There is a sound. It’s not quite a sonic boom but it’s fast and forceful. The camera cuts to birds flying out of the trees, fleeing from the danger that the sound must bring. The camera cuts to me, standing in shock. As the camera pans to a closeup of my face, you can see tears welling up in my eyes slowing, promising an overflow within moments. As dramatic music begins to swell in the background, I breathe in suddenly, as if I’d been holding my breath for hours. Suddenly, a single tear escapes my eye, my face relaxes and the audience realizes that this is a moment of relief. A release. That all is well again.
This has been one of my many fantasies that I’ve had about my cords, or axillary web syndrome, breaking or snapping. I have suffered from persistent and stubborn cording for almost three years now. And I do mean “suffered.” While I have had excellent range of motion, the cords have been extremely painful. Especially my armpit. Every time I lifted my arm, it was a tight, stretching pain. I could feel the pull go deep into my chest wall beneath my once upon a time breast and into my scar tissue, down my arm and into my hand and fingers. Does that make your skin crawl? Well, it’s not pleasant. But it was my normal. I actually got used to being in discomfort.
For those of you who don’t know what cording is, it can occur resulting from a sentinel node biopsy or axillary lymph node dissection during a mastectomy. One can develop rope or string like structures in your arm. This can inhibit range of motion and be quite painful. It is usually diagnosed by a physical therapist or lymphedema therapist (it is separate from lymphedema but can sometimes go hand it hand). It is posited that most cases for cording resolve within a few weeks to a few months with stretches and therapy. Read more about axillary web syndrome here.
But I stretched. I stretched every day. I went to therapy once or twice a week. We pulled the cord. We massaged the cord. We dug into the cord. We sang to the cord. We breathed deeply into the cord. And we definitely begged the cord. And each time, nothing. It would not move. It was intent on staying exactly where it was.
Then, last week, I was laying on my couch watching tv and I was stretching my arm and with my left hand, stretching the cord as my OT does at her office. I do this a lot in hopes that it will do something. It never does. But last week, out of nowhere I felt the most gentle pop. It wasn’t even a pop. It was an effervescence. And suddenly, in the area where I was experiencing the most pain, the pain was gone. There was some soreness where the cord had been but the rope like structure in my arm had suddenly disappeared.
Had I done it? Had I achieved the impossible? I went to be in disbelief, thinking I might have given it a good stretch. But when I woke up, it was still gone. I did it. “I got you, you fucker!!!!!!”
I had won the battle but not the war. There were still more cords. I still stretched every day. One day I felt a pop in my wrist by my thumb. I could always feel several cords there. The pop felt like when I crack my knuckles (which I sometimes do with my wrist but near my pinky, never my thumb). When I went to feel the cord, it was gone. GONE!!!!!!
Then the other day, I was stretching again, and there was a thin cord. Thin but mighty. It caused a sharp pain every time I touched it. But I was used to that pain. I pulled it. I tugged it, I dug under it and pulled it up. Nothing.
But when I woke up in the morning, it was gone. GONE!!!!! Another one bites the dust!
I always imagined that when these cords went away, that there would be tears of relief. But, the snap was so subtle and undramatic, that I didn’t know what to make of it. With the last cord, I just continued putting cream cheese on my son’s bagel as if it were a normal morning.
I know that there are still more cords that I need to snap. I can feel them and they are deep in my arm. Really deep. But I don’t feel hopeless anymore. I know that I will get them one day. My cords might be stubborn but so am I.
Did you have cording?
How long did it take for your cords to snap, if they did at all?
Do you have any magic tricks to make them disappear?
A photo taken of one of my cords. Please excuse my hairy armpits, lol! It was winter and I couldn’t be bothered.
Oftentimes, when facing cancer treatment, you do not have too many choices. You can choose to have a mastectomy or not. Go through chemotherapy or not. Get radiation or not. These don’t really seem like choices. At least, for me, they were not presented as such. When speaking to a nurse about whether or not I would need radiation, he said, “Oh yeah, you’re getting radiation.” And it was decided. But recently, as I move into the final phase of my treatment, it seems like I have had to make a lot of decisions that can affect the rest of my life.
