Different Kind of Cord Question

carol57

Here's the comment that stuck in my mind after reading the study report:

'The selection of ketoprofen as the agent-of-investigation may have been fortuitous, insofar as the NSAID class of drugs exhibit myriad pharmacological characteristics, with agents of varying IC50s and degrees of COX-1, COX-2, and COX-independent mechanisms of action. '

Maybe I'm reading too much into that statement, but the term 'fortuitous' made me think that there was as much luck as purpose in the drug choice.  I have no clue on earth what the rest of the sentence means...! 

Momine

In addition to baby aspirin and turmeric, I am trying to eat foods with high anti-inflammatory ratings. As far as I can se those are mainly fatty fish and mussels, greens, onions and hot peppers of various kinds.

kira66715

Carol, he has indicated that to me, when I asked him if other NSAID's would work as well. Apparently, not only do they not work as well, they cause swelling. He has research studies on women completed, awaiting publication, and I am eagerly awaiting them.

He called it serendipitous.

Kira 

carol57

I will happily take a serendipitous nsaid if it helps with this crazy condition. Serendipity rocks! Do ypu have any clue when the new study will be published?

kira66715

Hopefully this year: sometimes there is a lag between submitting a paper and the publication. But I think we've come up with some good clues based on the animal research and I know the human trial was a success.....

Kira 

kira66715

Okay, this popped up but I can't get ahold of the article

http://circ.ahajournals.org/content/early/2012/01/24/CIRCULATIONAHA.111.083477.abstract

Editorial
Lymphangiogenesis: A Potential New Therapy for Lymphedema?
John P. Cooke*
+ Author Affiliations

Stanford Cardiovascular Institute, Stanford, CA
↵* Corresponding author; email: john.cooke@stanford.edu
Abstract

At the level of the capillaries, the systemic circulation loses about 2-4 liters of fluid and about 100g of protein into the interstitium daily. This ultrafiltrate of the systemic capillaries is returned to the circulatory system by the lymphatics. The lymphatic vasculature is highly specialized to perform this service, beginning with the blind-ended lymphatic capillaries. These vessels are highly permeable to protein, fluid and even cells, due to fenestrations in their basement membrane, and discontinuous button-like junctions rather than tight intercellular junctions as observed in the systemic capillaries1. The lymphatic capillaries merge into collectors and larger lymphatic conduits that are invested with vascular smooth muscle (capable of contracting and propelling lymph forward) and valves for unidirectional flow. These conduits merge at lymph nodes, delivering antigens to the immune cells and serving as an early warning system of pathogen invasion. The lymph nodes drain into conduits that ultimately merge into the thoracic duct which empties into the left subclavian vein.

Maybe this is the article in question:

http://circ.ahajournals.org/content/early/2012/01/24/CIRCULATIONAHA.111.030296Original Research Article
9-Cis Retinoic Acid Promotes Lymphangiogenesis and Enhances Lymphatic Vessel Regeneration: Therapeutic Implications of 9-Cis Retinoic Acid for Secondary Lymphedema
Inho Choi1; Sunju Lee1; Hee Kyoung Chung1; Yong Suk Lee1; Kyu Eui Kim1; Dongwon Choi1; Eun Kyung Park1; Dongyun Yang1; Tatiana Ecoiffier2; John Monahan1; Wen Chen1; Berenice Aguilar1; Ha Neul Lee1; Jaehyuk Yoo1; Chester J. Koh3; Lu Chen2; Alex K. Wong1; Young-Kwon Hong1*
+ Author Affiliations

1 University of Southern California Keck School of Medicine, Los Angeles, CA;
2 Ctr of Eye Disease and Development & School of Optometry, University of California, Berkeley, CA;
3 Children's Hospital LA & Univ of Southern California Keck School of Medicine, Los Angeles, CA
↵* Corresponding author; email: young.hong@usc.edu
Abstract

Background-The lymphatic system plays a key role in tissue fluid homeostasis and lymphatic dysfunction due to genetic defects or lymphatic vessel obstruction can cause lymphedema, disfiguring tissue swellings often associated with fibrosis and recurrent infections without available cures to date. In this study, retinoic acids (RAs) were determined to be a potenttherapeutic agent that is immediately applicable to reduce secondary lymphedema.

