Time Period for developing lymphedema?

I am so glad you asked this question. I had a bilateral mastectomyon 12/8 where 28 nodes were removed. I still have swelling and pain in my armpit. My doctor told me it doesn't happen that quickly but to be careful lifting, cutting, and never get bp or shots or blood drawn on that arm. Looking forward to hearing other members responses. I am seeing a physical therapist and will be fitted for a compression sleeve as well.

An oncologist I spoke to at MD Anderson told me that 10-12 nodes seemed to be the cut-off for higher risk of developing this problem. She told me that staying lean and losing weight if you are overweight dramatically decreases risk.  I've also read current studies (you can google and evaluate) all point to moderate and regular weight-lifting decreases likelihood of development.

Also, I've read to address cuts and scrapes on that arm or hand immediately--don't let them get infected. No blood draws or BP taken from that arm any more, so if you have surgeries in the future, they should mark that arm with a pen somehow to use the other arm.

I had 11 removed, so I'm concerned myself.

Cats (love your avatar!), that's a really good question. All of us who have been treated for breast cancer are at risk for lymphedema, and the risk remains for life.

I had bilateral mastectomies: one node removed from my cancer side and the other side was prophylactic, so no nodes purposely removed. I developed lymphedema in both arms about three months after the prophylactic mastectomy (which was three years after my cancer treatment and left mastectomy). We have women here who developed it straight out of surgery (so yes, Patty, it can hapen that quickly, and often does). And we have women here who were 23 years out ("23 years out" has a really nice ring to it, doesn't it?! May we all be 23 years out someday!)

Our doctors, including oncs and surgeons, often know very little about lymphedema, because they don't treat it and it's not taught much in medical schools or nursing programs. The medical professionals who are the experts are specially trained lymphedema therapists. You need a referral from any one of your doctors to see one, and that would be a great idea. S/he can do baseline arm measurements for future reference, teach you a gentle lymph massage to use prophylactically, give you personalized risk reduction tips, and possibly fit you for a compression sleeve and glove or gauntlet (fingerless glove) to use prophylactically for exercise and travel. (You ALWAYS want to wear some hand protection if you're wearing a sleeve, so any swelling doesn't get trapped in your hand).

So, yes to Yorkie's suggestion about talking to your surgeon -- or your onc, or even your PCP -- about getting a referral for evaluation. Here's how to find a well-qualified lymphedema therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

As for avoiding your arm for blood pressure, injections and IVs, that too is a life-long risk reduction measure. Even a prophylactic mastectomy presents some risk for lymphedema, so you'll want to decide just how much you want to do about risk reduction. If you've had bilateral mastectomies IVs and bloodwork can both be done in the foot. Your call.

Here's a link to Position Papers from the National Lymphedema Network on Post-breast cancer protocols, Risk reduction, Exercise, and Travel:
http://www.lymphnet.org

If you're shaving under that arm, be extra careful of post-surgical numbness and unevenness that can make it easy to nick yourself. If you do get a nick or scrape, treat it promptly with a topical antibiotic and watch for any signs of infection. Get help promptly if you suspect infection.

Hoping none of you ever have to join our Swell Sorority!

Be well!
Binney

edited to add: Wow! Lots of discussion went on while I was typing this, so, sorry for the repetitions of information!

My first round of LE was 3 years after masectomy w/tram flap reconstruction (20 some nodes removed).  Triggered by a hand-sewing project and multiple needle pokes in fingers.  Had therapy and wore sleeve/glove for about 6 months (until they wore out).

Remained stable with no flare-ups for 13 years (including occasional flying) until this past summer when increased exercise caused swelling that I'm still battling--more in arm this time vs. hand last time.

But I'm happy to report that I went to Zumba tonight kind of apprehensively since my arm and hand flared up yesterday for unknown reasons. It seems as if the movement brought it down, though I did MLD again tonight. Hand is back to normal and arm is down some.

Learning to manage...

Garnet

At the Mayo I had to go to a class after my BMX and removal of 16 lymph nodes. I was told if I were flying for 3 hours or longer I needed to wear a sleeve or wrap it in an ace bandage, no iv's, blood draws or blood pressure cuffs on the affected arm and that was a lifetime recommendation. I have had no signs of lymphedema in the 14 months since my surgery.

Two weeks ago I went to get a CT scan. I told the person who put in my IV that she need to do it on my left arm. She said "Oh you had lymph nodes removed in the right?" to which I said, "yes"   I then went on to tell her how I wished she could use my right arm because I have better veins there. She told me that in time I will. I looked at her perplexed and said, "How long do I have to wait?"  She told me she heard 7 years if there has been absolutely no signs of lymphedema.  Has anyone ever heard this?

I had six nodes removed, but I also had radiation and chemo.  No one is sure what the overall risk is, and it appears it really is individual.  A huge amount of research needs to be done to understand why a healthy, lean woman with five nodes gets it (someone I know), and an overweight person with 21 nodes doesn't (someone else I know). 

