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Topic: Cording

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

Posted on: Aug 22, 2009 04:10PM

seaofhope wrote:

I am three weeks post surgery.  I had a bilateral mast., with all lymphnodes (21) taken out on my right side.  My left arm is pretty much back to normal.  My right arm is in pain.  I can not straighten my elbow, and I feel a pulling tightness from my armpit to my wrist.  I noticed a cord under my armpit but do not really see anything down my arm. I see a cord down my ribs, but that isn't bothering me as much.  My surgeon says to continue with the arm exercises and apply some heat under my arm pit.  There is swelling in my arm, though not a huge amount.  Does anyone have experience with this symptom?  Should I be getting myself to a phsical therapist, lyphodema specialist or just give it time to heal?

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Aug 22, 2009 04:15PM KAK wrote:

Sea, I'm a PT & a survivor.  If you can get yourself to a PT who knows how to treat LE, she should be able to help this, too.  I did a rehab seminar this past April that talked about this a lot.  Very common.  I have it, too, from rads (didn't have chemo) & surgery.  I would especially see the PT now, while your swelling is still not so bad so that it doesn't become worse.  LE is unpredictable & you could use some education about how to prevent it.  Meanwhile, PM me if you don't have any luck with finding someone to go to.  I'll see what I can do to supply you with some links to info in the meantime.

Kathi: lumpectomy 8/14/08, finished rads 10/6/08; started tamoxifen 10/27/08, stopped tamoxifen 9/23/09; feel much better now. Dx 7/24/2008, DCIS, 1cm, Stage 0, Grade 3, 0/0 nodes, ER+
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Aug 22, 2009 04:41PM cherneski wrote:

Sea, I too had cords that I could see in my arm, and arm pit.  I also had swelling.  Most of it went away with time.  I still have some swelling in my surgery area.  Keep doing your exercises.  Lymphedema was different than the swelling I had post surgery.  But keep a good eye on it. 

Be careful not to lift anything heavy nothing more than 5 lbs after surgery to be sure, then nothing more than 10 lbs for a year, avoid hot things, avoid bites and cuts avoid hot tub, hot showers and hot baths.  My BS told me not to worry about it, as surgeries have improved so much well I got a paper cut one day on my middle finger, didnt think anything of it then 3 days later 3 of my fingers and half of my hand was swelling, hard and hurt.  So yes I have lymphedema.  Just another lovely thing of cancer.  I hate cancer.

Best of luck to you. 

Hugs

Deborah dx 38 DCIS, IDC, ILC, BRCA- 6 rounds Taxotere+Cytoxin, 25 rads. Dx 4/9/2009, IDC, 2cm, Stage IIIA, Grade 3, 7/13 nodes, ER+/PR+, HER2- Surgery 5/6/2009 Mastectomy: Left, Right Chemotherapy 6/5/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 11/15/2009 Breast, Lymph nodes Surgery 7/14/2010 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 8/17/2014 Femara (letrozole)
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Aug 22, 2009 05:55PM Binney4 wrote:

Hello, Sea,

As the others have said, this cording (it's actually called Axillary Web Syndrome) is disturbingly common. Cording can sometimes be felt from the thumb to the axilla and axilla to waist, but it can also sometimes appear to be just in certain areas, as you noted. Here's an information page about cording and what to do about it:

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

If you have a good lymphedema therapist she will know how to help with this. (There's a place on that page where she can go to request videos of AWS massage, too, if she's interested). If you don't have a therapist yet, any doctor on your team can write you a referral. Here's a page to help you find a well-trained one near you:

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

If you find that warmth eases the discomfort, please use only WARM, not hot compresses, as the heat will draw more lymph fluid to the area, and you for sure don't want that. 

So, yes, you should be getting yourself to a well-trained lyphedema therapist for help. And while you're there s/he can take baseline arm measurements, give you some personalized help with risk reduction, and fit you for sleeves and gloves or gauntlets (fingerless gloves) to wear prophylactically for exercise or travel.

Hoping you get good help and relief quickly!Smile
Binney

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Aug 22, 2009 06:21PM kira wrote:

Sea, the cords are thrombosed lymph vessels, and sometimes veins. Some therapists like to "pop" them, which is essentially to rip them, but Jodi Winicour PT of Klose Training in Colorado who lectures on this all the time, is not comfortable with that approach. Jane Kepics PT whose article is linked on the stepupspeakout site says that if there's a pop with gentle traction, it's not likely doing harm.

