masectomy/lymph node surgery

Janice, the drains don't prevent lymphedema (wish they did!) They do help prevent seromas (fluid accumulation that's "pooled" and can be drained with a syringe if necessary). And seromas do seem to be one factor that predicts possible lymphedema. But the fluid that accumulates with lymphedema is not "pooled" and can't be aspirated. It's fluid that is backed up in all the little spaces between the cells, which is why the gentle "massage" called Manual Lymph Drainage (MLD) is the only way to get it out of there (along with compression).

I had two drains following my mastectomy. They stayed in for a couple of weeks and had to be pulled because my fuss-budget body rejected them. But they did their job and prevented seroma on that side. Unfortunately my second mastectomy, three years later, was done by a different surgeon who used only one fairly short drain and I had seroma problems followed by lymphedema. No matter how pesky they are, drains are definitely our friends!

Be well,
Binney

Hi, Janice,

I can understand your concern about MLD creating problems, and in the past doctors have feared that it could spread ACTIVE cancer cells, so MLD was never done in the presence of known, active cancer. But in the past decade, as our understanding of the cellular dynamics of cancer has grown it's become clear that MLD does not cause the spread of active cancer, much less activate cells that may have been "inactive". Those are all chemical processes controled by other factors at a cellular level (that we can't yet figure out how to manipulate).

From a strictly observational viewpoint, that is also obvious once we realize it, because the lymph system (which lacks a pump such as the circulatory system has) pumps fluid primarily through the action of our muscles as they apply pressure to the lymph vessels immediately beneath the surface of our skin, and also by the action of the diaphragm when we breathe deeply. In other words, if you wished to prevent lymph from moving at all, you'd have to lie perfectly still and stop breathing. Far from creating new problems, MLD helps move stagnant lymph fluid more efficiently to working nodes that can perform their cleansing function.

I did notice in another post of yours a mention of lymph fluid being eliminated through the kidneys of women with lymphedema. Actually the lymph is cleansed in the nodes and eventually returned to the circulatory system. Urine is, of course, released through the urinary sytem, but it functions the same in people both with and without lymphedema. (There is some suggestion that there's more histamine than usual in the urine of women with lymphedema, but that probably indicates the inflammatory reaction of tissues exposed to stagnant, high-protein lymph fluid). A good MLD session can result in an increased urine output because the excess fluid that has been stagnant is more efficiently routed back into the natural pathway. Swimming, which is excellent exercise for stimulating the lymph system, has the same effect -- perhaps you've noticed, even before your bc experience, that swimming too creates a need to urinate, no doubt for much the same reason.

Unfortunately, our doctors do not consider lymphedema part of their specialty -- surgeons tend to think it's an oncology issue, and oncologists in turn think (more accurately, actually!) that it's a surgery problem. So where lymphedema's concerned, nobody's minding the store. <Sigh!>

Don't know if that was even what you were asking. Am I close?!

Be well,
Binney

Teresa, it really is confusing! Fortunately, as long as we understand the risks, we can all call the shots as we see them. Let me make a few suggestion that might put your mind at ease.

First, it's a great idea to insist on a referral to a fully-qualified lymphedema therapist for evaluation. S/he is the medical professional who's trained to evaluate and treat lymphedema, as well as to suggest risk reduction strategies personalized to your needs. S/he will do baseline measurements for future reference, teach you a gentle lymphatic massage you can use prophylactically, and no doubt fit you for garments you can use for travel, exercise, strenuous or unusual activities, and any time your hand or arm feels heavy, tingly, achy, or just plain "funny." She should check the fit once you get them so you're sure they're right for you. 

Then, if you're going to travel and you choose not to wear the garments, you can take them with you in your carry on. If you should develop any problems, you'll have both the information and the garments to care for yourself until you can get home to your medical team. It is NO FUN to develop swelling on a flight (or a long drive) and be unable to get help. (Voice of experience here! My lymphedema developed on a flight to Sitka, Alaska -- not exactly the lymphedema capital of the world!)

Here are a couple of information pages on finding a fully-trained lymphedema therapist near you (gotta check their training credentials, because there aren't yet legal standards in place for lymphedema therapist training, but there are standards within the lymphedema profession) and proper fit of lymphedema garments.

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

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

Wishing you no "swell" days, ever!
Binney

hi Teresa

If you come to Europe for vacation, pls let me know and maybe we can meet. I live in Zurich and if you get a chance to come close by? I also thought about going to Rome by train, over night train. Maybe we could meet for a dinner or so. What do you think?