Is it now possible to refuse removal of nodes?
Comments
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I never said all cords are permanent. I said my LE MD said my cords are permanent. I followed up in a later post stating that Day and I "must have slightly different issues" I never said cords or all cords are permanent.
We all post our personal experiences here. It is always best no matter what we read to check with a medical professional. I find the advice here should be used to form questions to ask our MD… not diagnose or change treatment.
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I am not going to engage further in this, but
1) TonLee--Mondor's disease involves the breast, and it's considered to be primarily veins, but it's much less common than axillary web syndrome.
And, I was writing for BInney--not Bennie, and I was offended by your response to her. Binney is a revered member of this forum, and is tireless in her advocacy for patients with lymphedema.
I believe I am "minding my own business" when I tell you that as someone who has put a lot of effort into posting accurate information on this forum, creating a website to further advocacy of lymphedema and attempting to counter misinformation about the condition, I expressed that Binney explained the diagnostic criteria of lymphedema to you, and I found your response dismissive at best.
Day--I didn't accuse you of lying, I just cautioned that popping cords can lead to damage.
This forum doesn't tend to get into these kind of cyber-sniping, because we've always focused on supporting each other, respect and the medical truth--to the extent it's known.
Any further back and forth is just going to dig a deeper, and non productive hole.
Kira
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Kira, Mondor's disease and lymphedema are two completely different things, right? I had Mondor's after my mastectomy/reconstruction; lucky me got it on both sides (one side after my mastectomy; the other side after my implant was placed) and it was very painful for a few months. However just as is should, it cleared up on it's own after about 3 months (I've read that it can take up to 6 months). I've had no problems since.
TonLee, when I read your description of your condition and what your doctor said, my first thought was "Mondor's". I was going to post here and mention that but as the discussion went on with you and everyone else talking about it being lymphedema, I figured I was wrong. Here's a picture of Mondor's:
Is this what your cording looks like? And here's some info about Mondor's:
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Kira, the way you formulated your post, was clearly an accusation of me posting misinformation. All I have posted was what my BS's recommendations for me were, and how it solved my issue.I never stated that someone should do what I was recommended to do. I only related my experience.
Due to the care my BS had for my case, and his experience in the BC field, in my specific case, allow me to trust my BS more than any links and/or advice another BC patient on a forum can give me. And even any advice a medical expert in this might give me, as long as they have never physically consulted me and they aren't the ones who had performed my ALND and know exactly what they have cut and where.
As for now, knock on wood, my cording never returned, and it was "fixed" in about 10 days. I had the mild truncal lymphedema BEFORE the cords appeared, and it never got worse.It only shows if I do a lot of repetitive movements with my right arm, and it looks like a have a slightly "fatter" underarm on my right side.
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Yeah Beesie! That's it! Thanks for posting the picture!!
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Kira,
You came to pick a fight.
Imparting information was secondary.
As of right now you have 2,122 posts on this site. Enough posts to know:
1. In this medium it is better to ask for clarification before assuming someone's tone.
2. Beginning a response with a reprimand makes all the information that comes after simply, blah blah blah:
"TonLee--you're relatively new to the thread, and perhaps are unaware of Binney's expertise, and I found your response to her disrespectful."
Like I said before, if Binney has a problem with my perceived tone, she is more than welcome to address me personally.
You can justify your busy-body behavior any way that makes you feel better.
As far as I'm concerned, you're more interested in schooling the new girls about what you perceive to be appropriate manners, than about the actual information or women on it.
Feel free to ignore me and my posts in the future.
I plan on doing the same to you.
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TonLee, if the picture I posted is the same as what you have, then it appears that you have Mondor's and not LE. I don't think that Mondor's is nearly as rare as they claim!