When I met with my plastic surgeon, Dr. Saadeh, after being diagnosed in August of 2014, he presented me with all of my reconstruction options. When I say “all,” I mean two. 1) I could get an implant. The pro of getting implants is that it is a simple, outpatient surgery with a short recovery time. I’d be able to get back to normal life, including raising Oliver, in a few short weeks. The cons of implants are that they need to be replaced about every 10 years or so, assuming that they don’t burst or deflate (REALLY?) before that. That means several surgeries over my lifetime. I could develop scar tissue around the implant which would make the breast hard. Also, if I were to gain or lose weight, only one breast would show change while my reconstructed breast would remain the same. 2) Either DIEP or TRAM Flap surgery (I write both because I honestly can’t remember which one has been offered to me although I’m pretty sure it is the DIEP Flap). A TRAM Flap reconstruction involves removing fat, tissue, vessels and muscle from the lower belly area and moving it up to reconstruct the breast. The DIEP Flap surgery is similar to the TRAM Flap except it is muscle sparing, meaning they take the tissue, fat and vessels but don’t use any muscle. This can be done by a surgeon who specializes in micro-surgery. The pros of this surgery is that the reconstructed breast is very similar in feel and look to the remaining breast. If I gain or lose weight, it will show in both breasts since it is my own tissue. While this is a more invasive surgery initially, I will have less surgeries for maintenance over time. The cons of this surgery is that recovery is significantly longer than with getting implants (about 6 weeks total with 3-5 days in the hospital). I will lose core strength. I will not be able to lift Oliver for several months. 3) No reconstruction at all. This was not an option given to me but it is an option and one I have strongly considered.
Reconstructed breast after DIEP Tram reconstruction. Photo from breastcancer.org
Reconstructed breasts with implants. Photo from breastcancer.org
My plastic surgeon suggested that, given my lifestyle and the fact that I have a young child, the best option for me would be to get implants. This was a strong recommendation. He said he would do a Tram surgery for me but he didn’t think it was the right time in my life to have that kind of invasive procedure. At the time, I didn’t care. I just wanted the cancer out of my body. I didn’t care if I had a breast anymore. I didn’t care if they took them both. I just wanted to live. I wanted to escape my life.
I remember being disappointed with both of my reconstruction options. I thought I’d look through a book of celebrity breasts and, literally, choose the ones I liked. “I’ll have one Salma Hayek, please!!!” But that’s not how this works. I could change my breast size (I don’t want to, mine are just fine, thanks!) but my breasts will never look “normal” again. Surgery will not be a positive thing. It’s like choosing a Congressman; you choose the lesser of two evils and hope for the best.
Fast forward a year later. I have had my mastectomy, six months of chemotherapy, a year of Herceptin, and 15 sessions of radiation. My breast is rock solid hard due to scar tissue and damage from the radiation. I’m in constant discomfort. I have also developed Axillary Web Syndrome in my arm down to my fingers and lymphedema. I went to my appointment with Dr. Saadeh, convinced that I was going to get an implant. All we had to do was iron out the details. When and where. But that is not what happened.
“So, what’s going on with that arm,” he asked?
“Ummm…I thought I was here to talk about my boobs,” I replied.
But that’s not what he was interested in. It turns out, NYU is now starting to do lymph node transplants and he seemed very interested in steering me in that direction. I had heard about lymph node transplants but was under the assumption that they were still in trials. They are not in trials but the science is very new and doctors are just starting to do the surgery. He was also now strongly suggesting that I do the DIEP Flap surgery over getting an implant.
“Why would I want to do that,” I asked? “I have an abnormally huge child who likes to be picked up all the time. Wouldn’t that be a problem?”
“Well,” he said, as he checked himself out in the mirror (something he did several times during our appointment), “it’s true that there would be a longer recovery and you could not lift your son for several weeks but I think this would be a good solution for you. Studies are showing that when you reconstruct with your own tissue, it can increase blood flow to the affected arm, improving circulation and helping to improve symptom of lymphedema. And I really think you should consider the lymph node transfer surgery. I think you would be a good candidate.”
So now, in a matter of minutes, the surgery I thought I was going to get, the implant, is no longer being recommended for me. I could do it but my surgeon thinks I will still be extremely uncomfortable physically. I now have to wrap my head around the possibility of a completely different surgery; one that will be more violent, more invasive and take up more of my life. And not only that, I was being presented with a whole other surgery that could help with my lymphedema but, it is completely new and just starting to be done at NYU for the first time. I would be one of the first ones at NYU to get the surgery!
“I need to read articles. What articles can I read about this? And I need to get second or third opinions. What doctors can I see?”
I think this shocked him a little bit but he answered my questions. He told me about Dr. Babak Mehrara, who works at Memorial Sloan Kettering and is a pioneer in the field of breast reconstruction and lymphatics. He told me to go see him (they are close friends) and to read his articles. As soon as I got home I looked him up, read this article about lymphatic regeneration after tissue transfer, and called his office to schedule an appointment.