I fly with a sleeve.  Understand that some studies also suggest being "preventative" can also precipitate swelling in those without the disease.  If you haven't gotten it yet, at least for me it feels very "darned if you do or don't" kind of thing.  I feel like the flying makes sense.  I'm less sure about wearing a sleeve when I weightlift.

I wanted to give you all a little inspiration.  I got osteoporosis from chemo (and probably family history) and started weight lifting.  I work with a trainer who doesn't know anything about LE, but listens, and has me working at about 60 - 75% of my capacity on my arms.  I have never except once lifted and felt it the next day.  And I've really built up a lot of mass!  Consistency counts.  There is hope, you don't have to be a power lifter to make a difference.

There are a lot of real experts here, I thank Kira especially for her wisdom.  Check out her posts in particular on this issue.  I also learned that low salt meals, drinking plenty of fluids and MLD are as much a part of keeping risk down as the sleeve.

I also love my rebounder!

Ok, now I'm really on the edge of my seat waiting for Binney, Kira or others who are using bandages to weigh in on the Ace question. 

Yes to weight lifting!  But safely, which is also important to LtotheK.  I've been waiting six months since my recon to start weightlifting again (it was very important to me pre surgery). Now I have PS green light, but am waiting for the sleeve to start my program. And will be working with my trusty personal trainer, who attended a workshop taught by one of the PAL researchers, where he learned all about how to address the LE risks that come with weightlifting. I am so itchin' to get started!

As everyone says, I'm sure our resident experts Binney and Kira will weigh in, but Ace bandages are a definite no-no from everything I've heard.  The special bandages used for LE wrapping are specially made short-stretch bandages, and are applied in a very special way in a very special order after lots of training.  You can't just fling on an Ace bandage and hope for the best.  Bandaging with an Ace is worse than no bandage at all as incorrect bandaging can actually precipitate LE or make an existing case of LE worse.  And Nora, hate to tell you, but that CT tech was flat wrong. There is no magic 7 year or any other mark.  It's a lifetime risk. 

Also, with all the talk of wearing compression sleeves - again, from everything I've read, a sleeve must be always worn with a gauntlet - just wearing a sleeve alone can also be worse than not wearing anything, as it may have the effect of pushing fluid into the hand.  And hand LE can be even more difficult to manage than arm LE. 

Binney and/or Kira - any corrections or additions?

Uh, Carol? Not so saintly!

Nora, the problem here is that our doctors and nurses don't receive much training in lymphedema as part of their medical education. Dr. Stanley Rockson at Stanford did a survey of U.S. medical schools a couple of years ago and found that the average amount of time spent learning about the lymph system in the entire medical education was 15 minutes. I've mentioned that to several doctors and they all laugh and say something along the lines of, "That's an exaggeration! Should be closer to 10 minutes!"

The medical professionals trained to recognize and treat lymphedema are specially trained lymphedema therapists. And it was probably (hopefully!) one of those who taught your Mayo lymphedema class. They would NOT say to use an ACE bandage wrapped with an even pressure. They might say to use special short-stretch bandages (which you can't purchase at Walgreens because they have to be specially ordered) ONLY if you've been taught to wrap with gradient pressure. The trouble with ACE on an arm at risk for lymphedema is that it can exert pressure much like a blood pressure cuff. The lymph vessels are just below the skin, and they can't handle that kind of thing gracefully.

In all fairness, maybe the NP who suggested thathas seen women wrapped with short stretch bandages and thought they were ACE bandages, because they're all the same ugly medical-beige. But they don't work the same way with our lymph system, and they have to be wrapped with gradually decreasing pressure from the hand to the arm pit. So...no, not ACE. Here's a page you might want to copy off and pass on to your NP. I don't think it mentions ACE bandages specifically, but it is a gentle eye-opener for our doctors and nurses who are dealing with at-risk patients:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

LtotheK, YES to consistency! When we've talked to Kathryn Schmidz, the researcher who has done the weightlifting/LE studies, she has really emphasized that. The one-day-a-week warriors really run high risk of flares or new swelling, so starting easy and working consistently is key. If you take a break, you need to start way back and work back up again. Thanks for sharing your great results with us -- you're an inspiration!

Be well!
Binney

Yes!!! A nod to my friend, Binney, too, who has also guided my way.  My hat off to you!

Coming to this late--it is SO common for health care providers to tell patients to use ACE bandages: I've had a patient with leg LE after pelvic cancer be told that, as well as arm patients after breast cancer.

I totally agree with Binney on this (who wouldn't?)--a little knowledge is dangerous--these people may have seen short stretch bandaging and not known the difference. They look the same.

Here is from an article by Joe Zuther:

http://acols.com/lymphedematoday/?p=127

There are two distinct types of compression bandages - short-stretch and long-stretch bandages. The difference refers to the extent the bandages can be stretched from their original length. Short-stretch bandages are made from cotton fibers, which are interwoven in a way that allows for about 60% extensibility of its original length, whereas long-stretch bandages, commonly known as "Ace" bandages contain polyurethane, which allows for an extensibility of more than 140% of the bandages' original length.

