyond Breast Cancer - there's a free teleconference on LE on 12/1 - find out more and sign up at: http://lbbc.org/Events/2011-12-01-Lymphedema?tr=y&auid=9781284

Sarah 

I had another thought.  There have been some interesting conversations on this thread, but I was skipping them all - thought that given the title this thread would be another list of people just chiming in whether they did/didn't personally develop lymphedema after SNB.  Clearly, it's way more than that.  Is there a way to move it to another name?  

I just looked at the LBBC basic info on LE, and it now includes the chest/breast, it's fine (I can't remember what the prior issue was)

http://www.lbbc.org/Understanding-Breast-Cancer/Beyond-the-Basics/Symptoms-and-Side-Effects/Lymphedema/(language)/eng-US 

Lymphedema
Reviewed by: Carrie Tompkins Stricker, PhD, RN

Updated September 27, 2010

Lymphedema happens when lymph fluid builds up in the body, resulting in swelling and other possible symptoms.

Lymphedema can occur at any time after treatment-even many years later. If you develop lymphedema after breast cancer treatment, it usually develops in the tissues under the skin of your hand, arm, breast or torso, on the same side as the cancer. As fluid builds up and the area swells, it can cause pain, reduced movement, serious infections, emotional upset and reduced quality of life.

The amount of swelling with lymphedema can be lessened with early and proper detection, skilled therapy and ongoing self-care. Yet, even if swelling disappears, lymphedema is a chronic condition and remains a health concern for the rest of your life. Despite such challenges, many women successfully manage lymphedema and move forward with their lives.

How Breast Cancer Treatment Can Lead to Lymphedema

Lymphedema Treatment

Reducing Lymphedema Risk

How Breast Cancer Treatment Can Lead to Lymphedema

The lymph system helps protect your body from infection. Lymph vessels collect fluid and protein from body tissues, and lymph nodes filter unwanted substances (bacteria, cancer cells) out of this fluid.

When axillary lymph nodes and vessels are removed by surgery or damaged by radiation therapy, excess protein-rich fluid can collect in the arm, underarm or chest, resulting in lymphedema.

Symptoms of lymphedema may include:

A sense of fullness, skin tightness or swelling in the arm, wrist or hand
Decreased flexibility of the wrist or hand
Difficulty wearing a ring, bracelet or wristwatch
Causes

Except for a few clear factors, we know very little about what causes lymphedema to develop in some people and not in others. Some factors that may increase your risk for developing lymphedema are:

Being overweight or gaining a lot of weight after surgery
Having an arm injury or infection on the side you had surgery
Putting sudden or sustained stresses on upper body muscles (such as with lifting heavy suitcases)
Lymphedema Treatment

Once it has developed, lymphedema is usually a lifelong condition. Early intervention may improve your responsiveness to treatment.

Complete decongestive therapy consists of a special, very light massage called manual lymphatic drainage, wrapping with special compressive bandages (not ACE wraps) and specific exercises. After swelling is reduced, a compression garment (sleeve, glove or bra) should be worn during the day with bandaging at night.

Reducing Your Risk

There is little research on ways to reduce your risk for developing lymphedema, but experts offer a few tips:

Avoid getting vaccinations, injections, blood draws or blood pressure testing on the side of the body where you had surgery.
Clean cuts and scrapes quickly and apply an antibiotic to prevent infection.
Keep your weight down.
Wear a compression sleeve during air travel.
Use insect repellent to avoid bug bites.
Avoid wearing tight jewelry, clothing or cuffs, and do not carry heavy objects with the side of the body that is at risk.
Avoid extreme cold or heat.
Avoid cutting cuticles.
Exercise with guidance from a trained lymphedema professional or your doctor.
Protect your hands, fingers and arms while cooking, baking, gardening, cleaning, sewing and doing other tasks.
Read more about lymphedema and the providers who helped us write this page in our Guide to Understanding Lymphedema.

Binney, I'm still trying to remember exactly what LBBC did: I think it was mis-information in a quarterly newsletter,

But, they also did another webnar, soon after Andrea Chevile, and while it has some good information, they underestimate the risk of LE after SNB and they state again and again that you can not get LE with just a prophy mx (as though all those inframmary nodes removed along with the breast tissue had no purpose....I've seen prophy mastectomy path reports where they take the "tail of Spence" and 10 nodes show up....)

http://www.lbbc.org/Event-Archive/2009-08-18-Lymphedema 

She quotes 7-10% LE after SNB, but admits later in the talk that genetic predisposition is important.

But NO increased risk with surgery in the quadrant: prophy mx

Kira 

In choosing my reconstruction options, I put a lot of emphasis on the hope that I will be able to get back to fencing, which places an extreme amount of stress on the body, especially the weapon-wielding arm (right arm, figures...). It's one of the main reasons I didn't do a DIEP, since they'd have to use a tiny bit of muscle on one side. I'm now wondering how much risk I'll face because of the risk of LE...

Every Thanksgiving, they play the song on a local radio station at scheduled times.  DH always makes sure he hears it.

Got a call from my LE therapist today.  The sleeve he ordered me has come in!  I get it tomorrow morning.  It will be so good to get out of this wrap during the day.  Will also get a plan for how to treat this once rads are over (next Friday the 11th) Yay!!!!  I just hope my arm fits in it since his wrapping was much better than mine.  Fingers crossed.