Different Kind of Cord Question

Outfield: cords are clotted off lymph or blood vessels, and do typically feel like piano wires. What you are describing sounds like a scar, IMO.

Lymph can't move through scar tissue.

Perhaps treating it like fibrosis might give some relief, along with the soft tissue work you're doing.

My "go to" expert is Jodi Winicour PT of Klose Training--she lectures nationally on axillary web, and she's never mentioned surgery for cords, and actually admonishes against popping them on purpose. But, again IMO, this doesn't sound like a typical, piano wire cord.

Please let us know what they find on the MRI.

Kira

I had what you are describing, Outfield and it had to be incised to get relief from pain. 

Mine started at time of needle aspiration biopsy (5 aspirations), which resulted in a cord soon developing from the biopsy site up to the armpit area. Further surgery (lumpectomy then mastectomy) only worsened this cording, which in addition to small toothpicks down to my antecubital fossa on the involved side and under the axillary flap, thickened to a tight, and very long stretched cord from the operative site all the way up to my shoulder's acromian process and under my axilla. Heat, ibuprofen, stretching by climbing the wall, manipulation: nothing resulted in its regression.

The cord's persistence and width/firmness perplexed the doctors so much they sent me to Memorial Sloan Kettering surgery who confirmed it as grouped lymphatics and probably lateral thoracic vein (lymphatics, veins and arteries run together). It was "incised" very carefully under general to ensure no artery was included and the pathology returned as "fibrotic tissue". I think they removed up to half an inch or so, and the pressure pain on the shoulder was immediately relieved. 

Most of these cords do respond to tincture of time and fibrous message, sometimes trained therapist "snap" them (pretty similar to breakage of an incision as I had). But sometimes the thrombotic and obstructed vein and lymphatic are so intertwined that the cord is wide and taunt and merits an incision. 

I still have some problems with the old nubs where it was incised as they are painful, as well as in the axilla. But the incision helped tremendously. I do have lymphedema of the involved side, which came after mastectomy.

Hope this helps some.

Tender 

Tender, so good to hear from you again.

Just one question: even though they clinically felt a clump of deep collectors and the lateral thoracic vein were involved, the final path read "fibrotic tissue"--almost like an adhesion.

I did post on some of the path found when Mondors or Axillary web are removed--because there is overlap between the two:

http://community.breastcancer.org/forum/64/topic/766146?page=1#post_2592470

Here were a couple of the path results

A biopsy specimen revealed that subcutaneous vessels were obstructed by organized thrombi and that the vessel walls were replaced by fibroblasts. Narrow recanalized lumens were seen in the area of organized thrombi (Fig. 2a). Weigert staining detected few elastic fibers in the affected vessels (Fig. 2b). Cells lining recanalized lumens and lymphatic vessels in the stroma were positive for D2-40, a specific marker for lymphatic endothelial cells (Fig. 3).3 Based on our clinical and histopathological findings, we made a diagnosis of Mondor's disease arising from lymphatic vessels. 

And

The histopathologic findings clearly showed thrombophlebitis in 14 patients, a lesion originating in the lymphatic vessel in one patient, and sclerosis that consisted of the artery together with veins in another.

Thanks again for posting, I always learn so much from you.

Kira

If you haven't already, you might want to ask your surgeon if s/he is concerned about a blood clot in the axilary vein. A doppler ultrasound is used to evaluate this.  (Unfortunately, if there's a lot of scar tissue, the test can come back inconclusive.)

I had 7 or 8 surgical procedures, more seroma aspirations than I can remember, and high dose radiation to my axilla & arm. I ended up with a very thick cord in my axilla (2 inch in diameter), a golf-ball sized inflammatory mass and a non-healing wound in my axilla (and BPN and LE). The mass/wound was treated with 4 or 5 incision & debridements, antibiotics and high dose anti-inflammatories. It took almost a year, but the mass slowly subsided, and I didn't need a skin graft.

With time, stretching, kinesiotape, a lot of work by LE therapists (myofascial release, stretching, deep massage), the thick 2" cord "broke" into many smaller (1 cm) cords that later broke into even smaller cords. It's been 2.5 years, and I still have the smaller cords, but they don't limit my ROM too much. Even though I religiously stretch twice a day, the area slowly gets tighter, and every 5 or 6 months, I seem to need a professional to loosen things up again. KS1

What you are describing is exactly what I have.  My PT called it cording as well. 