Cording is not lymphedema, but it sure is a risk for it: all those lymph vessels can't do their jobs when they're clotted off due to trauma, and no one knows if they open, or new ones form. Many women have little piano wires of cords for years.

In general, most cording goes away in a month or so, but as Deborah wrote, you're at increased risk, especially in the acute phase of cording.

Like Deborah, I had cording, got a couple of bug bites on the arm on a hot day, and my hand swelled, and I've been struggling with it for the last year.

And, like Deborah, my surgeon told me not to worry.

Cording, but some accounts, occurs in most women who have any axillary surgery, but the really painful axillary web syndrome is less frequent.

Be careful right now. Heat is not a good idea for lymphedema, but some gentle heat to the axilla, like a warm shower--not hot--can loosen them and make it feel better. Gentle overhead stretches help. And a good LE PT who knows cording can really help.

For a couple of months, I could reach for a glass without terrible pulling. It rots.

Kira 

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Aug 26, 2009 07:14PM MarieK wrote:

I am almost 3 weeks post op from a mastectomy and axillary node removal.

I've had the under arm pain - started off as tingling and then felt swollen but wasn't.  Lately it just feels like the muscle from my underarm to my elbow had shrunk somehow post surgery.

I never felt an actual cord until today and it is a thin one just under my arm when I extend it.  I've called my surgeon's office and I'm going in to see him to discuss what needs to be done about it.

I'm also going to try and track down a PT who is familiar with this process and with LE.

It's good to find this thread with helpful information and to know that I am not alone in this.

 Thanks!

8/09 Left Mast 10/09 6 rnds FEC 3/10 28xRADs Tamoxifen+Zometa 9/10 300cc TE 2/11 Allergan 410FX Gummy 560cc&reduce rt breast 1/12 reduce rt again 120 cc 5/13 fat graft 6/13 3cm bone met rt femur 7/13 10xRADs 3/14 fat graft & tummy tuck Dx 7/4/2009, IDC, 3cm, Stage IV, Grade 3, 1/5 nodes, mets, ER+/PR+, HER2- Chemotherapy 10/7/2009 CEF Radiation Therapy 4/7/2010 Breast, Lymph nodes Hormonal Therapy 6/1/2010 Radiation Therapy 7/5/2013 Hormonal Therapy 9/27/2013 Arimidex (anastrozole)
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Aug 27, 2009 02:16PM AzKim wrote:

I had the same thing after my surgery,.. I couldn't raise my arm without it pulling through the pit,.the cord is no longer there since my surgery was almost 2 yrs ago,.but,.I still have tightness to a degree,.but,.I've got Lymphedema big time. Went to the PT,.did the massage,.wear the sleeve,.wrap,.you name it....and it's twice the size of my other. ( I loose both *girls* and gain a JUMBO limb,.yippee.Undecided) pffft. Now I know how Hellboy feels if anyone is familiar with that character,.lol.
Dx 12/27/2007, ILC, 6cm+, Stage IIIC, Grade 3, 25/28 nodes, mets, ER-/PR-, HER2+
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Aug 27, 2009 03:30PM Binney4 wrote:

Hi, Kim,

I'm in AZ too. Unless you're up in Rim country, this is a rough time of year for lymphedema. Still, getting nowhere with the wraps and massage must have you feeling pretty frantic. Just wondered if you did a full therapy intensive daily for a couple of weeks or more, and what your therapist says about the stubborn swelling. Sometimes if one therapist is stymied, seeing another can turn the tide in a better direction. Hope you get great help soon!

Marie, hooray for you for taking charge and getting help! Hope you get some quick relief. (Just gotta ask, is that your Wheaten puppy? Tooooo cute! I absolutely love those little clowns -- so completely lovable.)

