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Topic: Lymphedema after 8 years

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Oct 25, 2017 09:31PM

LanvenGM wrote:

I never experienced Lymphedema after treatment. I had a lumpectomy, 9 lymph nodes removed, chemo and radiation. However, I recently have been diagnosed with Lymphedema. Yes after 9 years!! I am awaiting diagnostic mammogram. I had an ultrasound to confirm no blood clots.

My left arm is 1” larger than my right. Some swelling in my left leg.

Is this normal? Is the cancer back?? Thoughts and opinions greatly appreciated

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Oct 25, 2017 10:15PM Moderators wrote:

Hi Lanven-

We're so sorry to hear you're dealing with this! Lymphedema can develop weeks, months, and even years after you've completed treatment. We have some info on our main site that you might find helpful: http://www.breastcancer.org/treatment/side_effects.... People who have many nodes removed are at greater risk. The info on our site includes some risk factors and tips for managing the lymphedema, we hope something works for you! Please keep us posted on how the mammo goes.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Oct 27, 2017 11:27AM - edited Oct 27, 2017 11:29AM by hugz4u

Welcome and so sorry you find yourself here but so smart to educate your self. Le is a steep learning curve.

You can get lymphedema (le) anytime your nodes are disrupted. You need to seek a qualified therapist to learn how to manage it and keep it from progressing and to address the leg swell question. Go to stepup-speakout.org to find a qualified therapist near by and learn more about LE. Some girls here wrote that excellent website.

Don't know why you have leg swelling unless you had radiation/surgery/injury/ node removal from that area. Your arm and leg are different body quadrants that drain lymph separately so this sounds like two different things going on.

Seek a doc opinion on the cancer question to get answers.

Poke around here on the threads so you can educate your self and ask more questions.

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Oct 27, 2017 03:39PM Kicks wrote:

Your LET (LymphEdema Therapist) should be able to address your issues/questions.

LE can develope after any surgery or traumatic injury - even years later. What are you experiencing? It is possible that more than one issue is going on as leg is also involved unless it was involved in surgery (or an injury) also.

If you would fill in your Profile, it would help anyone replying to you by knowing,what you have been through DX, TX so far.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Oct 27, 2017 06:09PM edwards750 wrote:

My support group at church invited a guest speaker who was a lymphodema specialist. She told us lymphodema can indeed happen years after surgery. That was an unpleasant revelation for us. We all thought it typically happened sooner rather than later. Several ladies in our group have it. It is brutal. They are always in pain. All of those ladies had multiple nodes removed.

Diane

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Oct 27, 2017 06:21PM Binney4 wrote:

Hi, Lanven,

A few of us actually do have lymphedema in a leg as well as in our directly-affected arm or chest. That can happen because once lymphedema is present in any limb it can slow the transport of lymph fluid anywhere in the system, but happily few women have that happen. There was a study a few years back that showed this to be the case. Not really surprising, when you think about it, because the lymph system is, after all, a whole, interlinked system. It's possible (even probable) you have had subclinical (Stage 0) lymphedema for some time without it progressing to anything you have noticed until now. In that case a problem with your leg as well would be possible.

Your question of the possible return of the cancer beast can only be answered by your oncologist, but from your limited description of what you're experiencing, there's no call to jump at once to that conclusion (though we all do, don't we?!!)

Please do keep us posted on what you discover, and please let us know how we can help.

Gentle hugs,
Binney

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Oct 29, 2017 05:47PM - edited Oct 29, 2017 07:44PM by hugz4u

Binney. Ok that lymph interlinked system makes sense to me now. I never considered a leg so far away and on seperate quadrant could be affected, is that what happened to you?

My good therapist seems to think that I won't get le in my opposite phrophy arm but I'm not so sure about her opinion now considering I am interlinked and all breast nodes were loped off although I have axilla nodes still. It must be a small percentage though.

Hum I'm still a newbie. Always something we can learn! Imglad Ilearn here!

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Oct 29, 2017 09:17PM Binney4 wrote:

Hugz, yes, I have LE in one leg as well. Diagnosed a couple of years ago now. I think what I've proven beyond all doubt is that my lymph system was seriously deficient from the get-go, and breast cancer treatment didn't do it any favors. Or, as my LE therapist puts it: "I think your lymph system must have been installed upside down!"

And yes, it's rare, thankfully. I caught the leg swelling promptly, which has made it quite easy to control. The point is to be smart and vigilant, without being a basket case about these things.

Lenven, how're you doing? Please know you're in our thoughts.

Gentle hugs,
Binney

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Oct 29, 2017 09:33PM fishingal68 wrote:

Hi ladies,

I haven't had surgery yet, but LE is my biggest fear. (I have to finish chemo before my BMX). My mother had BC twice, and has to use the inflatable sleeve daily to help with her LE, but it really hasn't helped much. She had multiple lymph nodes removed in her surgeries. How many lymph nodes can safely be removed without worrying about having LE? Thanks so much for the info.

Dx 9/7/2017, DCIS/IDC/IDC: Cribriform, Right, 2cm, Stage IIA, Grade 3, ER-/PR-, HER2+

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