Short-stretch bandages applied on lower extremity lymphedema

Crucial in lymphedema management is to provide the skin tissues with a solid counterforce against the muscles working underneath, particularly while standing, sitting, walking, or performing therapeutic exercises. The subsequent increase in the tissue pressure during muscle activity in a bandaged extremity promotes lymphatic and venous return, and prevents reaccumulation of evacuated fluid in the skin. It is equally important to prevent the bandages from exerting too much pressure on the tissues during rest, which could cause a tourniquet effect and effectively prevent adequate return of these fluids.

Short-stretch cotton bandages provide the high working pressure needed to achieve these crucial goals and make them the preferred compression bandage in the management of lymphedema. Due to the low resting pressure of short-stretch bandages, tourniquet effects are prevented - provided these bandages are applied correctly.

Long-stretch ("Ace") bandages have the exact opposite effect and are not suitable for lymphedema management. The low working pressure these bandages provide does not offer adequate resistance, and fluid would inevitably reaccumulate. In addition, the high resting pressure of long-stretch bandages could constrict veins and lymph vessels during rest.

Now, back to the original question--per a woman on these boards who recently consulted with Dr. Rockson, he thinks 90% develop LE in the first year and 95% in the next three and the remaining 5% at a later date. 

I had a great article following women after ALND and the vast majority developed it in the first 5 years, but over the next 20 years, another 1-2% joined the club, until at 20 years out, over half had LE. Gotta find the article to reference it.

I got LE three weeks post op, in the setting of AWS and seroma, that would agree with the BMJ article where they tried early PT to avoid LE, and found:

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htmAxillary Web Syndrome is a risk factor for lymphedema: In a study of early PT to minimize lymphedema, a subset of patients who developed axillary web syndrome at 3-4 weeks post-op had an almost universal development of lymphedema, despite intervention http://www.ncbi.nlm.nih.gov/pubmed/20068255

BMJ. 2010; 340: b5396. Published online 2010 January 12. "We also found that 12 of the 18 women who developed secondary lymphoedema had axillary web syndrome during the second and third week after surgery. The axillary web syndrome is a known but poorly studied complication of surgery. No study has shown any link between the axillary web syndrome and the onset of secondary lymphoedema. We and others suggest that the axillary web syndrome may be a sign of injury to the lymphatic system and it could produce a lymphatic overload as a result of failure of the lymphatic system. This overload, together with other factors, could be responsible for the onset of secondary lymphoedema

So, we're all at risk if our lymphatic system is disrupted and I've seen women get LE without axillary surgery, but with prophy mx's. Or with DCIS without lymph node sampling and radiation.

Some women will get a gazillion nodes out and never have a problem, because some women have accessory deep collectors and stronger lymphatic systems.

I did talk to a promiinent researcher last week, and this person told me that they are developing a blood test of biomarkers that will hopefully identiy women at risk, so they can take greater precautions.

My LE therapist who is very, very experienced, has seen a second wave of LE at the 20 year mark, we should all be so luck as Binney said, to hit the 20 year mark.

I think there's periods we're at greater risk, and LE is linked to inflammation, and surgery/chemo/rads cause inflammation so it makes sense that the first 1-3 years are a high period of risk to develop LE, but the risk persists.

Sorry to write a book.

Kira

Hello everyone

Thanks for being here! I have read many posts but this is only my second time writing something. I need help. I had a partial mastectomy and ALND on Dec 14th. Two nodes were positive out of 15. I am just regaining movement of my shoulder now but do find that my left hand and wrist are swollen. Not certain if this is just post surgical swelling or early lymphedema? I was fitted with a compression sleeve last week by a "fitter" in a medical pharmacy (advised by my BS). I am uncertain when I should start wearing the sleeve or should I wait to see a specialist. Could it be LE 2 weeks post-op? Pls help....

Rupi

I never thought of something. It just hit me when I read your post, Kira....

I have never had the signs they were talking about in my class. My right hand has the same look as my left hand (she said in the class that the hand on the same side of the lymph nodes taken out looking a lot younger than the other hand is often the first sign of lyphedema) I do not have swelling, I do not have anything that she talked about. However, my right hand is very stiff when I wake up. I can hardly even bend my fingers. I always attributed that to taking anastrozole. Should I even be concerned?

Nora--you got a lot of good information--I like the idea of the "young hand"--I was looking at my daughters' hands last weekend, and they're not all veiny and tendony like mine.

Personally, IMO, I'd blame the anastrozole, but when in doubt, see a LE therapist.

Kira

Thank you so much Kira

I will get that appt with the LE specialist as soon as I can. Thank you for all the hints to do while waiting. the waiting is so hard....

You guys are all awesome here!

Hugs

Rupi