Gentle hugs!
Binney

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Aug 27, 2009 08:59PM mb2226 wrote:

I had cording, too, and went to a PT who treated it, and within 2 weeks I was back to normal -- and the cording was pretty bad.  I see that some doctors say to do exercises, etc., but I was totally impressed with how my PT got rid of these. She is a BC survivor, too, so she understood all the issues.  My arm is, of course, perfectly fine now (4 years out), but it was really almost perfect within a month or so of PT. I went to her about 3 weeks after surgery and I think it was the best thing I could have done. Good luck!!

Dx 10/10/2005, IDC, Stage I, ER+/PR+, HER2-
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Aug 30, 2009 01:49PM MarieK wrote:

I just wanted to pop in and say that I am working through the exercises and getting more and more mobility. 

The "cord" is still under my arm and when I raise my arm I feel the tug down along my ribs as well (feels like the dressing pulling on my skin except I'm not wearing a dressing anymore).

I'm meeting with the surgeon on Wed to discuss what should be done.  I'm hoping that a) it will go away on it's own as the pamphlet suggested or b) that I'll find someone who is familiar with this and help me work through it.

I find that doing the exercises (arm raises) in bed is very comfortable and I get a much better range of motion.  I can actually lift my arm over my head now and when standing I can get my upper arm over my head and rest my forearm on my head.

It seems like baby steps but at least I feel like I'm getting somewhere....

Yes Binney4 my avatar is my 1 yr old Wheaton puppy - Murphy.

MB226 - thanks for sharing.  It's great to know that this can be "fixed".

8/09 Left Mast 10/09 6 rnds FEC 3/10 28xRADs Tamoxifen+Zometa 9/10 300cc TE 2/11 Allergan 410FX Gummy 560cc&reduce rt breast 1/12 reduce rt again 120 cc 5/13 fat graft 6/13 3cm bone met rt femur 7/13 10xRADs 3/14 fat graft & tummy tuck Dx 7/4/2009, IDC, 3cm, Stage IV, Grade 3, 1/5 nodes, mets, ER+/PR+, HER2- Chemotherapy 10/7/2009 CEF Radiation Therapy 4/7/2010 Breast, Lymph nodes Hormonal Therapy 6/1/2010 Radiation Therapy 7/5/2013 Hormonal Therapy 9/27/2013 Arimidex (anastrozole)
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Sep 1, 2009 03:30AM foxyroxy2983 wrote:

Hello ladies!

I'm not sure if it's cording, but lately I've been having this pain below my right breast (where the cancer was found) that feels like a wire under the skin when I stretch out my arm. The weird thing is that my armpit doesn't hurt when I stretch out my arm. It gets weirder, I've been having pain in my right forearm when I strectch it out, my wrist/thumb area gets swollen, and I had thumb pain the other day. I've told my oncologist about it and asked him if it's lymphedema related and he said no. I'm not sure what to do, I had a chest x-ray done today and they found nothing. I also had an ultrasound done on my right arm and axilla and they found nothing. I had my lymph nodes removed in December and I didn't have any problems until now.  I'm so frustruated and I hate being in pain. I hate not knowing what I have and worse it makes me irritated that my doctors don't know what I have. I don't like to sound like a total nag, but I just want peace of mind when it comes to this whole ordeal.

Sara Dx 5/7/2010, 2cm, Stage IV, Grade 3, 2/6 nodes, mets, ER-/PR-, HER2-
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Sep 1, 2009 08:37AM kira wrote:

It sounds a lot like cording: axillary web syndrome, which is thrombosed lymph vessels. We wrote an article about it on the stepupspeakout site, check it out and see if it sounds familiar. Cording can occur at any point.

Good luck.

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

There is lymphedema associated with cording, that can be reversible. I had cords to my thumb, and couldn't grip a pen for a while.

Let us know how you make out.

Kira 

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Sep 1, 2009 06:29PM MarieK wrote:

Thanks for the link Kira!  There is lots of great info there.

I did find a local PT who is familiar with cording and have booked an appt with her for next week. 

She told me to keep going with the arm raises and pushing myself to the point of the "start" of pain.  She advised me not to push through it. 

I find that everyday I am getting more and more range of motion but the tightness along my upper arm and down my ribs continues.  She says that sounds like the fascia has tightened where scar tissue has formed and that can be massaged loose again.

I never thought I'd want to be a loose lady again but it seems that I do!

Thanks for all the info and support. 

