Lymphedema
Doris1933 posted:
It's been about a year and a half since my mastectomy (on the right side) and I never gave hardly a thought about lymphedema and no one mentioned it to me. Now my right hand and arm is swollen — not badly but enough for me to be concerned. It doesn't hurt. I saw a picture in WebMD showing lymphedema in the arm and it looked just like mine. I showed the swelling to my surgeon and oncologist at the scheduled checkups and both of them ignored it and didn't give me a chance to discuss it. Since then I have done a little research and a woman in the waiting room who had a bad case of lymphedema explained the massaging, etc. So I have been massaging it and elevating it. I can get it to almost like the good arm but it all comes back when I let the arm down for a while. I finally went to my primary care doctor who told me there were no clots (good pulse) and sent me to my surgeon. The nurse was probably told not to give me an appointment for two weeks. So I asked the primary care doctor to make the appointment for me, which she did. I went the next day. He ruled out a sleeve, a pump, massaging, physical therapist, etc. and told me to forget about it and that there are no limitations on the use of that hand/arm. He said it probably would always be swollen — so I'll live with one wrinkled bony hand and one fat hand (I am thankful I have two hands). I tried to ask him about the nodes and he said they were all gone from under the arm (which I didn't know). He said that's the price I paid for curing my cancer, which is true but insensitive, and he made a hasty exit to the door, as always.
I am beyond frustrated — it's like pulling eye teeth to get information from him. Why must we do research and make our own decisions when they are the experts?
My purpose in posting this: Are there any of you out there who have had the same experience? I would really like to hear from you. Maybe I'm being unreasonable and he is absolutely right in his assessment. I hope so. Doris1933
I am beyond frustrated — it's like pulling eye teeth to get information from him. Why must we do research and make our own decisions when they are the experts?
My purpose in posting this: Are there any of you out there who have had the same experience? I would really like to hear from you. Maybe I'm being unreasonable and he is absolutely right in his assessment. I hope so. Doris1933
8 Replies |Watch This Discussion | Report This| Share this:LymphedemaIt's been about a year and a half since my mastectomy (on the right side) and I never gave hardly a thought about lymphedema and no one mentioned it to me. Now my right hand and arm is swollen — not badly but enough for me to be concerned. It doesn't hurt. I saw a picture in WebMD showing lymphedema in the arm and it looked just like mine. I showed the swelling to my surgeon and oncologist at the scheduled checkups and both of them ignored it and didn't give me a chance to discuss it. Since then I have done a little research and a woman in the waiting room who had a bad case of lymphedema explained the massaging, etc. So I have been massaging it and elevating it. I can get it to almost like the good arm but it all comes back when I let the arm down for a while. I finally went to my primary care doctor who told me there were no clots (good pulse) and sent me to my surgeon. The nurse was probably told not to give me an appointment for two weeks. So I asked the primary care doctor to make the appointment for me, which she did. I went the next day. He ruled out a sleeve, a pump, massaging, physical therapist, etc. and told me to forget about it and that there are no limitations on the use of that hand/arm. He said it probably would always be swollen — so I'll live with one wrinkled bony hand and one fat hand (I am thankful I have two hands). I tried to ask him about the nodes and he said they were all gone from under the arm (which I didn't know). He said that's the price I paid for curing my cancer, which is true but insensitive, and he made a hasty exit to the door, as always.<br />I am beyond frustrated — it's like pulling eye teeth to get information from him. Why must we do research and make our own decisions when they are the experts? <br />My purpose in posting this: Are there any of you out there who have had the same experience? I would really like to hear from you. Maybe I'm being unreasonable and he is absolutely right in his assessment. I hope so. Doris1933
judyfams responded:
Doris,
Sounds like you need to go for a second opinion immediately. There are physical therapists who specialize in lymphedema massage. Lymphedema can occur at any time even years after surgery.
I would suggest that you contact a Cancer Care Center of America, or a major teaching hospital in your area and ask them to recommend a lymphedema specialist you can go to.
You could also call NOLA in New Orleans which has lymphedema specialists on staff that you can speak to. You could also call Memorial Sloan kettering in NY, or the Clevland Clinic or any other well known cancer center for more information as to how you go about getting treatment for suspected lymphedema.