Good to know.  Thanks for the info.  Yoga has done a world of good for me for this. 

Hi,

I had my double mast, immediatel recon w/direct one stage implant, and lymph node dissection at Mayo Clinic.  I have numerous complications which includes this axillary webbing syndrome (that I was never informed about that could be a risk).  Was informed about lymphedema, but I ended up with truncal lymphedema (only informed about armlymphedema). 

I have had 50 physical therapy seesions with highly trained lympedema specialists.  The "tree trunk" that sprouted from my axillary dissectiono incision is permanet. They manipulated released numerous separate loose cords that went to my elbow and wrist; however, the big thick trunk remains six months post-surgery AND 50 PT sessions.  I have numerous complications that I will be having revision plastic surgery for.

However, the BS at Mayo said it could not be surgically removed and that I was the first patient to ask her this.  I am now being referred onto a senior plastic surgeon there (not same one who did orginal surgery) and have a consult next month.  And of course I will be asking about surgical removal because it causes much pain in addition to the rest of my mess.  I actually think I "ripped it last month because I spent two weeks in intense pain. 

I did finally find a local plastic surgeon in my home city who said when he does all the other work on me that he can surgically remove it.  He does breast reconstruction and is the medical director of a tier one burn/trauma center where he has extensive expertise working on burn victims including specializing in plastic surgery of "axillary contracture" where the patients arm has "webbed" fromthe burn.  I am hopeful about this opinion, but at the same time feel like a guinea pig.  I know that just having to have more surgery on the affected side puts me at more risk for lymphedema anyway, but the pain and restriction of movement is screwing with my QOL also.  I am very active (or was until BC Dx).

The fact that you had this done at Sloan Kettering is promising for me.  Do you mind sharing the name of your surgeon?  Can you PM me please? 

Hi Momine,

This in new news to me, too.  I didn't have chemo so mine solely related to the lymph node dissection.  It had started growing around week 3 post-surgery.  I didn't start radiation until week 8 post-surgery.  I have been using creams galore.  I am 5 1/2 months post-surgery now, and the PS that I just recent opinion from said it is not going to go away at this point and that it is solid scar.  I'm still hoping to hear about the surgeon at SK . . .

I would really appreciate it, if you would report back about what the surgeon says. 

Yeah, I think you have a point there. The thing is that my surgeon swore up and down that I would have NO problem on the left (SN side) and that his techniques are so excellent that I shouldn't worry about the other side either. Ha! Anyway, thanks very much for the good counsel, it is greatly appreciated.

Hi Tender ~

Was the surgeon at Sloan Kettering a breast surgeon or plastic surgeon?  Do you mind giving out surgeon's name?

Thanks!

Hi Outfield~

I keep overreaching and feel like I am "tearing" this thing out of my armpit.  Last time I did it, I spent two weeks with the knife feeling there.  I just did it again two days ago so I'm feeling a little angry about it right now.  I had to take an oxycodone by 3 p.m. today and I usually don't need it until 8 pm.   Your doctors comment "We see this far more often than we'd like to admit" irritates the hell of me.  IMO she should research it for you, and try to find someone who can help give you your QOL back.   

Do you think you could serve a tennis ball with that arm?  Swim the backstroke?  How many yoga positions can't we now do and have to improvise?  For me, It's not just dealing with the limitations of this, it's the PAIN.  It's already caused damage to my shoulder.  I have the pain from the complications of breast reconstruction on my right breast along with the pain from this "rare" case of extreme axillary cording that, 6 months post surgery, is still refractory to 50 PT treatments/sessions.  It's not going to go away.

If you would like, I can PM you with the surgeons name that I found in my city that said he can do it.  I already have to have major Re-reconstruction surgery and he is doing it at the same time.  I am still seeking a second opinion with a senior surgeon at Mayo on January 16.  And I have a nurse at Sloan Kettering who is researching for me to find the doctor there that can do it.  I will keep you posted if you are interested.

Pam~ Sorry to hear, too, that you have the axillary cording that doctors are not informing their breast cancer patients that it is a possible risk resulting from the lymph nodes being surgically removed.

I personally would try the lymphedema PT.  You may want to ask how they received their certification for treating lymphedema.  Was is through a weekend workshop, or through the 2-week program at Klouse or Barton?

Please keep us posted -- this topic needs recognition and answers even if we are a minority suffering a rare side effect of breast cancer surgery.