I have been asking for the purpose of advising women not to have their bloods drawn, and/or blood pressure taken on the side where they had a mastectomy.
Every response so far has been a guess. Since I only have one good vein in my right arm, and this is where I had the mastectomy, lab technicians have a hard time getting a vein on the left side. Sometimes I get stuck three times and then they end up on the other side anyway. So, this last time I withheld the information about not using my right arm, and the lab technician made the tourniquet so very tight that I immediately regretted my decision. sure enough, I developed this cord-like, tight string which goes starts under my arm and goes one third down my upper arm. (I had many lymph nodes removed.)
My question is twofold. What really is the purpose of advising about the blood drawing and BP? And my second question is what may have happened. Is this lymphadema, or a vein or a tendon or what else could it be. The skin is sore and this string like thing is very thin and very hard, but there is no infection or discoloration present, really, and very little swelling. much of the tissue under my arm feels otherwise like scar tissue. Should I be concerned? I asked my family doctor about this since I had to see her for something else, but she did not know what it was and also she did not know the reason for avoiding needles and BP cuffs on arm where you had the mastectomy. She felt maybe this advice was outdated? Nobody else I asked did anything but make wild guesses as well. i thought this may be of interest to others here as well. thank you in advance for reading my question.
How are you? When the lymph nodes under the arm have been removed, a woman is at higher risk of lymphedema. Poor drainage of the lymphatic system may cause the affected arm to be more susceptible to infection and to be less sensitive to extreme temperatures. In addition to swelling of the affected arm, the following are the most common symptoms of lymphedema: feeling of fullness or tightness in the affected arm, aching or pain in the affected arm, swelling in the hand, or weakness in the affected arm. Protection of the affected arm is very important after breast surgery. Persons with lymphedema should avoid injury and infection and should be aware of those activities that put too much pressure on the affected arm such as injections and blood tests.
Treatment for lymphedema depends on the severity and extent of the condition. If the condition persists, a visit to your specialist may be of help. I hope this helps. Take care and keep us posted.
The answer to your question is very simple and well known; I'm suprised that you had difficulty in getting it. When a mastectomy is done there is also removal of some # of lymph nodes to be tested for cancer invasion. Once the lymphatic flow is disturbed or comprimised there is the possibility of developing lymphedema. The no needle stick theory is that this might cause some inflammation although that is pretty far fetched with blood draws under sterile conditions. One should be cautious of cuts, scratches, etc. like when gardening an such. Cellulitis can develop under these conditions. The B/P thing is that the circulation is cut off to that arm and so is the flow of lymphatic fluid. There are more who don't believe in these theories than those who do but it's wise to take some precautions if you have had lymph nodes removed. I recently had hand surgery on the operative side and the surgeon didn't believe in either theory .. needed a tourniquet on the arm for the duration of the procedure. He did agree to put it below my elbow but still maintained that the theory has never been proven.
Thank you very much for your responses. The people I asked guessed and I can do that as well, but I wanted a real answer. I am also concerned about this rope like thing which begins under my arm and goes half way, or more down to my elbow. I had all the lymph nodes removed because so many were affected, and not only the ones in the axilla. I had IBC. And that tourniquet really hurt, nothing like that little needle stick.
Thank you for asking. No, it has not changed and is still the exact same. It does not really hurt but it feels very weird and not normal and unfamiliar and you can see it externally how as well. It feels strange when you use a bar of soap while showering. Uncomfortable, not painful.
Better recovery occurs when lymphedema is discovered early, in your case, the feeling of tightness in the arm should be mentioned to your doctor. Lymphedema can be treated by physical methods and with medication. Physical methods include supporting the arm in a raised position, manual lymphatic drainage and cleaning the skin carefully to prevent infection. Here is a link that could be helpful: http://www.cancer.gov/cancertopics/pdq/supportivecare/lymphedema/Patient/page3
Take care and regards.
I had a left breast resection 4 weeks ago, and also have the stringy thing in my armpit working its way down to my elbow, in fact I now have 3 of them, with no answers from my doc's. I find it quite painful, and was hoping to find answers here. Keep us informed, and good luck.
My radiation oncologist called me today about something totally unrelated and then I asked her after that was taken care of, if I could ask her a question. I told her I had this tight string like cord in my arm originating under my arm..... She responded by saying: "OH, I just had a patient who presented with the same problem and I sent her to physical therapy. Would you like me to write you a prescription for physical therapy?"
I told her yes, if this was what she thought was best, but also that I didn't know what this was and if I should be worried about this, and if this was Lymphedema. She did not answer my question and told me the physical therapist could tell me more about what it was.