Or do you have LE in addition to Mondor's? In any case, I know from my experience with Mondor's that it was quite different than anything I've heard about lymphedema, and Mondor's has the advantage that it's a temporary condition - it will go away on it's own, even if you do nothing. I would imagine therefore that the treatments used to ease Mondor's might be different from what's appropriate for those who have lymphedema. I don't know that for certain but in reading the discussion up to this point it appears that treatments / treatment results for LE and Mondor's are being mixed together. That might be dangerous, particularly if those who have lymphedema try something that's okay for those who have Mondor's but that inflames the condition of those who have LE.
Anyone know more about this, and whether the same or different treatments are used for Mondor's cording (which really doesn't need to be treated since it will go away on it's own) and LE cording?
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Beesie,
My PS says it is Mondor's. It is on my augmented non-MX side, as well as on the TE side. (Though the TE side is not as obvious, just tight.) He told me it will resolve, but may take awhile since I'm on chemo.
It hurts, but if I work out if feels better.
I am ignorant about LE. The only research I've done is on how to keep from getting it. So I couldn't say one way or another.
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Mondors is indeed very different from Lymphedema (LE). Mondors is a superficial thrombophlebitis of the subcutaneous veins of the chest wall area. It is possible to have both, it may even be true that persons with one may be predisposed to also have the other, but I know of no studies that indicate that. Mondors may be more similar to Axillary Web Syndrome (AWS) in its presentation which is also associated with LE but does not require LE to be present. I have had all 3 at several points during my 10 year cancer history and LE is the only one that has persisted for me.
I developed Mondors of my chest wall following my right lumpectomy in 2000. It did not show up until almost 3 months following my surgery but then persisted for about 3 months. It was a painful, tight, visible rope stretching from just below my breast to my waist. Gentle stretching, application of heat a few times a day and the use of NSAIDs to decrease pain and inflammation helped.
After my bilateral mastectomy in 2005 I again developed Mondors of the chest wall, this time down my left ribcage. I also developed AWS/Cording and superficial phlebitis of my left arm along with LE of the left side. I have often heard the term "Cording" to refer to both Mondors and AWS but is probably more a descriptive term of their similar presentation than an actual disease process.
Beesie I agree with you that while text books seem to state Mondors is a rare condition I believe it is much more common following surgical procedures than it is given credit for. Fortunately, it does seem to resolve eventually in most cases.
Regarding the original poster's questions about refusing removal of axillary nodes, a patient may of course refuse any treatment, but I agree with other posters that the article mentioned does not apply to all BC patients. I have had the (mis)fortune of experiencing that issue from both sides. The first time when I refused further node removal after my original Stage 2 IDC dx in 2000 of the right breast which showed micro mets to 2 of the 6 nodes removed in my SNB. I knew the micro mets would push me into having chemo + radiation so felt there was no justification in taking further nodes. I completed treatments successfully for that cancer and never experienced a recurrence or LE to date in that right arm.
The second time in 2005 when my Stage 3 ILC dx in the left breast revealed a large ILC tumor plus massive nodal involvement. My SNB turned into a total ALND of all 3 levels of nodes, 23/23 being grossly positive. Given my pathology and cancer presentation I was in full support of removing the multiple tumor sites which is what my axillary nodes had become. I can't quote trial data but feel strongly that reducing the local tumor load when possible does have an impact on distant recurrence rates.
So as is usually the case in a BC diagnosis, there may not be a clear cut answer or direction that can be universally applied to all. We must look at our cases individually, make ourselves aware of the current clinical data, solicit expert medical professional input, and then go with what seems to be the best choice for our specific circumstances.
Yes I ended up with LE less than 2 months following surgery and before I even started radiation. Was a total ALND absolutely necessary in my case? I will never know the answer to that question. Would I have developed LE any way after getting 3 field radiation of the chest wall, whole axilla and supraclavicular nodes? Certainly would have been at risk for LE even if I had stopped with the SNB only and had no further node removal. Would I still be here NED more than 5 years out from a Stage 3C dx if I had not had my cancerous nodes removed? I can't say obviously. We know chemo is less effective on ILC than other cancer types. If I had not had my nodes removed first would my cancer had progressed between the time of SNB and 6 months later when I was started on hormonals after completing chemo ?