8/09 Left Mast 10/09 6 rnds FEC 3/10 28xRADs Tamoxifen+Zometa 9/10 300cc TE 2/11 Allergan 410FX Gummy 560cc&reduce rt breast 1/12 reduce rt again 120 cc 5/13 fat graft 6/13 3cm bone met rt femur 7/13 10xRADs 3/14 fat graft & tummy tuck Dx 7/4/2009, IDC, 3cm, Stage IV, Grade 3, 1/5 nodes, mets, ER+/PR+, HER2- Chemotherapy 10/7/2009 CEF Radiation Therapy 4/7/2010 Breast, Lymph nodes Hormonal Therapy 6/1/2010 Radiation Therapy 7/5/2013 Hormonal Therapy 9/27/2013 Arimidex (anastrozole)
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Sep 1, 2009 07:58PM kira wrote:

Marie, it sounds like you found a great PT! Hoping for lots of quick loosening, so you can play with that adorable puppy without any discomfort.

Kira 

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Sep 11, 2009 11:03PM - edited Sep 11, 2009 11:04PM by MarieK

This Post was deleted by MarieK.
8/09 Left Mast 10/09 6 rnds FEC 3/10 28xRADs Tamoxifen+Zometa 9/10 300cc TE 2/11 Allergan 410FX Gummy 560cc&reduce rt breast 1/12 reduce rt again 120 cc 5/13 fat graft 6/13 3cm bone met rt femur 7/13 10xRADs 3/14 fat graft & tummy tuck Dx 7/4/2009, IDC, 3cm, Stage IV, Grade 3, 1/5 nodes, mets, ER+/PR+, HER2- Chemotherapy 10/7/2009 CEF Radiation Therapy 4/7/2010 Breast, Lymph nodes Hormonal Therapy 6/1/2010 Radiation Therapy 7/5/2013 Hormonal Therapy 9/27/2013 Arimidex (anastrozole)
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Sep 11, 2009 11:05PM MarieK wrote:

Saw the PT yesterday.  She gave me a few more exercises to try - wall walking as high as my arms will go in front of me and then slide into it and then push out, also laying down on good side with arm stretched out and palm facing forward bring arm up and then fold behind head keeping shoulder down press elbow towards back.  I know it's hard to read these but I have to say they are really helping.

Also she did some manipulation of my scar tissue and also put traction on my cord while she manipulated my arm.

I have to say that the pain in my elbow (where the stretch stress was) has eased off and now I just need to work on stretching out my chest more and keeping my shoulder down.

This PT is not a lymphodema or cording specialist but an experienced PT who has worked with mastectomy patients before.

I hope that others are getting some help with this and working through it too!

8/09 Left Mast 10/09 6 rnds FEC 3/10 28xRADs Tamoxifen+Zometa 9/10 300cc TE 2/11 Allergan 410FX Gummy 560cc&reduce rt breast 1/12 reduce rt again 120 cc 5/13 fat graft 6/13 3cm bone met rt femur 7/13 10xRADs 3/14 fat graft & tummy tuck Dx 7/4/2009, IDC, 3cm, Stage IV, Grade 3, 1/5 nodes, mets, ER+/PR+, HER2- Chemotherapy 10/7/2009 CEF Radiation Therapy 4/7/2010 Breast, Lymph nodes Hormonal Therapy 6/1/2010 Radiation Therapy 7/5/2013 Hormonal Therapy 9/27/2013 Arimidex (anastrozole)
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Sep 12, 2009 06:44AM foxyroxy2983 wrote:

Hi MarieK!

I've tried the wall walking exercise but the other one I can't figure out. Are there any diagrams or pictures of that other exercise because I would really like to try it. Another exercise that my surgeon recommended: you stand and bend over from the waist, let your arm hang (the side where the lymph nodes where taken) and move it around in circles, clockwise then counterclockwise. It really helps, I'm doing better. Thanks for sharing these exercises with us :) 

Sara Dx 5/7/2010, 2cm, Stage IV, Grade 3, 2/6 nodes, mets, ER-/PR-, HER2-
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Oct 14, 2009 12:08AM LindaLou53 wrote:

