Cording/Lymphedema One Year Later??

Rockym

My experience is that we can "try" to prevent it, but if it's gonna happen, it's gonna happen.  I know that sounds bad, but heck I even worked out a plan with my BS to only take a few nodes with the thought it would lower my risk... nope.  I have read that the precautions are FOR LIFE.  I've had cording 3 times since Aug. 2011.  Right now it is in the top part of my hand.  It was at the scar line, but has subsided.

Needless to say, I'm off to get a sleeve and gauntlet in case I have to fly or feel I need it in the future.

Jennie93

You know what, I think you are right.  If it's gonna happen, it's gonna happen.  I am sick and tired of feeling like some kind of invalid.  It's been a month now since my surgery and I think it's time to quit being a wuss and get back to my normal life.  I still have the cording and pain but maybe I just need to accept that is the new normal and get over feeling sorry for myself.  I'm not going to live in constant fear of LE anymore.  Sure, I'll offer the right arm if someone wants to take my BP, and carry the heavier things with the right arm, but no more obsessing about it.

Denise-G

You girls made me laugh and inspired me!  Thanks!  I deal with mild LE every day, but like my LE specialist said, since I live in Ohio, things will settle down quite a bit over the winter and my lymphatic system will start healing a bit from Radiation and find a new way.    Just last night I thought to myself that I am tired of worrying about this stuff.  Just get on with it.  And like JENNIE93 said, accept it as the new normal!   I will do what I can - exercises and stretches and massage, and I can't control the rest.  Surgery has been almost a year ago for me. 

PinkHeart

Kira

Do u have the link to the diagrams that are n your posts?

Thanks!

Rockym

Jennie93, my cording has subsided for now, but I still have a strange sensation in my wrist and hand.  I just try to tell myself that whatever is going on, is working it's way out of my body.  I live in in hot climate and prepared my lawn for winter grass.  I am sure I over did it.  My entire body is sore, but if my arm didn't flare up on that crazy stunt (should have let my gardeners scalp the lawn), I am hopeful.

Denise,  I wish I know if the lymph system rewires itself like other other parts of our bodies do.  Our weather is finally cooling down, so it will be interesting to see if things get better.  I am used to the larger breast now, but I would love to magically have some good bras that feel great and make both breasts look good.

jpmomof3

H ladies. Sorry you guys are dealing with this stuff too. I feel just like you guys about this. My cording is massively better after the therapist broke a bunch of them in my forearm. The thicker cords in my upper arm and axilla relaxed and I have no pain and normal range of motion now. I am stretching and trying to prevent them from coming back. But the fear of LE was consuming me for a couple of weeks. After having those cords broken my forearm got mildly swollen. That is apparently right where LE would show its ugly self first. It hasn't come back and I am exercising heavily now. Fuck it. I am doing what I want and if I have symptoms I will deal with it. I am with you all, yeh, get the BP done on the other side and the blood draws etc. but I am not wearing that damn sleeve unless I need to. I will wear it if I fly though.



I don't know if the lymphatics re-route. As far as I know if it does it is very limited and if the nodes are gone it makes it hard, I only had five taken out but it doesn't take much. It was disheartening to see how few nodes most of the ladies on the LE threads have had removed. I too am sick of being an invalid. I hate having to ask people for help lifting a Costco pack of water or whatever. Fuck it I am doing it. I am also exercising regularly to keep my arm used to it. I think it was carol on the LE thread that went kayaking recently... We can do a lot even with diagnosed LE and control it. We didn't want this we didn't want any of it. But here we are.

carol57

Ah, but I went kayaking after months and months of working with weights in a gym, with a trainer who has been brought up to speed on the PAL protocol.  I would not have tried all that repetitive motion, against water resistance, had I not been confident that I understood how my arm would respond. 

This whole LE business is totally frustrating, no kidding!  But for any stopping by this thread who are new, I hope we can keep the perspective that 'just do it' may work for some, but as maddening as slow, steady may be, it's a sound approach to minimize LE risks.  The studies tell us that there's really no limit to what we can do...it's all in how we get there, exercise wise. 

JP, I think you were doing a lot of weight training before surgery, right?  To me, that means you know what your arm feels like after training's muscle fatigue, and you would likely know when you pushed into LE danger zone.  For someone does not have the strength to pick up the pack of water and does not have a feel for how heavy is too heavy, 'just do it' can have some LE backlash. 

PinkHeart

Carol ~

I love to kayak, too -- so you are giving me hope!  Thanks for sharing.

