Different Kind of Cord Question

GryffinSong

"What I don't understand is all the focus on getting people to look normal again with such inattention to being able to function normally again."

Me too. My insurance will pay for reconstruction at any time. But it will not cover the physical therapy I need to deal with the lymphedema and cording. I seriously don't understand.

Momine

Outfield, my onc  told me to use heparinoid gel on the cord. It seems to have helped some. It apparently helps soften the sclerotic tissue a bit. Maybe ask your doc.

mags20487

vanderlady--I am from Melbourne Fl also and read your post.  If you need the name of a PT in the area who specializes in Lymphedema PM me and I will give you the name and number of the one I am seeing.  She has helped me tremendously with my cording issues in both arms.

Maggie

Linda-n3

GryffinSong, I completely agree with the focus on returning to a normal life, not focus on "normal" appearance first.  Insurance will pay for reconstruction, but only a little for prosthetics and minimal for LE sleeve.  I have to get custom-fit because I have such small frame, so that is even more expensive, and they only pay part of it. *sigh* 

Saw my PT yesterday, the cording is 99% better, range of motion surpassed goals, pain less than at baseline (now just deal with it and hope it eventually resolves), and was discharged from PT with lots of instructions, exercises, advice, and she will answer any questions I have by phone or email as I continue working on my own.  Hoping you all continue to improve.  I will check in periodically to see how you are doing. Thanks for the information and support you have shared.

TenderIsOurMight

Pink Heart,

Sorry, didn't log in until today. The surgeon who made the diagnosis at MSK is Dr. Cody: still in practice I believe but I waited to have the "incision" done concomitantly with the chest wall reconstruction and that was done at Johns Hopkins University Hospital by a surgeon who has since left. 

The plastic surgeon was very capable and under direct vision (not blind as is first incision), fully visualized the thick cord to attempt rule out of any visualization of a nerve running through or near it, and then he "incised" it, and with brute force, "lengthened" it by pulling so that it would have laxity upon healing. If he had snapped the cord while lengthening, baring any blood vessel involvement, that probably would have been ok to (i.e., that's a risk factor of surgery) as the goal is to break up the cord anyway. His plastic surgery training and skill gave him good judgement and I am very grateful to him.

Good luck, there is help out there for you. Don't give up, get second, third opinions if need be in your area. Experienced surgeons will have seen this and know how to help.

Tender 

Outfield

Tender, thanks.  I changed insurance recently so I'd have more flexibility to address this.  You don't have to be a plastic surgeon to be able to tell that my problem is not with my skin, as the one I saw said (she didn't even feel it, just looked).  Makes sense to me a little incision over it, removing a little piece from the middle (kind of like a vasectomy!) could make a big difference.

PinkHeart

Outfield~

I've had four opinions over the past 3 months.

So far, only ONE out of four PS even touched my cording! 

On Monday, I have an appt with a fifth PS.  I'm taking a xanax before the appointment.  I'm afraid that if he doesn't fully address this issue and touch/exam the cord, I may meltdown (cry rivers) in front of him.  (Swearing kicks in when I get to the car )  My DH was witness to that during opinion #3, and hopes it doesn't happen again -- he feels my pain, too.

Outfield

Pinkheart, please let us know where you go. I don't want to just randomly flail., but hope there's somewhere closer than Johns Hopkins.  Premeds before an appointment - wouldn't be the first time for me.  Whatever works.

kate2011

PinkHeart and Outfield:

I saw my oncologist a few weeks ago, and told him about the cording.  He is the greatest oncologist.  But he said "that is scarring from the surgery" and dismissed it from the discussion.  (It's not really scarring, by the way!)  I am lucky that my BS is pretty current on research and different problems.  She referred me to a great LE therapist, although she was very surprised that I got cording about 8 months post op.

I have found that the LE therapist understands cording the best.  There is almost no research or understanding of cording in the other professionals I have talked to.  I found limited info on the internet.  There are several ladies here that know much more than I found anywhere else.

The doctors I have talked to seem to be focused on the cancer, and cording seems to be viewed as a nuisance to them, not really a big concern.  Just my experience.