Bump for Unique

Life is not measured by how many breaths we take...but by the moments that take our breath away! ...I am a 14/9 yr survivor of 2 Primary BCs, 23/23 Positive Nodes (Zometa x 5 years) Started Paloma-3 Clinical Trial 4-14-14 Dx 7/14/2000, IDC, 1cm, Stage IIA, Grade 1, 2/7 nodes, ER+/PR+, HER2- Surgery 8/11/2000 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 8/30/2000 AC + T (Taxol) Radiation Therapy 2/26/2001 Breast, Lymph nodes Hormonal Therapy 5/10/2001 Dx 11/21/2005, ILC, 5cm, Stage IIIC, Grade 1, 23/23 nodes, ER+/PR-, HER2- Surgery 12/5/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 12/23/2005 Taxotere (docetaxel), Xeloda (capecitabine) Hormonal Therapy 4/7/2006 Aromasin (exemestane) Radiation Therapy 4/7/2006 Breast, Lymph nodes Dx 3/21/2014, ILC, Stage IV, mets, ER+/PR-, HER2- Hormonal Therapy 4/14/2014 Faslodex (fulvestrant)
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Oct 17, 2009 08:18PM Bigapple09 wrote:

Hi

I had cording in my arm in the sping, now I have visible cords in my abdomen just under my rib cage toward my side (in the node dissection side) are there any resources for illustrations of self massage on the cords so I can rush this along?

Wendy

Dx 11/2002, 0/3 nodes, ER+/PR-, HER2-
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Oct 27, 2009 01:47PM KAK wrote:

Bump for FYI.  I had no nodes removed, surgery in August 08, radiation a year ago, and I've got cording again in my armpit and along my breast, which just goes to show you that even those of us with so-called early cancer and so-called minimal treatment have to be careful.

Kathi: lumpectomy 8/14/08, finished rads 10/6/08; started tamoxifen 10/27/08, stopped tamoxifen 9/23/09; feel much better now. Dx 7/24/2008, DCIS, 1cm, Stage 0, Grade 3, 0/0 nodes, ER+
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Oct 27, 2009 05:59PM kira wrote:

KAK,

  Some of us are just prone to it: I had a ton of cords after my surgery, and recently saw a new PT who had me start theraband exercises, and within a week--cording!

I'm doing my overhead stretches, child's pose, lay on my back with hands over head, and twist my knees to the side (kind of a spinal stretch), and I emailed Jodi Winicour, the amazing PT at Klose who is an expert on it, and she said to stay the course.

I do the skin lifting stretch in the axilla, as described in the Burt and White book.

It's back....

Hope both of us have it go away soon.

Kira 

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Oct 27, 2009 07:18PM Bigapple09 wrote:

I had a new cording in my tummy of all places, it was very painful. I was doing the massage like the Dr said and when laying down straight, I pulled my stomach in and put my fingers in two places along the cord, applied pressure and slowly moved the fingers away from each other and it actually snapped, it felt like a knot unraveling, the relief was so fast, it took a few more days for all of the cord to fade, but wow what a relief. Now if I could only figure out what triggered it.

Dx 11/2002, 0/3 nodes, ER+/PR-, HER2-
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Oct 27, 2009 07:51PM kira wrote:

BigApple, how were you told to do the massage? Stretch the cords between your fingers?

I know the belief is that surgery or exercise can trigger cording--my bs told me of a woman who had it without any surgery, and they just blamed overuse. Personally, I think some of us are more prone to it.

I was contacted by a PT from Malta (I had to look it up...) and in Malta, they believe that all women who have any axillary surgery develop cording, and all women are sent to PT's.

Kira 

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Oct 28, 2009 09:44PM Bigapple09 wrote:

For the cord in my arm to my chest the PT had showed me a combination of stretching my body to create tension on the cord and then use my hand to put tension on an opposing portion of the cord slowly pulling further apart. This was needed because I could not use both hands to pull on the cord (since part of it was in my arm). with the one in my stomach I took advantage of being able to use both hands. The one in my arm never popped, it just resolved after a few weeks. The stomach one is gone now, about three days after it popped.

The one in my arm comes after airline travel. The one that just happened in my stomach followed me driving 3 1/2 hours to and from Delaware for a soccer tournament, so I'm not sure if it was the seat belt or just not moving for such a long time. Its all a mystery.