Lymphedema is associated with the # of lymph nodes removed, and if you have had all your lymph nodes removed then you are probably a good candidate for some kind of massage therapy as well as a compression sleeve.
Check out NOLA's website for more information about lymphedema, it is a wealth of information and videos.
You also should have most of this kind of care paid for by insurance since it is a side effect of cancer surgery.
Please let us know what you find out.
Much good luck to you.
Judy
Sounds like you need to go for a second opinion immediately. There are physical therapists who specialize in lymphedema massage. Lymphedema can occur at any time even years after surgery.
I would suggest that you contact a Cancer Care Center of America, or a major teaching hospital in your area and ask them to recommend a lymphedema specialist you can go to.
You could also call NOLA in New Orleans which has lymphedema specialists on staff that you can speak to. You could also call Memorial Sloan kettering in NY, or the Clevland Clinic or any other well known cancer center for more information as to how you go about getting treatment for suspected lymphedema.
Lymphedema is associated with the # of lymph nodes removed, and if you have had all your lymph nodes removed then you are probably a good candidate for some kind of massage therapy as well as a compression sleeve.
Check out NOLA's website for more information about lymphedema, it is a wealth of information and videos.
You also should have most of this kind of care paid for by insurance since it is a side effect of cancer surgery.
Please let us know what you find out.
Much good luck to you.
Judy
Report This| Share this:LymphedemaDoris,<br />Sounds like you need to go for a second opinion immediately. There are physical therapists who specialize in lymphedema massage. Lymphedema can occur at any time even years after surgery.<br />I would suggest that you contact a Cancer Care Center of America, or a major teaching hospital in your area and ask them to recommend a lymphedema specialist you can go to.<br />You could also call NOLA in New Orleans which has lymphedema specialists on staff that you can speak to. You could also call Memorial Sloan kettering in NY, or the Clevland Clinic or any other well known cancer center for more information as to how you go about getting treatment for suspected lymphedema.<br />Lymphedema is associated with the # of lymph nodes removed, and if you have had all your lymph nodes removed then you are probably a good candidate for some kind of massage therapy as well as a compression sleeve.<br />Check out NOLA's website for more information about lymphedema, it is a wealth of information and videos.<br />You also should have most of this kind of care paid for by insurance since it is a side effect of cancer surgery.<br />Please let us know what you find out.<br />Much good luck to you.<br />Judy
Rachael67 responded:
Judy is telling you the right thing...And she didn't even use one of the four letter words that are racing through my head right now!! SHAME ON THOSE FOOLS!!!!!! That is not what a caring physician is about!! I hope you can locate someone who is there in your corner, who will support you, listen to you, answer your questions and your concerns...And then you can kick those idiots to the curb!!
Know that as angry as I am at them, I am equally supportive of you! Please let us know how you are doing! We care!
Blessings.
Rachael
Know that as angry as I am at them, I am equally supportive of you! Please let us know how you are doing! We care!
Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly!
Don't give up five minutes before the miracle!!
Don't give up five minutes before the miracle!!
Report This| Share this:LymphedemaJudy is telling you the right thing...<b>And she didn't even use one of the four letter words that are racing through my head right now!! SHAME ON THOSE FOOLS!!!!!!</b> That is <b><i>not </i></b>what a caring physician is about!! I hope you can locate someone who is there in your corner, who will support you, listen to you, answer your questions and your concerns...And then you can kick those <i>idiots</i> to the curb!!<br /> <br />Know that as angry as I am at them, I am equally supportive of you! Please let us know how you are doing! We care!<br /> <br />Blessings.<br />Rachael
cindy12345678 responded:
Doris,
They should not have blown this off. There are a number
of things that might help like message etc. I have had some
swelling in my hands(BI-Lateral) sometimes in the mornings.
I read a good book on lymphedema. The point of the book
was that you have to find the methods that work for you.
Ie like message or elevation, compression sleeves. They
said that different things work for different people.
I hope you can get some physical therapy. I don't
think you are being unreasonable.
Cindy
They should not have blown this off. There are a number
of things that might help like message etc. I have had some
swelling in my hands(BI-Lateral) sometimes in the mornings.