Of course, it's a big concern to me!  I guess I'm not surprised that you've also talked to several people without much progress.  I would not recommend surgery unless you have tried PT with a great LE therapist.  I've had about 10 or 12 sessions so far, and I'm seeing improvement.  I can't see the cords popping out of my arm anymore, although I still have pain.  It gets a little better each time I go to PT.

Good luck & keep us posted.  Sending you both big hugs.

Kate 

Linda-n3

Kate, you are so right on target about the LE specialists.  I saw a PT who had special LE training and she worked with my cording to get it about 99% improved visually.  The NP initially dismissed it, I saw the BS the following week who agreed it might be cording and sent me to PT.  I am still having a LOT of pain in the arm despite it looking better.  Is this still a symptom?  The pain starts the instant the inner side or just slight posterior portion of my arm touches anything, including my own chest, hurts like a you-know-what at that point, then continues to slowly involve the rest of my arm and chest.  I am at my wits end with the pain, but haven't bothered to call the BS again,( just having hateful thoughts that I would like to get rid of, and am sure I will be able to once this pain goes away).  So the question is, does this sound like the pain that goes with cording or is it something else?

I also agree with Kate that surgery should be a LAST option as the PT may be able to help it.  My PT did explain that it is a TYPE of scarring of the lymph vessels, but with gentle traction and myofascial release, it can be treated, much like skin scars can be treated with gentle massage with vitamin E or something.... you just want to keep it from adhesing or attaching to everything around it and pulling on it. 

kate2011

Hi Linda.

You might still have pain from cording.  Sounds like it to me.  You probably have some tissue that is still sticky.  I've had those moments...everything feels fine, then my BF barely touches my arm & I just jump from the unexpected pain.

If you can, go back to your LE PT.  She will be able to tell right away if your tissue is sticking again.

Keep me posted & good luck!

Kate 

Outfield

Kate, both PH and I have done a lot of therapy.  Mine was with a CLT.  The cords that my CLT was able to help with were very different.  Small, about 5 of them.  They were actually way more painful. This thing feels much more like my Achilles tendon than like the little cords.  

PinkHeart

Hi All~

If I have this right, Outfield, Tender, and I have exhausted all LE Physical Therapy options, and have unusual refractory cases of cording.

My fifth opinion today was probably the worst of all because it was coming from a top institution.  Absolutely ZERO compassion.  I have two pain issues:  one from the cording, the other from the way the surgeon at this top institution sewed down my right breast to my pec muscle.  Now my skin below my breast won't move.  It moves just find on the other side that he reconstructed just fine.  So I have restricted movement and discomfort/pain from both areas.  The surgeon today could have at least admitted to the issue below my breast but refused.  I made video of it and sent it before I started radiation, because the rad onc said they would get blamewed for it. 

I also have cosmetic issues related to the massive hematoma that happened in the left breast.  They seem to think it doesn't matter that they don't match and that one is one cup size bigger than the other.  I have to wear camis because the bra rubs the spot where sewn down wrong.  Have to stuff right side of bra because it caves in because breast is smaller.

Is this how it's supposed to be?  Im so jealous of you who have PS who want their patients to be happy and do revisions without their EGO in the way of the patient's well-being.

Sorry to vent.  Too many tears today for sure.  Should have taken two xanax. 

Linda-n3

Oh, Pinkheart.... I just feel your tears.  I can't fix it, but sending you lots of hugs.

PinkHeart

Thanks Linda - virtual hug felt and appreciated

Outfield

Pinkheart, I'm really sorry to hear that. Hadn't been on for  a little while.  I got disgusted for a while, then saw my radiation oncologist today who didn't think I was nuts to want it dealt with and gave me a name.  Unfortunately nameof a retiring guy, but I felt a little better taken seriously.  And whoever asked back there, No, I could no tswim backstroke, could not serve a tennis ball.

PinkHeart

Hi Outfield,

At this point I don't know what I am going to do.  I wish I had energy, time, and more money to be able to get to Sloan Kettering because I did hear back from Tender and was able to get further along with research of a PS who might be able to help with my cording as well as other recon issues.

Don't know where you live or your situation, but if you can go to Sloan Kettering, the name of the breast surgeon there who is tuned in to cording is Dr. Cody (per Tender).  From what I understand, Tender then took Dr. Cody knowledge to a PS at Johns Hopkins who did the surgery for her cording back in 2007, but that PS is no longer there.