There is a condition (name escapes me) where a blood vessel or lymph vessel thrombosis and that resembles cording as well as to appearance and pain, which can occur with or without surgery

Dx 11/2002, 0/3 nodes, ER+/PR-, HER2-
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Oct 28, 2009 09:50PM chelev wrote:

I was wondering why it felt funny under my arm - I had snb in February and have only just noticed what felt like a cord or rope in my armpit.  I am seeing my onc on Tuesday and will mention it to her.

chelev - TC - 2 rounds (allergic!), Rads - 33 rounds. Oncotype score - 27. Tamoxifen, Jan 2010-April 2013 - too many side effects! BRCA Negative. "If we couldn't laugh, we would all go insane" - Jimmy Buffet Dx 2/14/2009, IDC, 3cm, Stage II, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 2/27/2009 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 3/12/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/29/2009 Breast, Lymph nodes Hormonal Therapy 1/1/2010
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Oct 30, 2009 10:58AM - edited Oct 30, 2009 11:00AM by kira

Bigapple,

  Perhaps the condition you were thinking of is Mondor's disease:

en.wikipedia.org/wiki/Mondor's... ">http://en.wikipedia.org/wiki/Mondor's_disease 

To be honest, I never really have understood why it's not cording, but it's primarily venous.

Kira 

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Nov 6, 2009 10:59AM ccnani wrote:

Hi ladies, I hope you don't mind me popping in here, I'm from the November chemo board. I put out a question on my board re. Lymphedema and wearing a sleeve, but I guess no one has encountered any problems yet. I"m 2 months out from dbl. mastectomy with 27 nodes removed from left breast where cancer was and sentinel nodes removed from right. I went 2 weeks ago to get evaluated because I did feel strange pulling in my left arm and hand. I had spilled a little bit of hot coffee on the top of left hand, no big deal but it swelled and stayed swollen for two weeks. The therapist measured and gave me excercises to do at home. She told me to get sleeves for both arms and gauntlets for my hands. She said I should be wearing these whenever I am working with my arms & hands etc.or traveling. She told me she wants me to wear sleeves during chemo because sometimes chemo can start the whole cycle of lymphedema. Im waiting for my sleeves right now. I start chemo on Nov. 17th & hopefully the lymph. won't get started. My onc does not believe in ports unless you have problems with your veins, so I guess they will be doing chemo in my right arm, the one with only sentinel node removal. Has anyone here worn sleeves during chemo or know why or if it is necessary? Any help you can give me will be extremely helpful cause I really don't understand why the surgeons and the oncs don't seem to worry about lymphedema. I really didn't know what it was until that day in the therapist office, I saw this poor little old couple and the little ladies arm was the size of my thigh, she could barely hold it up from the weight of it. It was red and looked very angry and painful!! Thankyou for all your postings and I look forward to see if any of you know about this sleeve/chemo thing. Thanks so much

ccnani Dx 7/10/2009, IDC, <1cm, Stage IIA, Grade 3, 1/27 nodes, ER-/PR-, HER2+
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Nov 6, 2009 09:26PM - edited Nov 6, 2009 09:31PM by Binney4

Goodness, of course we don't mind, ccnani. Welcome!Smile

I'm thinking when you posted this question a couple of days ago here you lost track of the thread it was on -- at any rate, Kira, Toni, and I all posted messages there for you. It's near the end of a thread called "Massage Cautions?",  here:

http://community.breastcancer.org/forum/64/topic/743096?page=1#idx_11

(Sorry, but I'm never able to get links to work that are on this board, so you'll need to copy it and paste it into your browser.)

I'd say your therapist is right on top of this and has given you good advice. When you get the sleeves and gauntlets be sure to go back to her and show them to her so she can be sure the fit is perfect. Here's a page about how garments should fit:

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

As to the woman in the therapist's office with the angry red arm, very possibly she had cellulitis (infection) in her arm, a risk with lymphedema that the therapist will undoubtedly recognize and sent her straight back to her doctor for antibiotics before she can do anything about the swelling.