I read a good book on lymphedema. The point of the book
was that you have to find the methods that work for you.
Ie like message or elevation, compression sleeves. They
said that different things work for different people.
I hope you can get some physical therapy. I don't
think you are being unreasonable.
Cindy
Report This| Share this:LymphedemaDoris,<br />They should not have blown this off. There are a number<br />of things that might help like message etc. I have had some<br />swelling in my hands(BI-Lateral) sometimes in the mornings.<br />I read a good book on lymphedema. The point of the book <br />was that you have to find the methods that work for you.<br />Ie like message or elevation, compression sleeves. They<br />said that different things work for different people. <br />I hope you can get some physical therapy. I don't<br />think you are being unreasonable.<br />Cindy
mhall6252 responded:
Doris - here is a link to a lymphedema support board, developed by breast cancer survivors who participate in the discussions at www.breastcancer.org . The LE site is:
http://www.stepup-speakout.org/
There is a host of helpful information to help you deal with LE. One point - LE massage should be extremely gentle. I went to a certified LE therapist and she taught me how to do the self-massage, and I was amazed at how gentle a touch was recommended. You want to get the fluid moving through the system which apparently lies close to the surface of the skin. There are things you can do to protect yourself and limit the swelling. So the PT who told you to forget about it is DEAD WRONG!!!
As Judy suggested, compression garments that can help are covered by insurance. So go see a certified LE therapist and get help to prevent this from becoming debilitating.
Hugs,
http://www.stepup-speakout.org/
There is a host of helpful information to help you deal with LE. One point - LE massage should be extremely gentle. I went to a certified LE therapist and she taught me how to do the self-massage, and I was amazed at how gentle a touch was recommended. You want to get the fluid moving through the system which apparently lies close to the surface of the skin. There are things you can do to protect yourself and limit the swelling. So the PT who told you to forget about it is DEAD WRONG!!!
As Judy suggested, compression garments that can help are covered by insurance. So go see a certified LE therapist and get help to prevent this from becoming debilitating.
Hugs,
Michelle
Read my blog at www.mch-breastcancer.blogspot.com
Smile and the world smiles with you!
Read my blog at www.mch-breastcancer.blogspot.com
Smile and the world smiles with you!
Report This| Share this:LymphedemaDoris - here is a link to a lymphedema support board, developed by breast cancer survivors who participate in the discussions at <a rel="nofollow" href="http://www.breastcancer.org/">www.breastcancer.org</a> . The LE site is:<br /> <br /><a rel="nofollow" href="http://www.stepup-speakout.org/">http://www.stepup-speakout.org/</a> <br /> <br />There is a host of helpful information to help you deal with LE. One point - LE massage should be extremely gentle. I went to a certified LE therapist and she taught me how to do the self-massage, and I was amazed at how gentle a touch was recommended. You want to get the fluid moving through the system which apparently lies close to the surface of the skin. There are things you can do to protect yourself and limit the swelling. So the PT who told you to forget about it is DEAD WRONG!!!<br /> <br />As Judy suggested, compression garments that can help are covered by insurance. So go see a certified LE therapist and get help to prevent this from becoming debilitating.<br /> <br />Hugs,
MBH34351 responded:
You've gotten some great advice here. I want to stress that you must, must, must get a sleeve to wear when you fly. You might want/need to wear it daily but you absolutely must wear it when you fly.
I've had lymphedema since 2003 and it has been one of the worst parts of this entire experience. Please keep hounding your docs until someone hears and responds!
Mary (swollen and angry) Beth
I've had lymphedema since 2003 and it has been one of the worst parts of this entire experience. Please keep hounding your docs until someone hears and responds!
