A short discussion of the lymph system (reprise)
![KathiM](https://us.v-cdn.net/6035652/uploads/pictures/npicture-58240.jpg)
But the lymph system is a bit different. It takes care of providing the cushioning fluid between the cells, and the nodes have the behavior of a traffic round...more of a directional system, than a suction/pressure system like the other two. For instance, when you scrape yourself without drawing blood, and a fluid appears, that's lymph at work! The lymph system eventually empties into the veins.
Once this sytem is compromised, like the sentinel node removal most of we lumpectomy/mastectomy patients have likely had (ask your surgeon), the 'traffic round' is removed, and so it is even harder for the fluid to get to and from the area around the cells. These removed sentinel nodes are special in that they are the first nodes connected to the breast, so it is a great indicator of cancer spread and determines treatment options. The next set of nodes removed receive more fluid from the upper arm than the sentinels, and so, if removed, are a bit more likely to cause blockage and swelling of the arm. There are other pathways in the arm that do not use this, and will, to some extent, shoulder the burden left by removal of nodes.
The idea of the 'special arm' is because it is hard to determine whose lymph system will continue to work, and whose won't, as a result of the surgery and the radiation to the area. As others have said, you need to be cautious with the arm...limit blood draws, do not have blood pressure cuff useage, etc...just to cut down on the chance of this trouble appearing. Just like people wearing seat belts in their car. BUT, that said, ask your doctor for exercises, etc that ARE ok...or ask for a referral to a special therapist to keep the arm as good as it can get.
Hugs, Kathi
(Thought I'd post it as a new thread...got this from both my beau, who is a doctor, and my radiation oncology nurse)
Comments
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Thanks for the seat belt
Thanks for the seat belt analogy, Kathi. I was so traumatized by EVERYTHING at first, that after rads, I focused on lymph massage and almost daily wore my sleeve. I freaked out at the tiniest cut on my bc side (left) arm. Then, I went to get my first flu shot ever and obediently rolled up my left sleeve, received the shot, and then just about fainted from fear and loathing in the doctor's office!
But nothing bad happened. I was fine. And I did not get the flu. It's been a year now. It took me a while to stop associating all my symptoms with cancer: that the numbness on that side is not cancer; that the achiness and pain in my arm and chest area is not cancer; that the occasional swelling is not cancer.
I got my toenails manicured in late August. I know it's silly, but I have loved watching my toenails grow until now all that's left is a little strip of vermillion at the very ends of my big toes. In a twisted way, it gives me the same thrill as seeing the first crocus in spring. OK, now you all know just how twisted I am! : )
These days I sometimes wear my sleeve; I know I will when I fly. I wear a sports bra if under my arm feels like it's a little swollen. The compression feels good.
I plan to go back to my lymphedema specialist over winter break to see if she can help break up some of the scar tissue that is causing the stiffness and aches and pains.
It's OK to relax and glory in the miracle that we are alive.
xoxoxoxo Lynn0 -
One of the things that theylynn1950 said:Thanks for the seat belt
Thanks for the seat belt analogy, Kathi. I was so traumatized by EVERYTHING at first, that after rads, I focused on lymph massage and almost daily wore my sleeve. I freaked out at the tiniest cut on my bc side (left) arm. Then, I went to get my first flu shot ever and obediently rolled up my left sleeve, received the shot, and then just about fainted from fear and loathing in the doctor's office!
But nothing bad happened. I was fine. And I did not get the flu. It's been a year now. It took me a while to stop associating all my symptoms with cancer: that the numbness on that side is not cancer; that the achiness and pain in my arm and chest area is not cancer; that the occasional swelling is not cancer.
I got my toenails manicured in late August. I know it's silly, but I have loved watching my toenails grow until now all that's left is a little strip of vermillion at the very ends of my big toes. In a twisted way, it gives me the same thrill as seeing the first crocus in spring. OK, now you all know just how twisted I am! : )
These days I sometimes wear my sleeve; I know I will when I fly. I wear a sports bra if under my arm feels like it's a little swollen. The compression feels good.
I plan to go back to my lymphedema specialist over winter break to see if she can help break up some of the scar tissue that is causing the stiffness and aches and pains.
It's OK to relax and glory in the miracle that we are alive.
xoxoxoxo Lynn
One of the things that they do where I was treated is to send all patients who had nodes removed to a group lymphedema class. It covers all the basics. They show you samples of sleeves, gauntlets, and leg compression garments (for those with nodes removed from the leg & pelvic area). They show you how to do lymph massage, give you handouts, talk about flying, answer questions. The person that teaches the class is a lymphedema PT and if anyone needs to consult her because they are having issues they can make an appointment after the class. We were told at any signs of swelling or problems to call for an appointment. I found it informative and reassuring to take this class. We were also told that two sleeves and gauntlets are covered each year if we need them. Before surgery I was sent to a breast care specialist and she explained all the options for surgery, talked about sentinel node dissection, answered questions, gave me two heart shaped little pillows which were wonderful to use when driving or lying down, and set me up with 2 online programs to watch. The first was having lumpectomy and the second having mastectomy. They were informative and even printed out questions to ask at the end. It covered sentinel node removal, possible wire quided procedures. You could watch both or either one (if you knew which procedure you had decided on). I found that having these to help before and after not only eased my mind but answered many of my questions. My medical group does a lot of this type of thing. Diabetes classes, nutrition, PHASE (preventing heart attacks & strokes everyday), etc. The cost is low and many are free and they really help to clarify things and give you tips on things related to the issue they deal with.
I wish more treatment groups did the breast cancer specialist visit and the lymphadema class after surgery. They were so helpful and I know many here would have appreciated them.