The questions can be endless and there are NO absolute answers. While my personal story may be interesting to read (or not) it is still just that...MY personal story and one that may or may not have relevance to any one else's decision process.
Do I wish I did not have LE? Of course. Do I believe having LE is worse than having cancer? NO I do not. LE is a challenge and a lifelong thorn in my side.....but for me the priority was to have a LIFE. I actually have a very GOOD life in spite of the LE and other cancer SE's. Quality of life matters and should be pursued when possible.....but it is a moot point once life is gone.
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I had SNB in 2007 with lumpectomy surgery. I had 7 weeks of rad after that. No LE. Then in 2010 I broke my left wrist which was my surgery side. I developed LE inside my cast. And went immediately to orthopedic surgeon who hooked me up with ab LE therapist who massaged my arm above the cast 3 days per week. Then I went to a wrist cast which stopped below the elbow. You could feel the lymph nodes at the elbow as hard as marbles. I continued therapy all through th cast being on and then once it was off for a few more weeks. I was also having mobility therapy for the wrist. Luckily all the therapy worked and I got 98% of my wrist mobility back as well as my LE back under control. I currently have no limitation to what I can do with the exception of no needles and BP. I really encourage therapy for anyone who has this issue. I know it's a pain to disrupt your day for therapy but I found that it was extremely beneficial and just something that I was doing for me.
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LindaLou - Where is my "Like" button when I need it??? Actually, like is not strong enough - Love your post.
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LindaLou, thank you so much for the explanation of the difference between Mondor's and LE!
As you explained, "cording" is a term used to describe the presentation of both conditions, but the conditions themselves are very different. I wonder if a thread should be started about Mondor's - maybe pinned somewhere - so that women who have Mondor's can be directed there. If someone with Mondor's thinks that they because she has "cording", she has LE, that could lead to a lot of incorrect assumptions and worries. And if she discusses her treatment and progress and what she heard from her doctors about her condition to others here who do have LE, that could be very confusing for all concerned. It also would be interesting if a thread was started about Mondor's because we might find out that quite a few women here have been affected.
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Beesie, do you get Mondor's from surgery, node removal or both? How exactly and why do you get this? I now have another thing to obsess about. My surgeon will surely fire me.
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You get Mondor's from surgery. I got it on my right side after my mastectomy and expander placement. Then I got it on my left side (natural breast, no SNB) when I had my exchange surgery and had an implant added into my good breast for extra symmetry (but I didn't get it again on my right side when I had that surgery).
While I think Mondor's may be more common that it's claimed to be, it's not that common. Don't worry about it. I don't think there is anything that will indicate if you might get it and I don't think there is anything that will help you avoid it. It probably won't happen to you but if it does, it does. It restricted my movement for a while because it hurt to reach with my arms - and that was a pain in the butt because I'd moved past my surgical "no major reaching/lifting/carrying/stretching/ etc." 6 week restriction but there I was, having pain if I reached or stretched. But it really does go away all on it's own. Compared to everything else, it's really no biggie.
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I logged onto this thread because last night I again felt the surge of regret for my sentinal nodes removed. Since my cancer was low grade, slow growing, I knew that it was highly unlikely that cancer would be found in the lympth nodes. But...the day of surgery, once admitted to the hospital, the nurse asked me to sign a consent form. On it was lumpectomy and lympth node removal. The nurse said, she could not proceed further until I signed the paper. She said to write my concern on the paper, which I did and chat with the surgeon before surgery. The surgeon came in twenty minutes before surgery and said the concent form was signed and the nodes were being removed. I tried to argue, but saw she was determined to remove them. I consented. You don't fight with someone who is about to cut on you. I was sad.
Now...I have a golf size lump under my arm, and a swollen breast most likely due to sentinal node fluid. I have a hard area in the breast...fluid? Last night (Tuesday night will be 2 wks since surgery) I have cording running down the inside of my left arm. It hurts. My surgeon is on vacation. The thought of possibly getting LE due to a unnecessary procedure irks me. In looking at the pathology report...it seems as if I had 4 nodes removed...and at least a four inch surgical cut/stitches. Now...I have no sentinal nodes under my right arm and none in the left arm. Sentinal nodes gone!
