Can I get Lymph. w/o node removal?

Options
StillKicking
StillKicking Member Posts: 115
edited June 2014 in Lymphedema

Hello all,

In August I had a bilateral mast.  Small amount of IDC with lots of DCIS in left breast.  Due to family history, elected to have bilateral.  Surgeon said she did not remove any lymph nodes from the right arm.   However, I believe I now have lymphodema in that arm.  Extremely swollen from shoulder to fingertips.  Hand barely closes. Thick feeling.

Based on her statement that I could have blood pressure and blood draws without any problems that is what I did.  Also, this is the side my port is on.

My question is can you get lymphadema without any nodes being removed?

Help.  I've got an appointment next week with the surgeon.

Comments

  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2007

    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 Embarassed!

    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 

  • StillKicking
    StillKicking Member Posts: 115
    edited December 2007

    Binney,

    Thanks so much for your reply.  Not what I wanted to hear, but better to know and get a handle on it now.

    Thanks again.

  • sherry7
    sherry7 Member Posts: 200
    edited December 2007

    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

  • puppyholic
    puppyholic Member Posts: 298
    edited December 2007

    Hi, I'm Newbie too! I'm having problems with my left arm. I thought it was range of motion problems from my bilat diep. I just started (5 sessions) PT but now I'm wondering if I'm seeing the right physical therapist. He has only used devices - ultrasound, electrodes and some sort of chemical thing hooked up to a small device that was supposed to reduce swelling. Now I'm wondering if what I'm experiencing is lympedema. I have a little swelling, pain in my shoulder and upper arm - both dull and sharp - going up to my neck. It doesn't seem to be going away with pt or exercises. He recommended heat and showers. He hasn't done any massage. Any advice? How do you find a qualifed PT? I live in Ventura County CA.

    Thanks.

  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2007

    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 

  • puppyholic
    puppyholic Member Posts: 298
    edited January 2008

    Thanks Binney. I contacted the American Cancer Society today and they were very helpful. I made an appointment with a new PT (who specializes in oncology and lymphedema) for Thursday. Now all I have to do is get my original prescription from the old pt to give the new one. I tried some gentle massage on my arm, upward to my shoulder like the website said, and it seemed to relieve the pain. Thanks for the great advice. I'll definitely let you know if the new pt helps. I at least feel better for doing something!

  • inspiewriter
    inspiewriter Member Posts: 876
    edited January 2008
    You can get LE after any surgery or trauma-- sorry you have to join us.
  • puppyholic
    puppyholic Member Posts: 298
    edited January 2008

    Hi,

    I have good news. My new pt doesn't think I have lymphedema. It's amazing what a competent pt makes. She thinks that what I have is a large amount of scar tissue that is causing me pain and lack of motion. Boy did she hurt me! Anyone that needs physical therapy should definitely only go to someone with experience with breast cancer. What a difference!

  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited January 2008

    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! 

  • goldilocks
    goldilocks Member Posts: 134
    edited January 2008

    After reading everyone's messages, I defininately need to hook up quickly with my ony. in order to see what steps to take. I have pain and only swelling on my hand, however have had rash breakouts on a couple of fingers.  I have been massaging my hand and that helps some of the swelling, have been doing some exercise and hope that will also make a difference.  Thanks for everyone's comments, I get scared and without you as fellow sisters I would be lost.

Categories