Methods and Results-We report that RAs promote proliferation, migration and tube formation ofcultured lymphatic endothelial cells (LECs) by activating FGF-receptor signaling. Moreover, RAs control the expression of cell-cycle checkpoint regulators such as p27Kip1, p57Kip2 and the aurora kinases through both an Akt-mediated non-genomic action and a transcription-dependent genomic action that is mediated by Prox1, a master regulator of lymphatic development. Moreover, 9-cisRAwas found to activate in vivo lymphangiogenesis in animals based on mouse trachea, matrigel plug and cornea pocket assays. Finally, we demonstrate that 9-cisRA can provide a strong therapeutic efficacy in ameliorating the experimental mouse tail lymphedema by enhancing lymphatic vessel regeneration.

Conclusions-These in vitro and animal studies demonstrate that 9-cisRA potently activates lymphangiogenesis and promotes lymphatic regeneration in an experimental lymphedema model, presenting it as a promising novel therapeutic agent to treat human lymphedema patients.

I'll see if I can get this article, but all I know about retinoic acid is retin-A and accutane....

Kira

PinkHeart

Hi all~

Am still in the midst of researching and getting surgical opinions about my cording.  I wish I could figure out how to post a picture of my lovely axilla with it's alien visitor (cording). 

When I have more answers I will post back here. 

This past week, I have emailed my pictures (of breast recon complication and axillary webbing/cording) and had phone calls so far with four awesome plastic surgeons or their surgery or research nurses from Texas, Florida, Michigan, and soon Maryland.  Two of these "top" surgeons told me they had not had experience with surgery on cording, but referred me to others that more than likely have.  So far the internationally known Michigan plastic surgeon has worked on four cases of cording.  (I went ahead and set up an appointment with him, and it's only a 4 1/2 hour drive)  I will know more about the Maryland surgeon once I send my info.  After dealing with my initial surgeon who won't even talk to his own patients, I am finding trust again in medical world just from these docs and nurses giving their time to listen and be empathetic to my situation without even meeting me.   

Just came across this today.  Check out this very nice patient education booklet (Canadian Cancer Society) for breast cancer patient's post-surgery recovery and exercise -- it even has a page on AXILLARY WEBBING SYNDROME!    First ever for me to find so that's why excited.  

Well can't seem to copy the link here -- so need to Google:   Canadian Cancer Society, Exercises after Breast Surgery, a guide for women

Blessings!

Outfield

Pinkheart, I so am so glad you're making progress.  With my new insurance, I can go anywhere although less of the total of my care is paid-for than with my old insurance.  So if I exhaust things out here in the boonies, I definitely want to look into seeing someone who has addressed this kind of thing before.  

I myself am more and more frustrated with my big honking cord.  The root of it gets so sore when I do anything that pulls it taut.  Then I get a few days of being sore.  Can't be good for the lymphedema.  But I'm still doing stuff.  Going to try to get up my motivation to go the pool tonight.

Outfield

What a difference a physical exam can make.

I saw a second plastic surgeon today.  She talked to me with my clothes on, got a history, then came back and examined me and said I didn't have at all what she was expecting to find.  Unlike the first plastic surgeon who told me she saw it often but didn't actually touch me, this one said she'd never seen something like this before.  She did a much more thorough exam, plucked my skin up over the thing, really followed it over its whole course.  

She thinks (without my prompting her to think this) that it's related to the lymphatics, but isn't sure what to do about it.  She's going to talk to surgeons where she trained.

I don't feel especially optimistic about how much she'll be able to help, but I am so glad to have had a surgeon actually examine me and affirm my observation that this thing does not involve the skin.  This is a step in a right direction.