So, I told her that I just didn't know if this was a tendon, or a vein, or a muscle and if she thought it may be a tendon.
She said she thinks so, but that was all she offered. She said they would most likely call me on Monday and then bill my insurance.
So, i will keep you posted. yes, weird that nobody is answering to this, isn't it? Actally, one doctor on another forum said it was lymphedema related/ Specifically, he said it was the latter, when I suggested two options and in this case my second option was Lymphedema.
The website the doctor included her did not say anything about our symptoms.
I am experiencing the same violin string phenomenon...Mine goes from my armpit where 30 lymph nodes were removed to the inside of my elbow and then across my forearm to my wrist at my thumb. I had an appointment today at a lymphedema clinic and was told that although I have no visible swelling, that it is related to lymph fluid putting pressure on my muscles and nerves. This is a totally unsatisfying answer to me, as I still don't understand what those strings are. Have you come across any more information since you last posted?
They use to take blood pressure in the leg to pre vent these things.....they really should not use the arm on the side of mastectomy, They also use to have the pt wallk there fingers up the wall for exercises, do they do that anymore?
Yes, I got a lot of good information from my physical therapists, especially the third one and whom I now seeing on a regular basis with one or two others once in a while.
My main person actually has a PhD in PT, and she is greater than I could have ever imagined possible. And so are the others. They really know so much more than any doctor about this. So, this is what she said. her name is Jessica. She said Lymphedema is a condition limited to swelling of the arm and or chest area. So in order for this particular diagnosis you must have swelling and which I don't have. (you will also find that the sites discussing lymphedema only talk about the swelling and sometimes it feels like tightness but is different from what we have.) I, like you, had about 20 lymph nodes removed and most of them were cancerous. Jennifer explained that the lymphatic system sort of resembles the vascular system in that it is spread out throughout the body. The lymph nodes themselves are connected through/by lymphatic vessels. Our surgeons removed the nodes but he/she did not remove most of the vessels. In turn, just like is true for other tissue, those vessels become scar tissue, and scar tissue builds up over time. Therefore, fibroid lymphatic vessels are the consequence of removal of lymph nodes. And what happens is that they turn into hard bands , or cords. (Of course, being so close and intertwined with muscles, etc, this also affects the muscles and other tissues, like nerves)
The treatment is to stretch these cords, and PT is at least from my people super helpful. At this point, and my surgery was in December, of course my whole neck and shoulder area is tight and my range of motion greatly reduced. these cords come and go. The one I talked about disappeared and two new ones showed up. jessica says this will keep on happening and although it is not exactly lymphedema, it is of course related and what we have puts us at much higher risk for developing the swelling as well. Eventually, she says, the body may be able to digest those lymphatic vessels, but I cannot say that I understood this well enough to repeat correctly here. Hope this helps. Kat. PS: I hope a lot of people read this since a lot of people have it.
Thank you so much! I now know what to ask for when I go back to my oncologist next week. They gave me some good information at the lymphedema clinic, like severely limiting salt intake, massaging in a "v", and elevating my arm (all of which seem to be helping) but they seemed to just kind of blow me off when I didn't technically have lymphedema. Not knowing what it was, I was afraid to stretch them too much, but it is good to know that that is exactly what I should be doing. Good luck and many blessings to you in your journey...-Lori
PS: yesterday we were discussing this again and I thought I would update you especially since you just responded and I happened to have my e-mail on. She said two interesting things. The worst case of what she has seen was in a woman who only had one lymph node removed. The other thing she said was that this did not used to be a problem nearly as much in the past as it is now. meaning, it's a new thing that they see this so much in recent years and that is maybe why so many doctors don't know what it is. maybe you can ask your oncologist about that and why this may be. i see mine next week. i thought it may be related to the sentinel node removal they do now? i have no clue. lets keep in touch about this. kat.
Thanks for sharing in the discussion, kathleen. that is really helpful information and I hope as many of us possible will continue to share new discoveries. I wrote two long comments over the weekend but my password did not work and I wasn't able to post. Thanks again, and hope it goes well. i have been at this PT for three weeks? and it's wonderful but don't expect to see major results right away. kat
Thanks for your post, found your thread...
What I could find sofar was mainly the suggestion to do phisio or Masaging.