Mary (swollen and angry) Beth
Report This| Share this:LymphedemaYou've gotten some great advice here. I want to stress that you must, must, must get a sleeve to wear when you fly. You might want/need to wear it daily but you absolutely must wear it when you fly. <br /> <br />I've had lymphedema since 2003 and it has been one of the worst parts of this entire experience. Please keep hounding your docs until someone hears and responds!<br /> <br />Mary <i>(swollen and angry)</i> Beth
JLAMB26 responded:
Doris:
Please get a 2nd opinion. I too developed lymphedema about 8 months after my mastectomy and node removal. My doctor didn't seem to take it seriously either but I insisted on getting a 2nd and 3rd opinion. I'm finding that there is a lack of information/understand and conflicting treament advise regarding lymphedema in the medical community. 6 months later, I am on my 2nd physical therapist who has been wonderful. The first was treating me more for pain than the real issue. I recently attended a workshop on the topic and learned some new things that I shared with my new therapist. Bandaging 24/7 seems to help the most until you have it under control. I've also been told to exercise while bandaged to help move the fluid (this goes against everything the first therapist and doctor told me). I was just measured last week and my arm shrunk almost 6 inches! Maintaining and/or losing weight is also one of the best things you can do to help control lymphedema (easier said than done:)!! Good luck and I hope this helps.
Jennifer
Please get a 2nd opinion. I too developed lymphedema about 8 months after my mastectomy and node removal. My doctor didn't seem to take it seriously either but I insisted on getting a 2nd and 3rd opinion. I'm finding that there is a lack of information/understand and conflicting treament advise regarding lymphedema in the medical community. 6 months later, I am on my 2nd physical therapist who has been wonderful. The first was treating me more for pain than the real issue. I recently attended a workshop on the topic and learned some new things that I shared with my new therapist. Bandaging 24/7 seems to help the most until you have it under control. I've also been told to exercise while bandaged to help move the fluid (this goes against everything the first therapist and doctor told me). I was just measured last week and my arm shrunk almost 6 inches! Maintaining and/or losing weight is also one of the best things you can do to help control lymphedema (easier said than done:)!! Good luck and I hope this helps.
Jennifer
Report This| Share this:LymphedemaDoris:<br />Please get a 2nd opinion. I too developed lymphedema about 8 months after my mastectomy and node removal. My doctor didn't seem to take it seriously either but I insisted on getting a 2nd and 3rd opinion. I'm finding that there is a lack of information/understand and conflicting treament advise regarding lymphedema in the medical community. 6 months later, I am on my 2nd physical therapist who has been wonderful. The first was treating me more for pain than the real issue. I recently attended a workshop on the topic and learned some new things that I shared with my new therapist. Bandaging 24/7 seems to help the most until you have it under control. I've also been told to exercise while bandaged to help move the fluid (this goes against everything the first therapist and doctor told me). I was just measured last week and my arm shrunk almost 6 inches! Maintaining and/or losing weight is also one of the best things you can do to help control lymphedema (easier said than done:)!! Good luck and I hope this helps.<br />Jennifer
Doris1933
I want to thank every one of you who responded to my lymphedema problem. I felt so alone and helpless, more than at any time since my surgery - because I didn't know what to do and there was nobody to tell me what to do. I was used to relying on the doctors and I felt that they had let me down. I'm not upset with them anymore because I realize it was their way of saying "I don't know". I discovered they only have about 1 hour of instruction on wrapping and lymphedema in medical school. Anyway, now I think I've overcome the depression (which surprised me when I recognized it) , and want ya'll to know how much I appreciate you and this forum.
I went back to the oncologist who had dismissed the swelling, saying that it was common for women with mastectomies to have the swelling and I shouldn't be alarmed about it. I felt my jaw drop - that was a good reason, ---because it was common?!!!!!!!!! I then asked him for an order for a lymphedema therapist and compression garments. He wasn't very happy about it but after I repeated my request for a compression sleeve, he wrote the prescription. It wasn't an easy thing for me to do, but by that time I had had enough. BTW, I had a plan B: my primary care doctor.
First of all, since I was on my own, I read everything I could find about LE. Everything I read said essentially the same thing so I figured it must be right. I looked up all the CLTs in my area, found none in my town, but settled on one about 25 miles away. We've talked on the phone numberous times and I have an appointment now for Wednesday Nov. 23 for evaluation and treatment plan, and feel good about it . I am supposed to get/order my sleeve and glove/gauntlet at that time. I will post again after the appointment to update this saga. Another site that I found very, very helpful is: http://www.stepup-speakout.org/
Love to all.....Doris1933
I want to thank every one of you who responded to my lymphedema problem. I felt so alone and helpless, more than at any time since my surgery - because I didn't know what to do and there was nobody to tell me what to do. I was used to relying on the doctors and I felt that they had let me down. I'm not upset with them anymore because I realize it was their way of saying "I don't know". I discovered they only have about 1 hour of instruction on wrapping and lymphedema in medical school. Anyway, now I think I've overcome the depression (which surprised me when I recognized it) , and want ya'll to know how much I appreciate you and this forum.