Thanks you all for being on this board.  It's a lot easier to push through my little personal struggles when I know there are other women out there struggling with ignorance (which I can forgive) and denial (which I cannot) of these treatment-related problems. 

  

PinkHeart

Outfield~

This is great news even if not a definite answer to the problem!  I know this may sound silly, but I'm also impressed that the doctor talked to you first with clothes on.  My ob-gyn ALWAYS comes in to talk first while I'm fully dressed in street clothes.  I just feel more comfortable and more intelligent talking with normal clothes on first.  Even the gown makes me feel wimpy.  I've seen several PS now, and nurse just tells you to put on gown and wait for doc.  Guess they're trying to save time. 

Do you also need revision to your affected breast?  Did the PS talk like making it a team effort?

Outfield

I don't need revision of the scar.  I was told before my BMX I would probably need scar revision - all along I have been pretty adamant I didn't want reconstruction -  but my chest actually looks pretty good without it.  I really just have the big cord problem.  I know yours is more complicated.

PinkHeart

Outfield,

Believe me, after all this recon mess, I wish I'd not done anything or had gone with delayed recon . . .

Momine

Outfield, I got cording during chemo, and one cord is still very pronounced in the armpit. My onc said it was veins and possibly lymph vessels that had died from the chemo. I don't know if that is relevant in your case. He said that it is the inflammation from the chemo that does it. Now why the @&$) they don't do more to control the inflammation in that case beats me.

Outfield

Well, here I go!

Plastic surgeon #3 agreed with #2 (they are the two who actually examined me), this is not a common problem, as with #2 he's never seen it before.  He said "Do you want to be an experiment?"  He thinks it's a vessel that clotted around surgery, then became inflammed during radiation and created a big rope of scar tissue.  Kind of what I think, kind of what #2 thougth, but he's willing to try releasing it by cutting out a little piece in the middle.  I didn't want to be an experiment when I thought this was something other people had dealt with, but now I'm willing to do that.  Would like to have this released.  I'm set for mid-April. 

He was yet another provider who asked about the lymphedema and seemed aware of it (add him to my rad onc, my BS, and the anesthesiologist for my knee surgery on Halloween).   

Linda-n3

Outfield, glad you are making progress, albeit slow, with the surgeons.  Keep us posted.  Hope it solves the problem for you!

PinkHeart

Outfield~

This is good news for you that PS#3 is willing to help you get release and more of your life back!  Did he say how long it would take and if out patient?

I see the plastic surgeon at Johns Hopkins this Monday, March 5, and will also post what he says about my cording.  I mailed full CD of pictures (breasts before & after and cording) and med records last week.  During phone consult, he said he has experience working on cording, rebuilding chest walls, breast reconstruction (microsurgery/free flaps), and more.  I will be asking how many cords he has done for sure. 

I will also be asking what the heck is entwined in this hunky cord -- nerves, arteries, veins, lymphatic vessels, fibrosis??  Can't wait to know what it is, and can't wait to get rid of it. 

I believe my surgery involves both the cording and re-reconstruction of right breast so will be more complex.  I may ask about doing the cording first/alone to get it over with.  Because my breast was radiated after a full-one step implant immediate reconstruction, most surgeons say to wait a year.  I also have heart history so he may even turn me down for all I know.  About the third sentence out of his mouth was:  Do you have any medical conditions I need to know about?

I'm starting to get anxious already.  I do feel better knowing that my brother is picking me up at the airport, taking me to Inner Harbor for dinner, and then to hotel.  (He lives 2 hours away in NJ/Philly area).  Other brother in DC can't make it.   I haven't seen him in years, so happy part of trip and not just all medical.

Take care and please keep us posted.

Outfield

He said he thought it would be pretty simple, maybe 1/2 hour surgery as an outpatient.  I am so happy to have been taken seriously.  

Outfield

Well, I posted this part earlier in the insurance forum too.