I'm a still-water kayaker, but on some bodies of water when the wind picks up, it takes a lot out of me with upper body/arm strengh.  Funny, when I say I like to kayak, some people get the impression I'm riding river rapids       

Of course I have not been kayaking since being diagnosed and BC sugeries, LE, and axillary/lymphatic cording mess, etc.  I have a new incredible PT-CLT, who is all about sloooow.   My gorilla axilla cord is still a PITA.

I may kayak on Shem Creek (tandem with a tour guide doing most of the paddling!) when I go back to Charleston for my Stage 2 of SGAP surgery, and the lymph node transfer surgery.  Otherwise, I will wait until Spring  . . .

Rockym

PinkHeart, you'll have to let us know more about the lymph node transfer surgery.  It sounds interesting.  Are they doing that because they are going to be in there anyway?

carol57

PinkHeart, tandem paddling is a great way to go.  We do river paddling here, but it's sure not rapid!  But sometimes --and especially on the recent long trip--the fickle wind can blow at us, even though we're paddling with the current.  Hard work! 

One trick I learned is to experiment with paddling posture.  Sit up taller and lean in more with the torso, to make the abs do more work and relieve some of the arm work.  If the kayak has a rudder, use it extensively and paddle more on the non-LE side (obviously useless if you're bilateral!). Or alter the breadth of the stroke to change the point of most arm resistance.  Through the days of paddling, I found a variety of ways to alter which muscles did most of the work, so I could lower the repetitive effect. Some of my modified paddle strokes were not terribly efficient, so sometimes I was pokier than I wanted to be, but I could be there, doing what I loved, and that meant the world to me.

PinkHeart

Rocky~

We discussed the lymph node transfer during my surgery consultation.  I thought it would be during stage 1, but my microsurgeon prefers during stage 2.  Other microsurgeons seem to only do it with a DIEP.  I had SGAP.  The lymph node transfer surgery does not have to be done with breast reconstruction surgery.  From what I understand, my surgeon does NOT take donor lymph nodes from neck.  New Orleans docs do, don't know if others do.  Instead of Stage 2 surgery only being 2-4 hours, it will now be more like 4-6 because of LN transfer.  I'm sure that means more recovery time . . . and more oxycodone.

My insurance just approved the LN a few days ago.  I email with surgeon usually with SGAP related questions, but I think I may ask for a phone consult to talk more about the LN surgery.  My new PT-CLT communicates with his nurse, which is nice.  The surgeon/nurse will be sending a new order to PT-CLT to do whatever in preparation for the surgery on December 14.

To optimize healing, they suggest high protein diet, multivitamin, and after surgery he ordered 20 HBOT-hyperbaric oxygen therapy treatments.  I have more internal radiation damage issues.  Most patients in HBOT have nasty open wounds that won't heal, etc.

After Stage 1 surgery, I was told to not lift my arms more than 45 degrees for the first four weeks, then up to 90 degrees until 12 weeks.  So definitely slow going for me and my PT.  The way things are going, my kids will have to vacuum for me until they go to college. 

I'm sure my insurance company hates my bills this year -- and last year!

jpmomof3

Carol you are right, I don't want anyone to generalize my attitudes and plans to themselves. That is purely what I am going to do and feel for myself. I was an athlete before this breast cancer stuff and am fairly knowledgeable about how to train and exercise and increase weights and aerobic exercise safely. And As my husband always tells me, I am an unusually strong female for my size, and even with surgery and LE risks can probably handle a lot more than some without causing problems. I am curling and overhead lifting 15 pounds each arm and also having to pick up a 40 pound toddler and havent had any problems so I can handle a Costco pack of water. Despite my rant yesterday I am not going to do anything too risky or stupid, I am just frustrated with feeling weak and debilitated. I have never been weak or debilitated and don't want to be.



I mentioned you just because I was extremely impressed that you are able to kayak without problems. I gives me hope that I can do all I want to do (tennis etc)-with proper preparation and time. That is definitely the key. So don't take my rant to heart and hurt yourselves ladies. We can beat this with time and exercise.

carol57

jp, I didn't take it to heart myself, just a tiny bit concerned that women new to this forum might land here before reading more about what the risks can be, if we're not being smart about how we take those risks.  You and I are on the same page regarding developing and maintaining the strength that enables us to lift heavy items without signaling 'SOS' to the lymphatic system. My job makes it mandatory for me to be able to lift 20-30 pounds (such as hefting a bag into an overhead bin, aka a shoulder press!).  I wear the sleeve and hit the gym because I would be terrified of the physical activity of work and fun if I were not keeping my arm, shoulder and torso as strong as I can.