I had cording the first time around. I was sent to a therapist which helped relieved the pain. She gave me exercises that helped. The cording then was down the whole front of my chest...quite large. The sentineal fluid for the first lumpectomy did not lock up under the art pit as it is doing now.
The stressful part of this isn't that it will go away, rather possible LE. I've heard that even removing sentinal nodes can cause LE. Thats why I checked in here.
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Eve, I'm so sorry for all your distress.
It's so hard to face the bc, but then to be bullied into consenting to something you didn't want to is just outrageous. You must be so frustrated!So soon after surgery there's certainly no "guarantee" that you'll be dealing with lymphedema, and I hope you never will.
But a referral from any doctor on your team to a well-qualified lymphedema therapist would be a good next step, for peace of mind, baseline arm measurements, help with the cording, and tips for reducing your risk of lymphedema going forward. Here's information about finding a well-trained one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmRest up, stay really well hydrated, elevate your arm as much as possible, and do some deep abdominal breathing. Be well!
Binney -
Evebarry,
The hard knot in your armpit sounds like a seroma, and recently seromas have been linked to the risk of LE, and they definitely can create cording.
I'd suggest checking in with your breast surgeon and having the knot checked out and consider aspiration.
We wrote a page for healthcare providers and the risk of LE with seroma is on that page;
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
Also, did anyone throw in the link to axillary web/cording?
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
It sounds like you felt as though your views weren't listened to, and that is a horrible feeling, and can leave lasting anger.
Kira
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I haven't read the entire thread but wanted to say Kira, thanks for the information regarding not moving too much after surgery! I had not read this before and nobody had ever said anything to me about it. I know when I had my SNB and then later my lumpectomy - I was told to start moving my arms, etc. after 3 days so that my range of motion would not be limited - my shoulder would not freeze up, etc.
Well I didn't listen to the doctor and that is mainly because I am such a wuss when it comes to pain - there was no freaking way I was going to move that arm for the first 10 days and I didn't!
Then about 1 year later I broke my humerous bone on my left side (cancer side). I had massive swelling and bruising. I thought for sure I would get LE but again - I was in so much pain I refused to move that arm and it took me at least 45 days before I would consent to PT.
I am so glad that I didn't listen to the first surgeon or the orthopedic surgeon and I will never forget what you wrote and I appreciate it so much that you provided that information.
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Jancie I was told to move my arms after surgery but not overdue it. I was not supposed to lift my arms above my shoulders till the drains were out. (not that I could anyway). But my BS warned me not to keep my elbows to my sides at all times or I would get "Frozen" so to speak. My PS gave me exercises for stretching after the drains were out. Slowly adding more challenging ones.
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Jancie, I got no post op instructions, and had gotten a list of shoulder PT exercises and overdid it, and got an axillary seroma and webbing, and right at the peak of it, got bug bites, and LE.
So, when I heard Jodi Winicour--a wonderful PT from Klose training school--give her lecture on axillary web and the need to let lymphatics heal, I wished I'd known it at the time.
Did you break your humerous after your lumpectomy/SNB?
One thing I learned when I broke my LE hand is that the periosteum, the lining of the bone is full of lymphatics. I had a ton of swelling and bruising, and couldn't move my hand because of the cast.
And, I've found that a lot of PT's don't "get" LE and will prescribe repetetive movements that just aren't good for us--my hand OT is trained for LE, and she still didn't get why I couldn't do 40 reps of the 1 lb weights!
Good for you to listen to your body.