My surgery is scheduled for 4/17, but my insurance has decided they are not going to pay for it. I am flabbergasted.  Both my PS and I think it ironic that if I had decided to have a reconstruction, they would have been saddled with a much larger bill they legally would have had to pay.  

Grrrrr.

I am probably going to do it anyway and just pay for it.  I want to be able to do things comfortably, and I don't want this sudden yanking reminder when I reach suddenly.  It's like the thing says "Hey!!! You had BREAST CANCER!" when I'm right in the middle of something I enjoy.  

PS does not think it has much chance of worsening my lymphedema, which is really well-controlled, and he actually asked, without my even prompting, if I had had any nodes removed on the other side!  I did have one, but told him I've been using that arm for things like IV's (believe me, that's a decision I've thought about).  He looked relieved.  I was just so impressed he asked.  Everyone I have encountered at our way out in the middle of nowhere academic medical center has been very respectful and matter-of-fact about it.

I know that's a discussion in itself that's on a whole lot of threads, but my decision has been to do that.   

Please let me know if you have any insurance ideas. 

Anonymous

Hi, Outfield - The 1998 Women's Health & Cancer Rights Act entitles you to certain rights if you have had breast cancer. I had to document so my insurance would approve, but they had to cover the cost of removing my implants and deconstructing because I had issues with pain. My doctors and therapists forwarded records that showed I had tried more conservative forms of treatment but they had not worked. They also documented how my problems affected my quality of life, as it limited what I could do, I was not functioning well, the chronic pain was causing depression and I had been taking an antidepressant. My doctors and therapists were my best allies in getting my surgery covered.




The WHCRA says that insurance has to cover "treatment of physical complications at all stages of the mastectomy, including lymph edemas". I would think if your doctors and therapists provide documentation demonstrating you have tried various treatments and they have not been effective in remedying, and this cord is still causing limitations (and pain?) that they would have to cover a surgical procedure if it would bring you relief. Here is a document that gives some Q&A's about coverage. I can't find actual Act online, but perhaps someone else has it or can offer other ideas. By the way, the 1998 WHCRA is one of the documents my appeal advocate used to make the case that my insurance had to pay for a lymphedema garment.




I wish you luck in getting your insurance to approve. It definitely wasn't fun fighting with mine to get surgery when I had chronic pain. They dragged their feet for four months until my surgeon finally said to her assistant to just schedule my surgery and they would work it out. They didn't approve until a week before surgery was scheduled. What a PIA and so stressful.




http://www.dol.gov/ebsa/faqs/faq_consumer_womenshealth.html

Outfield

Tina, thank you SO much.  I knew there was some kind of legal mandate, but had no idea what it was called or where to find it.  My condition certainly fits your quote.

PinkHeart

Hi Outfield,

I PMd you, too.  Hopefully, you can get some answers/advice from other BC sisters here!  This is ridiculous for insurance to deny.  I just wonder if it's a problem because a PS is doing it instead of a general or orthopedic surgeon? 

When you called the insurance company, did you ask if it would be covered if you chose to do reconstruction after all?  (I'm just throwing this out there, not suggesting you should do it.)  The insurance company is saving major $$$$$ since you chose not to have recon surgery, especially something like an LD flap, or a DIEP.   

Something seems off here with this insurance denial.

Anonymous

I have learned that my insurance co tries to avoid paying for many things that ultimately will save them a lot of money. They do this across the board with people with all sorts of problems. My appeal advocate told me that only 7 or 8% of people who have prescriptions for lymphedema garments denied will appeal. I went to second level appeal and they finally overturned decision and approved. They had to pay for several doctors to be part of committee to be present for an appeal meeting. You know the cost of this was more than my garment. My point is, for the small amount of people they have to shell out extra money and give in, there are many more cases where people will roll over and give up.