I don't know if I've ever mentioned it on these boards, but the trainer I work with in our little town's only gym has a world record in power lifting. He owns the gym and is amazing not only in his focus and discipline to be able to lift twice his body weight in a squat, but in his incredible kindness.  He fusses over the most minute form adjustments I should make, just the same as he does with the young athletes he's training for competition.  He 'got' the PAL guidelines and takes my needs really seriously.  It must look funny to an outsider to see the two of us working together in the muscle gym. Me with my little weights and a head full of gray hair.  I can tell you it was very entertaining to see him try the LE ball-bounce: seated on a stability ball, bouncing up and down while making fists in the air.  And--he pretty much gives away his time, to me and anyone else who needs his help.

So I'm incredibly lucky to have a great training resource, because JP, before my diagnosis I was not working out and I had and continue to have lots to learn.  GOOD for YOU that you are poking 'weak and debilitated' in the eye, and that you have the knowledge and skill to do it smartly!  I'm sendin' you tons of style points for kicking LE's butt!   (oops, that's the other thread!)  You will be on the court before you know it.

Carol

Rockym

PinkHeart, you will have to let us know what happens with the transfer.  I've read about it, but I don't recall if I read of anyone who actually did it and what happened.  My RO talked about the HBOT at one time.  At first he had me taking Trental and vitimin E, but told me if it didn't help after a few weeks to stop.  It didn't help.  In fact, nothing has helped the breast go back to its pre-radiation size.  RO said I could try HBOT, but it seemed like overkill at the time.

I can say that I am very happy that my cording went away.  Maybe 3rd times a charm and that will be the end of it.  I do have a sleeve on order since I will be flying next month.  I so do not want any more complications.  I now have a nice amount of hair and enough energy to get me though my days.  Being post menopause is now my biggest issue since it makes one feel a bit old.  Anyway, hope everyone is doing well and keeping their LE at bay!

PinkHeart

Rocky~ 

So glad to hear your cording has improved for you, and hope it never comes back to pay a rude visit.  My new local PT-CLT is still working on my cording and LE.  She is amazing.  Now that I'm 12 week out from Stage 1 SGAP surgery, the orders allow her to now move my arms in full range.  I'm now 7 weeks away from Stage 2 SGAP surgery & LN transfer, so we are working hard together to get me best range of motion possible.  I will have to continue again with my PT-CLT after surgery.

The PT-CLT (also amazing) that took care of me after my Stage 1 SGAP in Charleston with Dr. K, has asked him if she can attend/observe my Lymph Node transfer surgery.  He said it was OK with him if OK with me.  I said it was definitely OK for her to attend.  He does not allow residents to do any of his surgeries, he teams with his partner surgeon.  Residents are invited to scrub sometimes but only observe.

Rocky, sounds like you have a good Rad Onc.  At least they mentioned HBOT.  Mine saw the disaster going on before they radiated and after and never offered any advice.  I had very young rad oncs who spent 7-10 minutes at most talking with me.  Acted like cording and rock hard breast with full "one step" big implant no big deal at simulation appointment, etc.

PinkHeart

Hi,

I have a question regarding the Step Up, Speak Out lymphedema web site.   (SUSO)

I have had severe AWS-axillary web syndrome/cording since a few weeks out from my 7.5 hour BMX, ALND (19 nodes removed) surgery, and immediately followed by a 2.5 hour breast reconstruction with direct implants (that have since failed), for a total of a 10 hour unusually long surgery.  I started PT 3 weeks post op (needed to wait until 6 drains were out), then radiation started 8 weeks post op (had to wait until PT could get my arm to lift back far enough over head for beam to target breast.)  Everyone was clueless and never mentioned AWS -- except the PT-CLT.  Don't have to stand on my LE soapbox here, because you all know that many breast surgeons, plastic surgeons and radiation oncologists are clueless about or understand the seriousness and prevalence of LE --  let alone its bitchy friend AWS-Axillary Web Syndrome.

I haven't reviewed the SUSO site for about a year, and just went there again today.  I noticed in the Highlights column on the left that the following statement is now in bold letters:  "... have concluded that axillary web syndrome is a risk factor for lymphedema."  Further down, #3 states "Cording is associated with the risk or development of lymphedema."  (maybe it's always been there but I missed.)

Do you know of any additional studies or journal articles that are more recent that you could direct me to relating to this (personally experienced) fact about AWS and LE? 

Have any of your surgeons, rad oncs, etc. made these same statements about correlation between AWS and LE? 

Perhaps Dr. Corrine Becker or her surgeons that have trained with her? 

Also any new articles stating that whether cording is just scarring, or is lymphatic scarring?

I'm going to copy this and post on a few other threads.  Thanks everyone, I appreciate your feedback and experiences!

Here is link to SUSO, to the AWS page: 

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