Kira
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Kira - yes, I broke my humerus bone in 3 places after my surgeries - about 1 year later. All of the breaks were at the top of the bone where it goes into your shoulder. I had quit my job working at the horse barn when I was diagnosed and never went back because of my concern with LE and repetitive movements, the one job that I absolutely loved and felt that I needed to quit. So when I broke my arm I was freaking out thinking "oh great, quit the one job I loved and will end up with LE"
I stressed over LE for 6 months because it took that long for the swelling to go down. I refused to get a mammo on that side in February due to swelling and concern about LE and did a breast ultrasound instead. I have been ordered by my oncologist to now go back and get a mammo now that the swelling is gone.
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Kira..... women, who just have their sentinal nodes out, are they at risk for LE? What's the odds? I feel for everyone who suffers with LE. That is one of the biggest reasons, I did not want any nodes out. I have this huge knot under my arm pit. It is hard to lift my left arm because of the cording running from the arm pit to the elbow. I also have a hard lump in the breast. I'm trying to lay low...it's hard when there is so much to do. I have had frozen shoulders in the past...don't want another frozen shoulder, but like I said, I can't raise my left arm.
I had hoped by now the cancer experience would behind me...but with this going on, I'm having a hard time moving on. I should call the surgeons nurse to have the sentinal fluid asperated.
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evebarry women who have sentinal nodes are at risk for LE but a lower risk… the more nodes the higher the risk. Also, even women who have had an MX are at risk for LE. (My BS stated that I even with a MX you are at risk).
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Evebarry---I just had a sentinel node, so did Binney and a few other women here.
Please, please call your surgeon and get the seroma aspirated--seromas and axillary web/cords increase the risk for LE. It's what set me up.
You can't raise the arm, because it's tethered by the webs.
Did we give you the link for axillary web syndrome?
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
It's pretty hard to put the cancer experience behind you when you're having symptoms from the treatment.
Let us/me know how you're doing, okay?
Kira
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I also had a seroma after SNB. I guess that's what did it to me?? I never heard this, but it makes sense. The surgeon said she'd never seen it happen before! She aspirated it, but it came back. Took a long time to resolve. Dang. If I had known, I woiuld have gone for aspiration every other day!!!
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Kira..One node and you got LE. Horrible. How are you now?
I read the link. Scary. I thought about calling the nurse today, but got busy with a few school projects. The seroma under the arm seems a little smaller. If it's getting smaller, will it just heal up or fill up again? The upper part of my breast is like a rock. My breast is growing. So far, I only have one cording going down to the elbow. No...I just noticed...I have two cords...a new one forming.
I will call in the morning. Hopefully they will take me in tomorrow.
Thanks Kira for being here for us. I suppose, I will be coming back to this thread for support. Is it ok to be somewhat angry or just annoyed that I have to deal with this right now? I am also ticked that I wasn't strong enough on surgery day to walk out when I realized the surgeon planned to take the nodes out all along.. It seems that if there are side effects on a procedure or meds it happens to me. Sorry for venting....I haven't quite worked through the nodes being removed... especially since this is continuing!
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After my second lumpectomy, I learned that I was hypothyroid. Since taking thyroid meds I sweat more. I hardly ever sweat before taking thyroid meds. Maybe I should stop taking thyroid meds for awhile?
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Evebarry - I am hypothyroid, too. I cannot imagine stopping thyroid meds, even though I too sweat more now than before. For me, I'm not sure I'd be able to get out of bed w/o my thyroid meds. How do you think you'd do? Why would it be worthwhile to stop your meds for a few weeks?
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Eveberry, I take thyroid meds too, and I wouldn't advise stopping them--just get the level checked.
It's so normal to be angry at all of this. But if the fluid is making your breast hard, and you're cording, it's a crucial time to get some help.
I had three nodes out: 2 sentinel, and one that was "in the way". And I'm still mad about the lack of post op instruction and help when I got the seroma and cording. Trying hard not to be, but it's hard.
Kira
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kcsreve...I wondered if sweating has an effect on how much sentinal fluid produced. Just thought there might be a connection between sweating and sentinal fluid.
I also believe after trauma of any kind, you do go through a grief process...denial, anger and finally acceptance. I'm getting there. The hardest part for me is that the node removal procedure wasn't necessary and against my better judgement.
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