A few short weeks later, I was in Dr. Mehara’s office. He spoke really fast and had a lot of confusing things to say. But here is what I understood. A lymph node transfer is not a cure. I’ll say that again, it is not a cure. When it is done, at it’s best, it prevents the lymphedema from getting worse. This was a huge disappointment to me. I thought going in, that this was recommended to me because it would fix me. I learned that this was not the case. I also asked him about the DIEP Flap surgery helping my lymphedema. He said it has helped with some people but not a huge percentage. And, again, it would not be a cure.
This is the first time that I had to face facts and acknowledge that my lymphedema is forever. It’s never, ever going away and I will have to manage it for the rest of my life. This information suddenly weighed on my chest. I couldn’t breathe. The disappointment was more than I could bear. Despite this, he suggested that I get a test called a lymphoscintigraphy which would provide pictures of my lymphatic system.
In the last year, I have been through some incredibly unpleasant medical procedures. But this one really bothered me. On the suck scale, from sucking boogers to sucking sweaty horse balls, well, you can guess where on the scale I might be referring to. The procedure entailed 16 injections. Eight in the webs of my fingers and eight in the webs of my toes.
Fun Carrie fact…I hate my feet being touched. It freaks me out! I hate getting pedicures for this reason but suck it up once or twice a year. So to have eight needles injected in between my toes as two nurses hold and spread them was just about one of the worst things I could think of.
After they injected my hands, I had the pleasure of having a machine, which I will name, “Sloth” scan me as my arms were place over my head. I think I had to stay in this position for 45 minutes. Cue major cramping and muscle spasms. But I could not move or we’d have to start again.
The same thing with my legs. The machine slowly scanned me for about 45 minutes. Could I listen to a podcast? Surf the internet? No! Just me and my thoughts about needles being stuck in my fucking toes!!!
After about three hours of tests, the nurse came back. “We need more.” MORE????!!!!???? Back in the machine I go for another hour as it proceeds to scan my WHOLE BODY! Oh, Sloth, how I hate you!
After four hours of needles and scanning, I was free to go.
“When will I know the results,” I asked?
“Well, I can see the results. But I can’t tell you,” said the nurse. “Your doctor will call you on Monday.”
Bitch.
One week later (seriously) after many phone calls, I got a call from Dr. Mehrara’s nurse confirming that I did in fact have lymphedema in my arm. They now wanted to schedule me for another test called an ICG Lymphography. More needles. This would give them a more detailed image of my lymphatic system and could tell whether or not I would be a good candidate.
But I knew I wasn’t a good candidate. You see, I’ve always had swelling in my right foot and the lymphscintigraphy confirmed that I have a slow uptake of fluid in my right leg which puts me at risk for lymphedema.
I consulted more doctors. I talked to every doctor and nurse that I encountered. They all agreed with my concerns that this procedure was too new and that it could be too risky for me. Why transfer a set of lymph nodes from one part of my body to my arm when 1) it won’t cure my lymphedema and 2) could possibly cause lymphedema in another extremity. This was the end of the line.
I met with Dr. Mehrara this Wednesday. I was supposed to have the ICG test but told him I didn’t want it. He agreed that this wasn’t the right procedure for me right now. One decision down.
Now, for my reconstruction, it has been a rough choice. I have been thinking about it every day since my meeting with my plastic surgeon in September and I think I’ve made the choice I need to make but it’s not the one I want. I will be getting the DIEP Flap surgery.
I remember thinking when I was diagnosed with cancer over a year ago, that I couldn’t wait until I got my reconstruction. In my mind, it was the event that would end my cancer journey (for lack of a better word). It would close the chapter on this part of my life and I’d be able to move on. But cancer doesn’t work like that. It throws difficult decision after difficult decision at you. It is constantly testing you. “Are you still strong,” cancer asks? “How much more can you take?” I guess we will find out.
Ken, Oliver and I will be taking a staycation for the rest of the summer. While I can’t quit social media cold turkey, I will be taking a break from blogging until we get back…unless something incredibly dramatic happens, of course. Enjoy the last days of summer! I know we will.
Here are some older posts to look back on in the meantime.
As I’ve mentioned in the past, I have been dealing with axillary web syndrome (cording) and swelling, which is possibly lymphedema as a result of my breast cancer surgery and subsequent treatments (radiation, I’m looking at you here!). I have been in physical therapy for several months now to try to help. Unfortunately, there has been absolutely no relief with these side effects. They have persisted and even gotten worse.