It seems that some times the masaging and or Phiso will snap the cording and this cases a imidiate relife for the Paitient (ROM and pain)
I found this info in an article: Physical Therapy Treatment of Axillary Web Syndrome, by Kepics, Jane M
Try this link:
Good luck to all
I also had lymph nodes removed at the lumpectomy surgery in November 2006. Ten nodes were removed, all negative. By the way, the doctor decided to go ahead and remove the 10 nodes for peace of mind because my sentinal node was never found. I think that when I had my initial biopsy, they accidentally removed the sentinal node. I was so unprepared for the painful nuclear medicine injections when I went to the hospital for all of the tests. I almost passed out, it was so bad and it was all for nothing because they never found my sentinal node. Anyway, I also developed the tight rope-like feeling on my left, lymphodema side arm. It sort of came and went for a long time and now it is pretty much gone, knock on wood. I did have therapy for my lymphedema but I don't know if this is what helped the rope-like bands disappear. I mentioned it to all of my doctors and none of them really had a good answer for me of what they were. They did all say, however, that lymphedema does not cause pain. I have a hard time believing this, even though this is what all of the text books and doctors claim. I have read too many first hand experience blogs that suggest otherwise. It is so frustrating when you don't feel like your voice is being heard.
So Katrina777, I hope the tightness eases up on your arm as it did in my case.
Thanks for sharing your story, or some of it. I am going to ask my PT on Monday about the pain, and if it causes pain or not. (and that does not mean I am questioning you at all.) I just want a response and these guys, or this woman I work with knows an awful lot and they are all certified in Lymphedema massage and all this. When she doesn't know something, she always tells me. also, I will be seeing another one who is really great next week in the same place. my primary one has a PhD in physical therapy, and they are all so great, and really interested and all of them decided this was what they wanted to do and be as young teenagers. They are so holistic and broad minded. i will let you know, Ok, just so we can get another opinion. take care for now, and please, if you have more to say, i would really like to know. I was supposed to have that nuclear shot before surgery but nobody told me about it and my surgeon was not pleased, but I think he did not blame me. all my sentinel nodes were positive and it turned out this shot was not necessary. but now that you are telling me how painful it was I am glad nobody told me.
It has a name!! Axillary Web Syndrome. I just read 1 article from the University of Washington (the first listing if you type Axillary Web Syndrome into Google) and they say that it tends to get better on its own. My own experience to date is that now, 2 months post-op, it is becoming much less painful. I have been doing a lot of stretching and elevating on my own, though. The bad news is that I have visible swelling for the first time today. Maybe the treatment that your pt has prescribed will be effective in warding off the swelling? Anyway, when I saw my oncologist last week, she did not seem to know much about the symptoms I was describing either. Maybe educating our doctors will be a helpful thing for other women down the road.
Let me introduce myself. I'm Chris the Breast Cancer Community Leader. I just finished reading your whole thread and you guys are right on! I saw an O.T. certified in lympheda treatment. We did a lot of stretching and she did massage on my arm, my side where the drains were, and my axilla, where I had an enormous cord that had a seroma on it! The drs drained the seroma (all benign fluid), and my O.T. did her massage thing and the cord is gone. It used to look like I had two arm pits! O.T./P.T. is the way to go! (In my opinion. . . .) ;)
Hi friend, if you read this whole thread, then you are really 'good'. I read a bunch of your answers and on your profile too.
I read about the announcement that you were the community leader but I never saw you until yesterday.
Great responses, BTW, and very kind as well.
Thank you for connecting and all, Kat
I forgot to ask my PT about the lymphedema and pain thing when I planned on doing so. Today I remembered. Now, the cords are not exactly the same as lymphedema by definition, and I think you know that. The latter condition is limited to swelling/edema anywhere in the area where the breast was removed, and the arm on that side. (of course there are different types, etc, but just for our purposes I thought I mention this)
This is what my PT said. she said, yes, lymphedema can and is often painful, and especially secondary to the swelling. The edema tends to place pressure on nerves, and that can cause various symptoms of discomfort, pain, issues with mobility, and also weird sensations.
Just wanted to follow up on what I said I would find out. kat
In the last month, I have had a lumpectomy and a sentinel node biopsy with seven lymphnodes removed. Over the last few days, I have noticed that tight string that you are all describing except that it is under my breast. It is really tight and it hurts. What is this?!?
Well, we already talked about what it is. Supposedly, these are lymph channels in combination with scar tissue.
If you look up a picture online of the Lymphatic system, there are also lymph ndes in the breast and under the breast, although not quite as many as in the arm and axilla.
It would make a lot of sense to me, that these cords may be of a slightly different nature in a person who had a lumpectomy vs. a mastectomy.
In summary, I think we are all talking about the same thing, but since you still have breast tissue left, including lymph nodes/channels in and under the breast, and several nodes were removed under your arm, that yours are located where you say they are, under the breast. that does sound very, very uncomfortable and you should also know that they tend to come and go.
It sounds like a lot of us were helped by PT, and so may you. All the scar tissue can cause tightness and problems.
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