Stef0 -
I agree completely....fauxma said:One of the things that they
One of the things that they do where I was treated is to send all patients who had nodes removed to a group lymphedema class. It covers all the basics. They show you samples of sleeves, gauntlets, and leg compression garments (for those with nodes removed from the leg & pelvic area). They show you how to do lymph massage, give you handouts, talk about flying, answer questions. The person that teaches the class is a lymphedema PT and if anyone needs to consult her because they are having issues they can make an appointment after the class. We were told at any signs of swelling or problems to call for an appointment. I found it informative and reassuring to take this class. We were also told that two sleeves and gauntlets are covered each year if we need them. Before surgery I was sent to a breast care specialist and she explained all the options for surgery, talked about sentinel node dissection, answered questions, gave me two heart shaped little pillows which were wonderful to use when driving or lying down, and set me up with 2 online programs to watch. The first was having lumpectomy and the second having mastectomy. They were informative and even printed out questions to ask at the end. It covered sentinel node removal, possible wire quided procedures. You could watch both or either one (if you knew which procedure you had decided on). I found that having these to help before and after not only eased my mind but answered many of my questions. My medical group does a lot of this type of thing. Diabetes classes, nutrition, PHASE (preventing heart attacks & strokes everyday), etc. The cost is low and many are free and they really help to clarify things and give you tips on things related to the issue they deal with.
I wish more treatment groups did the breast cancer specialist visit and the lymphadema class after surgery. They were so helpful and I know many here would have appreciated them.
Stef
Knowledge is power! The 'extras' are what set excellent treatment centers apart from the regular.....
Hugs, Kathi0 -
I agree, Lynn!!!lynn1950 said:Thanks for the seat belt
Thanks for the seat belt analogy, Kathi. I was so traumatized by EVERYTHING at first, that after rads, I focused on lymph massage and almost daily wore my sleeve. I freaked out at the tiniest cut on my bc side (left) arm. Then, I went to get my first flu shot ever and obediently rolled up my left sleeve, received the shot, and then just about fainted from fear and loathing in the doctor's office!
But nothing bad happened. I was fine. And I did not get the flu. It's been a year now. It took me a while to stop associating all my symptoms with cancer: that the numbness on that side is not cancer; that the achiness and pain in my arm and chest area is not cancer; that the occasional swelling is not cancer.
I got my toenails manicured in late August. I know it's silly, but I have loved watching my toenails grow until now all that's left is a little strip of vermillion at the very ends of my big toes. In a twisted way, it gives me the same thrill as seeing the first crocus in spring. OK, now you all know just how twisted I am! : )
These days I sometimes wear my sleeve; I know I will when I fly. I wear a sports bra if under my arm feels like it's a little swollen. The compression feels good.
I plan to go back to my lymphedema specialist over winter break to see if she can help break up some of the scar tissue that is causing the stiffness and aches and pains.
It's OK to relax and glory in the miracle that we are alive.
xoxoxoxo Lynn
It's hard to see it when in the thick of battle. But, a day will come when all of the hard work during treatment will end, and the real reason for the work comes to the front....enjoying and living the rest of your life!
Hugs, Kathi0 -
Thanks Kathy... I remember
Thanks Kathy... I remember the first time I ever heard about it... about being careful after lympth nodes were removed... it was after my surgery, after the drains were out... after being sent down stairs from my oncologists office to the lab for a blood draw... I stuck out my left arm (bad side) and she put on the tourniquet and ouch!! I jumped because it hurt and she asked if she pinched my skin... I said... "No my arms just sore from my surgery two weeks ago they removed 13 lympth nodes"... she had that tourniquet off in a flash and proceeded to tell me no no no... you can't have blood draws on this arm... No one had told me anything about it... so I came home and jumped on line... to these boards... and I asked all of you...my wonderful warrior sisters... and you all came to my rescue and educated me where my surgeon failed miserably to do so!!
Thanks for posting this Kathy... some of us really have no clue...(like me)..lol... and knowing that we can sometime down the road ... just kind of forget.. well... it's a day that I look forward to with much anticipation!
Hugs,
~T0 -
I repeat myself, but if you missed previous lymphedema posttaleena said:Thanks Kathy... I remember
Thanks Kathy... I remember the first time I ever heard about it... about being careful after lympth nodes were removed... it was after my surgery, after the drains were out... after being sent down stairs from my oncologists office to the lab for a blood draw... I stuck out my left arm (bad side) and she put on the tourniquet and ouch!! I jumped because it hurt and she asked if she pinched my skin... I said... "No my arms just sore from my surgery two weeks ago they removed 13 lympth nodes"... she had that tourniquet off in a flash and proceeded to tell me no no no... you can't have blood draws on this arm... No one had told me anything about it... so I came home and jumped on line... to these boards... and I asked all of you...my wonderful warrior sisters... and you all came to my rescue and educated me where my surgeon failed miserably to do so!!
Thanks for posting this Kathy... some of us really have no clue...(like me)..lol... and knowing that we can sometime down the road ... just kind of forget.. well... it's a day that I look forward to with much anticipation!
Hugs,
~T
Compression sleeve can be bought in medical supplies store or from certified distributors. There are several companies which make them: Juzo (www.juzousa.com), Jobs, Madi. The most important is having a correct size, You can be measured in the store, or but better by lymphedema therapist.
If you want to be covered by insurance you need to call them and ask to recommend store which is in-network and taking your insurance. You also need to see lymphedema therapist to measure your arm to determine your size.
Ask you surgical /breast oncologist to recommend a specialist. In order to be reimburse by insurance You need a prescription.
I was given prescription twice initially by my Surgical oncologist and second time by my Radiologist.
This link could very useful http://www.lymphnet.org/.0
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