The swelling has not gone down and, in one part of my arm has even gotten worse. The cords that I’ve had since the beginning are still there and won’t snap or dissolve. Bandaging doesn’t help, it makes it worse and has even spurred new cords to form. So does stretching, both by myself and manual (done by the therapist). New ones have formed as recently as last week, in my thumb, down my wrist and into my arm. This has been a source of extreme frustration for me and my physical therapist. We are literally at a loss for why this is happening. I am in some pain (I can still get on with my day) but the fact that this is getting worse again is scaring me. I don’t know why this is happening and no one can help!!!! Why does this happen? Why won’t it go away?
Last week, my physical therapist, who I love and has been working hard to try to figure out how to make these “moody” (her words) cords go away, told me that she feels like she has done all that she can do and that we should bring our meetings to a close. In light of the fact that things are getting worse, I was thrown for a loop. She was leaving me to fend for myself. I burst into tears. I couldn’t believe that we would be ending things when nothing had been resolved. She was giving up on me. She was giving up, period.
She said that she didn’t want to stop but she felt that she has done all that she knows how to do. I expressed my frustration at her decision. How can we stop now? What do I do next? I can’t do this alone!
At this point I was sobbing. I was scared. Scared for my future. Scared for the unknown of what life will look like without support for this problem. I’m not sure but I think she was tearing up too. It was not a great moment.
I think one of the things that struck me so deeply was that this is the first time in a full year of treatment that I’ve heard, “we’ve done everything we can do.” That is a frightening statement to hear when you are dealing with cancer or any serious illness. It’s scary when the experts decide to give up the fight when I still have fight left in me. Then it becomes a game of persuasion, pleading for just a little more time. A little more effort.
Hope is one of the only things we have when fighting cancer. Without it, it’s hard to get through each day, each treatment, each setback. And these can come in droves. I may be pretty freakin’ knocked down lately but I haven’t given up the fight, not by a long shot. I believe that there is a solution to this problem and we just haven’t figured it out yet.
Yesterday I met with my physical therapist again and she said that she emailed my doctor for guidance on what to do next. So as of right now, physical therapy isn’t ending for sure. But it might be. Either way, I decided to go to another hospital for a second opinion. I’m not sure that they’ll find anything new or try anything different. There’s just not a lot of information out there about cording. But I have to try. I have to! I have to be my own advocate. I have to keep pushing to make sure I have as happy and pain free a life as possible. Because I plan on living for a very, very long time. I don’t plan on ever, ever giving up.
My insurance covers one more compression sleeve so I think I’m going to get one. I have a plain, beige one right now. It’s fine but it’s boring. But there’s an incredible company that has found a way to turn a bad thing into something humorous and fun. Lymphedivas makes compression sleeves with a design so that some of the attention you might get from your sleeve is positive. It is also a great way to start a conversation about lymphedema and why it occurs. Their mission is, “LympheDIVAs™ LLC is dedicated to creating medically correct and fashionable compression apparel for the savvy and stylish breast cancer survivor with lymphedema which will inspire her to feel beautiful, strong, and confident.” I’m down with that.
So which one should I get. I’m really torn. Please vote. I can’t promise that I’ll go with the winner but you will strongly influence my decision. Also, keep in mind, I can’t get the gauntlet (the thing that goes over the wrist and hand), I’ll need to buy another plain glove, either beige or black. That’s something to keep in mind when voting.
Thank you, Lymphediva’s for creating such an amazing product!!!!
I thought when it was over, it would be over. That life would go back to normal and slowly I would forget about the nightmare I have lived for the last eleven months. I didn’t realize that is not the way it goes. No one told me that when you book a trip to Cancerland, you stay for a very long time. No one told me that it keeps going.
I remember early on in treatment I learned about the term “late effects.” I was mortified and frightened by the thought. “There are lasting effects of chemo? That can last for months, years, a lifetime?” Ken and I asked about this at one of our appointments. I don’t remember exactly what we were told but there was a “we’ll take it as it comes” approach. And with that, we didn’t get much more information than what was on the internet.
In many ways I am lucky. At only three months post chemo and two months post radiation, I’m feeling pretty good. I have a lot of energy, my chemo brain is mostly gone (I still forget things here and there like names or details of things I need to do), I don’t have any heart problems or nerve damage. I’m lucky. I’m so, so lucky.