Unfortunately you're not alone in being baffled by the lack of information your surgeons and oncs have about lymphedema.Frown As you've discovered, our medical professionals have little training in the lymph system, so they're slow to diagnose it, and few doctors care to follow up with their patients about either the risk of lymphedema or its treatment. For that reason we're very much our own advocates. We need to learn how to protect ourselves, and then stand up for our own best interests. Why lymphedema should be the "black hole" of cancer care, I just don't know, but it sure is. According to a recent survey by Dr. Stanley Rockson of Stanford, our medical schools and nursing programs devote as little as 15 minutes to instructing doctors and nurses about lymphedema in their entire medical training, leaving us very much at risk for both lymphedema and its complications. Here's a page especially for professionals that you might want to copy and take to your doctor:

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

Wearing your sleeves for chemo is a great idea if for no other reason than it enforces the prohibitions against using either of your arms, but of course it does also contain any swelling caused by chemo drugs or the drugs used to combat side effects. It's especially important to use compression garments for rads, which often causes swelling that can overwhelm a compromised lymph system. So, brava! for your therapist! You might want to have her consult with your onc about the wisdom of using a port, too -- professional to professional.

By the way, I did read your post the other day on the November chemo board, but since you then posted on another thread here on the lymphedema board I didn't answer you there. The reason no one else in your group answered is because their doctors, like yours, have not given them any information about risk reduction precautions such as sleeves and gauntlets. Here's a page about reducing your lymphedema risk that you might want to share with our bc Sisters on that thread:

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

I hope that helps, ccnani, and I also hope the rest of your treatment journey goes by quickly and without a hitch!

Be well,
Binney

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Nov 17, 2009 11:00PM Neece wrote:

Hi folks, have just read this thread with interest as I have been plauged with cording since mx and axillary clearance on early August. My PT has prescribed exercises and massage for it and it has helped but recurs randomly (seemingly so anyway). last week or so I had two new lumps ultrasounded under my arm - my GP was worried it might be a vein thrombosis but the report came back seeming to suggest 'lymphocele' - a blockage of lymph fluid, which makes sense to me. My husband has been massaging lumps and cords and it does seem to be working as the cords have greatly reduced from lower part of arm and somewhat from under arm area, so we will persevere.

Like others I have been astounded by lack of knowledge of axillary web syndrome in practitioners, even my GP and those massage therapists specialising in lymphatic massage, and I feel I am on a constant education campaign to spread the word!

In hospital I was given a set of gentle exercises to do with my left arm to  reduce risk of lymphodema and my PT has also got me a sleeve with fingers to wear when needed as I have had had some swelling (and i live in mortal dread of developing full blown lymphodema)

I would be interested to hear of anyone who has experienced the types of lumps I described and how you have dealt with them. they were small, pea sized, adn seemed to be located right on edge of cords under armpit. A bit tender when pressed.

Dx 7/29/2009, ILC, 2cm, Stage II, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Nov 18, 2009 08:37PM Bigapple09 wrote:

The cord I had in my stomach had a lump. When I managed to stretch the cord, the place where the lump was, sort of unraveled, almost like a knot in a necklace coming unraveled, there was an instant relief, like a hose being unkinked and the lump went down a great deal right away and the entire cord were gone the next day or so.

I don't remember if the cords in my arm had lumps, the cord in my arm was much deeper in the arm and was not as easy to palpate.

Dx 11/2002, 0/3 nodes, ER+/PR-, HER2-
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Nov 20, 2009 02:41AM KAK wrote:

As a PT who has cording, plus shoulder and breast pain to go with it, I'm very happy to say that I've had 3 PT treatments myself so far, and I feel much better.  I have axillary cording, but I also have tightness from the sternum, up to the clavicle, across the chest, over to the shoulder, and around the back to my scapula.  So, you have to unwind all of that stuff to get the cording to relax.  My PT worked on loosening up the clavicle and scapula, then the neural tension in the shoulder joint that had set in.  Now, I can start actually getting a good stretch again across the chest/breast where it tightened up again.  This is all from rads.  I didn't even have any nodes removed or biopsied.

You do have better luck finding a therapist who has a clue with soft tissue stuff.

Kathi: lumpectomy 8/14/08, finished rads 10/6/08; started tamoxifen 10/27/08, stopped tamoxifen 9/23/09; feel much better now. Dx 7/24/2008, DCIS, 1cm, Stage 0, Grade 3, 0/0 nodes, ER+

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