So, since Dr. Cody is still at SK, I called there and talked to a nurse who said they have two plastic surgeons there who have worked on cording as well as breast recon.  The names are Dr. Andrea Pusic and a Dr. Joe Pisa. 

Dr. Andrea Pusic is very involved with advocacy for breast cancer patients, as well as programs to study quality of life of women after breast reconstruction.  She would be my first pick without even meeting her.  Just her interests alone spell out COMPASSION to me.  Here is a link to her bio:

http://www.mskcc.org/cancer-care/doctor/andrea-pusic

I hope things work out for you, too.  Please keep us posted if you can.  Blessings!

Momine

Kate, my onc said the cording, in my case anyway, was caused by the chemo. Chemo inflames the veins and can cause them to collapse and become sclerotic. I only got the cording once chemo started up and after the last inflammation attack I now even have a cord on the side where they only took the sentinel.

Further, the rads also cause inflammation in the lymph system.

I was told, byt the oncs, to use hiduroid gel for the inflamed veins, and I have continued to use it during rads to alleviate the inflammation some. 

kira66715

Pinkheart--I re-read your post, and I'm just so sorry that you're not being validated and your very real and very valid concerns are not being addressed.

The tethering of the skin is a huge issue, and so is the "volume discrepancy" and the results after the hematoma.

I think there's a natural--but very unfortunate--tendency for surgeons to not want to deal with problems they've created that they don't know how to fix, and their tendency is to blame the victim--imply that you're ungrateful for all their heroics.

That's just nonsense, IMO.

I work in rad onc, and I mention to women all the time, who have a big volume discrepancy, that we can get them a partial prosthesis and special bra that they can wear when they want to, and it's almost always news to them, and a lot of them take me up on the offer.

My breast surgeon--she of the heavy hands and huge desire for cosmesis--just announced that she spent a month in Paris working with a world expert in oncoplastic breast surgery. So, I look up that surgeon's article on oncoplastic breast surgery, and am horrified at the damage done to the tissues in the name of cosmesis--just my opinion, but I heard Janice Cormier (a surgeon who said "I don't treat LE, I cause it.") speak at the NLN and she really stressed being gentle to the tissues.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1513973/

Check out the illustrations.

Pinkheart, when you have the energy to pursue this again, you have good references now.

Momine: I don't think the heparin gel you used is available in the US

http://www.medicines.org.uk/emc/medicine/5003/SPC/Hirudoid+Gel/

Interesting

Kira

isee

I had a large cord running from under my arm down to my elbow after my second surgery to get clear margins...called a partial mastectomy...but, I would call it more of a second lumpectomy. The cord was significant and tight, it must have been at least an inch in diameter. Very annoying when I tried to do anything with an outstretched arm. It appeared a few weeks after surgery as I was trying to resume exercises especially those that would allow me a full range of motion in the arm on the side of my surgery. I should say that I only had a sentinel lymph node biopsy...they removed 3 nodes I believe. When I stopped exercising, the cording went away. I am almost one year post surgery, have just started exercising again....so far so good....no cording. Just had my first Mammogram post radiation....and am waiting for hopefully an all clear...hope it doesn't take long. I did not have chemo btw...just two surgeries and radiation. I'm not taking tamoxifen. Good luck to everyone who is having this problem...I hope you are as lucky as I have been and it just goes away over time on it's own.

I had Invasive Tubular Carcinoma

Momine

Kira, yes sorry, I misspelled. The active ingredient is heparinoid (in the gel I have, the hirudoid has something else as well), so maybe there is another gel with this ingredient available in the US. it is used for varicose veins and superficial clots, that sort of thing.

Yesterday my armpit ached from the rads and I had some swelling. As an experiment I put the gel on it last night and this AM and it helped.

I am realizing that all the treatment, i.e. chemo and rads, causes inflammation. The docs don't seem too bothered by this, but I have a feeling that the severity of the SEs might be reduced a whole lot if the inflammation were managed better. I am pretty sure that the cord and LE on my sentinel side is entirely due to the massive inflammation attack after the last taxotere TX. 

kira66715

Momine, some of the most exciting research is coming out about inflammation and LE, and the ability to predict it--with a panel of biomarkers, and TREAT it, with very specific anti-inflammatory drugs.