When it comes to the WHCRA, you definitely have rights and just need to document. Even if the doctor you want to use is out of state, they may still be considered in-network if they and the hospital where they operate have a contract with that particular insurance co. In my case, the doctor was not in-network, but the hospital was. I think this gave my insurance more opportunity to argue since I could have had my surgery done by local in-network surgeon instead (my choice of particular surgeon was related to best LE care). Insurance paid for all hospital-related part of surgery, but I was responsible for my out-of-network deductible before they would pay anything for surgeon. Anyway, you can find out from insurance company if doctor and hospital are considered in-network even if they are out of state. The customer service folks should be able to assist you with this or steer you to person who can.




If you are using a PS, they might question for cosmetic reasons, but if you can prove you have searched for doctors all over the country that can help with this particular problem, and your doctor is one of few best suited for your situation, then they should allow. Your PS will probably have to argue why this procedure will help you. He can combine this with your PT's measurements for range of motion, description of cord being of unusual size and nonresponsive to treatment, your pain level 1-10 (do NOT minimize as "discomfort" or "causes difficulty", etc, rather, report how painful it can be at its worst, pain meds you must take, how it causes problems with activities of daily living. They don't care if you can't serve a tennis ball, but if you have difficulty washing your hair, dressing, doing housework, reaching for things in overhead cabinet, etc. then it is more of a functional issue and quality of life. If your primary or another doctor has been prescribing pain meds, their records should be submitted. Any other therapist who has worked to help you and can also document how the cord impairs your functioning should have their records included. Any psychological distress caused by chronic pain or limitations that effect how well you function and prevent you from adjusting and returning to a more normal life, required antidepressants, should be part of records submitted. Your PS or whoever does your surgery should be able to make a case for you with this info.




You may have to do some of the legwork and frequently call insurance co to follow up once your PS has agreed to argue your need for the surgery (medical necessity). It is a pain for the doctor's office staff, but that's what they are trained to do, to know how to submit request with proper codes. If you have a good rapport with the surgeon and he is understanding and compassionate about your problem, he will be more willing to go the extra mile for you. All requests and codes should be clear in that they are mastectomy related. According to the WHCRA, if an insurance co pays for mastectomies, then they have to pay to resolve problems resulting from a mastectomy. This is your right, and they legally are responsible. They may try to make it really difficult for you, wear you down, but don't let them!

Outfield

Thank you everybody. It got approved so I won't be paying out of pocket,yay!  The info here was extremely helpful

 Surgery is Tuesday, shouldn't take long.  I'll try to take some before/after pics.  I'm excited to get it done, 

carol57

Confetti, balloons, champagne corks!  Great outcome, and best wishes for Tuesday!

Binney4

Hey, hey! Chocolate too!

Smooth sailing next Tuesday,
Binney

olearca

Joining in to wish you well on Tuesday!! 

And sending chocolate!  Lots and lots of chocolate. 

BeckySharp

Outfield--Way to go!  Now you won't see dollar signs wasting away in your dreams.  Let's get through Tuesday.  You will do well!  We don't have Trader Joe's here for me to get chocolate but we do have Godiva!  One coming your way.  Becky

PinkHeart

Outfield ~  That is great news that insurance approved!!!  

Wishing you a very successful surgery and easy recovery!   Please let me know where & how you post your before and after pics.

Outfield

I was going to wait until I was further out to post, but I am just so excited.  My surgery was this past Tuesday, and it was a breeze.  Took maybe 20-30 minutes.  I was wide awake with a local, felt a lot of digging and snipping, and got to see my snaky little nemesis.  It looked a lot like a fresh earthworm, minus the segments.  Pink and smooth and glistening, long.  He said it had retracted after he cut it out, so wasn't as long lying on the Mayo stand as it had been before he removed it.

I am just elated.  I felt it release during the procedure.  I've got the 90-degree precaution for a while longer, but even now if I lift my arm up just a little from my side and slide my fingers into my axilla, it feels so normal.  It is so hard to resist lifting the arn further!

No change in my lymphedema, continues to do well.  At this point, I'm optimistic I made a good choice. 

BeckySharp

Hey happy to hear all went well Outfield.  Continue to have happy healing!  Calls for a chocolate brownie with extra chocolate chips in it!