But I am still having problems with my arm. The cording is persistent and will not go away. New ones have formed in my hand and fingers. The swelling is getting worse, too. My physical therapist still has not diagnosed me with lymphedema but it hasn’t been ruled out either. Cording (or Axillary Web Syndrome) can cause swelling and she said my cords are stubborn and moody. They could be causing the swelling. But after weeks without answers I’m getting nervous and anxious. What if it is lymphedema? What will my life be like?
I already have been given a compression sleeve and glove. I hate it. It’s ugly and uncomfortable. Will I have to wear it the rest of my life? What about lymphatic massage? It’s time consuming. Will I have to find time every day to do it?
Why did no one tell me about this? I only found out about lymphedema through my own research. It was never mentioned to me. And when I asked about it, it wasn’t a major concern. But I was concerned. I was given a pamphlet to read. That’s it. And now here we are.
I have been caught off guard by the fact that, almost a year later, I am still having health problems. I was not prepared for the fact that when I had cancer, I felt great and now that the cancer is gone I have medical issues, possibly life long ones. I’ve been taking it really hard. I cry every day. I’m irritable and I take it out on the people closest to me. Most of all, I’m scared. If this is happening to me now, what’s next? What’s in store for me? Will I be able to keep standing up to the challenges that I will have to face? I’m being broken down. Beaten down.
I don’t want to do this anymore. I want to leave Cancerland.
This morning I finally got an appointment with a physical therapist to find out what that pull in my arm is and what is causing the swelling. I’ve been losing sleep, literally, because I was sure it was lymphedema. Lymphedema is the swelling of the arms or legs. It can occur after a mastectomy along with axillary lymph node dissection or a after a sentinal node biopsy. Because I had cancer in two of my 12 lymph nodes, they were removed at the time of my mastectomy. Getting lymphedema is a fear of mine because once you have it, you have it forever. There is no cure, just maintenance. I’m convinced that I already have a mild form of lymphedema in my right foot (it has always swelled up and doctors can’t explain why) so to have to deal with it in another extremity seemed just too overwhelming.
Part of the purpose of seeing this particular therapist was to get evaluated for lymphedema but when I asked the therapist what she thought she said, “Well, I can’t diagnose you. A doctor needs to do that.” Excuse me? I found that really frustrating because I didn’t really get an answer but, here is what I learned.
I have been diagnosed with axillary web syndrome which is also known as cording. Cording can occur in women who have had a mastectomy. When you develop cording you can literally feel a cord underneath your skin. Mine feels like a guitar string. It is not a muscle. According to the therapist, no one knows exactly what it is, why it happens or what to do about it. It does have something to do with the lymphatic system (although I wrote to my surgeon who says it has to do with the tendons but I’ve read several articles that say differently). Cords are painful and tight, like a pulled muscle and it restricts your range of motion. For example, I have a hard time straightening my elbow or reaching too far right now.
Here cording is shown in the upper arm area.
There isn’t a lot of research on axillary web syndrome but I found this case study and this one when doing my research. The first one was published in 2009 and the second in 2007 so, I don’t know what information is still current. This is what was said about axillary web syndrome in the second article, Treatment of Axillary Web Syndrome: A Case Report Using Manual Techniques. “The surgeon postulated that when lymph nodes are removed, the adjacent lymph vessels, which are now non-functional, become fibrosed. They can attach to the axilla or chest via scar tissue. These hardened lymph vessels become apparent when the patient lifts her arm and stretches the tissue. Inflexibility in the lymph vessel can lead to significant pain and avoidance of movement. Adaptive postures can then lead to a loss of arm range of motion.”
Treatment, for now will include weekly appointments with the physical therapist. I have two stretches to do, twice a day. I will be learning lymphatic massage to help reduce swelling.
As for the question of lymphedema, the therapist says there is cause for concern when one arm is 2 centimeters or more larger than the opposite arm. There is definite swelling in my right arm, which I knew about. In one area it is exactly 2 centimeters bigger than my other arm. However, we don’t know what size my arm was before I developed this problem so it’s very possible that there is a difference in size between my two arms to begin with. Also, cording can cause swelling in the affected area.
I left the office today with some answers, which is really good and can be dealt with but I haven’t been given full reassurance that I do not have lymphedema. I am also confused and frustrated by the fact that measuring the arm is not part of standard care before and after a mastectomy. If developing side effects such as cording or lymphedema is possible, shouldn’t we have a baseline in order to properly diagnose?
Has anyone else dealt with axillary web syndrome? What was your experience? How can we let our surgeons know that preemptive screening can be helpful for future diagnosis?
Check out this article for more information on cording. I found the information very useful. This video was useful as well.
My Little Bs Have the Big C 