LE is a disease of inflammation.

I've been in touch with the researcher, and can't wait for the studies to be published. 

That's why--no science here--I really believe there are periods of risk when our bodies are inflammed.

Because I work for a rad onc, he bought me a textbook of how to medically manage oncology patients, and there's an entire chapter on "illness" in cancer, and how it's inflammation.

Glad the gel works. It seems to be available in the UK, but not the US

http://drugs.webmd.boots.com/drugs/drug-231-heparinoid.aspx?drugid=231&drugname=heparinoid&istictac=false

Kira

Linda-n3

Momine, I think there was some evidence that risk of LE is increased with exposure to both chemo and rads together.... and I don't remember if it is as increased with chemo and rads sequentially.  But it makes sense that if BOTH are causing inflammation and the LE and cording are related to that, then you would expect more with more inflammation. 

Kira, what was the book your rad onc gave you? 

I was teaching a course on drug-induced diseases this semester, and have been doing more research into the primary literature on these issues.  Unfortunately, I have had to cut back my work load, so my dept. chair gave that course to someone else to teach.  It was an evening course and I just don't have the energy reserves to "do it all" right now.  I am disappointed, but he reassured me the course will be there next  year.  So for now, I just keep my eyes open for more information to include.

kira66715

Linda, it's on my desk at work--I'll get the info and pm you.

Drug induced diseases--fascinating course. I used to share an office with a PhD pharmacist, and I borrowed her reference books like crazy--they were great. It was over 10 years ago, so she had books, not databases....

Kira

Momine

Kira and Linda, thanks for confirming my hunch. I will keep on trying to reduce the inflammation. 

Linda-n3

Rough day with arm pain today.  Just frustrated trying to get my lecture ready for tomorrow and having pain every time my sleeve moves with typing.  Whine, whine whine.... no, WAIT!  I need WINE!!!

Linda-n3

BTW, I have not been taking any NSAIDs or other antiinflammatory meds because of increased risk of bleeding while on Effexor for neuropathy.  I am coming off it gradually as I just can't tolerate the SEs any more, so maybe I will give the Aleve a try.

kira66715

Linda, you're a drug expert--what's unique about ketoprofen? Just asking....

http://www.ncbi.nlm.nih.gov/pubmed?term=ketoprofen%20lymphedema

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2791214/?tool=pubmed

Methods and Findings
Lymphedema was induced by microsurgical ablation of major lymphatic conduits in the murine tail. Untreated control mice with lymphedema developed significant edema and extensive histopathological inflammation compared to sham surgical controls. Short-term ketoprofen treatment reduced tail edema and normalized the histopathology while paradoxically increasing TNF-α gene expression and cytokine levels. Conversely, sTNF-R1 treatment increased tail volume, exacerbated the histopathology, and decreased TNF-α gene expression. Expression of vascular endothelial growth factor-C (VEGF-C), which stimulates lymphangiogenesis, closely correlated with TNF-α expression.
Conclusions
Ketoprofen therapy reduces experimental post-surgical lymphedema, yet direct TNF-α inhibition does not. Reducing inflammation while preserving TNF-α activity appears to optimize the repair response. It is possible that the observed favorable responses, at least in part, are mediated through enhanced VEGF-C signaling. 

Linda-n3

Kira, saw your post and am intrigued.  Unfortunately I am brain dead tonight - not quite done with lecture prep for early am class.  Will check back here tomorrow and see if I can understand exactly what they found.  These upregulations and downregulations of receptors and stuff really can get confusing.  Like the tamoxifen that acts like estrogen in some tissues but blocks estrogen in other tissues.  The body is an amazingly complex problem, which is probably why I enjoy learning so much about it.

carol57

I was wondering the same thing about ketoprophen. I read Rockson's study report and it seemed there was a comment suggesting that the choice of ketoprophen was almost a fortunate accident; he did not really explain what led the research team to suspect that particular drug would prove effective.  I have two PharmDs in the family and can ask one or both to investigate the drug characteristics, if that would be helpful.