Can I get Lymph. w/o node removal?

Awww, Newbie, this just breaks my heart. You for sure didn't need any new jogs on this bc journey!

Short answer: yes, for sure -- several of us here have lymphedema (LE) after prophylactic mastectomy, and almost invariably our doctors have told us we weren't at risk. (In fact, my surgeon stared at my swelling and continued to deny it could be LE - hmmmm!) And not too long ago a Sister came along who had breast LE from her port placement.

Longer answer: because swelling can have other causes, such as blood clot or (ugh!) cancer recurrence, you want to get your arm assessed quickly. Then you'll want a referral to a well-trained LE therapist for evaluation and treatment called Complete Decongestive Therapy (CDT). The treatment involves several weeks of special massage (Manual Lymph Drainage or MLD) and wrapping with special short-stretch bandages. This will reduce the swelling, and you'll learn to do these things for yourself. After the swelling is down you'll be fitted for a sleeve and glove to keep the swelling in control. (Since your other arm is also at risk you'll get a sleeve and glove for that side as well, which you can use for travel and exercise to prevent LE there.)

In the meantime, use your arm as little as possible and elevate it (on the back of the car seat or couch, on pillows at night). Avoid heat, including hot dish water or a hot bath or shower (warm is okay). Of course don't let anyone use EITHER arm for BP, injections, blood tests or IVs (they can use foot or leg for all these). Be extra careful not to nick, scratch, cut or burn your arm or hand, and be watchful for any redness, pain, fever or itching which could indicate infection. The stagnant lymph fluid is protein-rich and encourages bacterial growth, and the lymph system can spread infection quickly, so if you have any sign of that, high-tail it to the ER for help. Really.

See? I promised you a long answer and sure enough -- never could manage to be brief !

I'm sending ((((((hugs!))))) and will be thinking of you as you work through this rotten new wrinkle. PLEASE keep us posted, and let us know how we can help.

Be well!

Binney 

Newbie time is of the essence, Binney knows what she is talking about, has taught me so much.  I too did not have nodes removed by the two surgeons working on me in tandom.  However I mysteriously developed arm and truncal lymphedema.  I use a glove, sleeve and compression camisole at night for the truncal le.  Good luck and get the help your entitled to!  Good luck

Hi, other newbie!

It sure wouldn't hurt to get a clearer diagnosis before proceeding. If what you're experiencing is lymphedema (LE), then some of the interventions you're describing could make it worse, and none of them are designed to treat it. To find a well-qualified lymphedema therapist in your area you can use the Therapist Locator at www.mylymphedema.com. Click on Therapist Locator, then follow each of the four links (to graduate lists of four different certified therapist programs), entering the information you need to. Two of them you can find therapists by your country and state. For the other two you have to enter your zip code and email, and you should hear back within a week.

Or you can ask your oncologist who to see. But since there are no state-mandated training requirements for LE therapists you'll want to call the theapist first and make sure s/he has had at least 135 hours of specifically LE training beyond their OT or PT certification and at least a year's experience treating it (preferably supervised).

Until you have a definite diagnosis, you can follow some of the practices I listed in the post above. And possibly wearing a tight sports shirt (like bike race athletes wear, y'know?) might help prevent further swelling until you get help. Try one size smaller than you'd normally wear, and wear it inside-out so the seams don't aggravate the area.

Do please let us know what you discover. I hope it's not LE, and that the problem is quickly solved. But if it is, good early treatment can help you get the best outcome and keep it that way. Let us know how it goes,

Binney 

Wonderful news, Newbie!!!!!!!!!!!

And I would add that every woman should be referred to a bc trained PT after surgery, just like after knee or shoulder surgery.  The benefits are probably greater for women after bc surgery!