I went back to the oncologist who had dismissed the swelling, saying that it was common for women with mastectomies to have the swelling and I shouldn't be alarmed about it. I felt my jaw drop - that was a good reason, ---because it was common?!!!!!!!!! I then asked him for an order for a lymphedema therapist and compression garments. He wasn't very happy about it but after I repeated my request for a compression sleeve, he wrote the prescription. It wasn't an easy thing for me to do, but by that time I had had enough. BTW, I had a plan B: my primary care doctor.
First of all, since I was on my own, I read everything I could find about LE. Everything I read said essentially the same thing so I figured it must be right. I looked up all the CLTs in my area, found none in my town, but settled on one about 25 miles away. We've talked on the phone numberous times and I have an appointment now for Wednesday Nov. 23 for evaluation and treatment plan, and feel good about it . I am supposed to get/order my sleeve and glove/gauntlet at that time. I will post again after the appointment to update this saga. Another site that I found very, very helpful is: http://www.stepup-speakout.org/
Love to all.....Doris1933
Report This| Share this:LymphedemaDoris1933<br />I want to thank every one of you who responded to my lymphedema problem. I felt so alone and helpless, more than at any time since my surgery - because I didn't know what to do and there was nobody to tell me what to do. I was used to relying on the doctors and I felt that they had let me down. I'm not upset with them anymore because I realize it was their way of saying "I don't know". I discovered they only have about 1 hour of instruction on wrapping and lymphedema in medical school. Anyway, now I think I've overcome the depression (which surprised me when I recognized it) , and want ya'll to know how much I appreciate you and this forum. <br />I went back to the oncologist who had dismissed the swelling, saying that it was common for women with mastectomies to have the swelling and I shouldn't be alarmed about it. I felt my jaw drop - that was a good reason, ---because it was common?!!!!!!!!! I then asked him for an order for a lymphedema therapist and compression garments. He wasn't very happy about it but after I repeated my request for a compression sleeve, he wrote the prescription. It wasn't an easy thing for me to do, but by that time I had had enough. BTW, I had a plan B: my primary care doctor.<br />First of all, since I was on my own, I read everything I could find about LE. Everything I read said essentially the same thing so I figured it must be right. I looked up all the CLTs in my area, found none in my town, but settled on one about 25 miles away. We've talked on the phone numberous times and I have an appointment now for Wednesday Nov. 23 for evaluation and treatment plan, and feel good about it . I am supposed to get/order my sleeve and glove/gauntlet at that time. I will post again after the appointment to update this saga. Another site that I found very, very helpful is: <a rel="nofollow" href="http://www.stepup-speakout.org/"><u><a href="http://www.stepup-speakout.org/">http://www.stepup-speakout.org/</a></u></a> <br />Love to all.....Doris1933<br />
kayjoedwards responded:
Have a look at this website... http://www.gohealthysteps.com/
The "healthy steps" or lebed method is an exercise program that specifically targets lymphedema. If you're lucky, there is an instructor/program near you. I've been in a program for 2 years since my surgery. It's fun and really great to get together with other women who are going thru the same thing.
If there isn't one near you, you can get info on the site about the exercises that are designed to help promote lymph flow and relieve the symptoms of lymphedema.
Best of luck
kayjo
The "healthy steps" or lebed method is an exercise program that specifically targets lymphedema. If you're lucky, there is an instructor/program near you. I've been in a program for 2 years since my surgery. It's fun and really great to get together with other women who are going thru the same thing.
If there isn't one near you, you can get info on the site about the exercises that are designed to help promote lymph flow and relieve the symptoms of lymphedema.
Best of luck
kayjo
Report This| Share this:LymphedemaHave a look at this website... <a rel="nofollow" href="http://www.gohealthysteps.com/">http://www.gohealthysteps.com/</a> <br /> <br />The "healthy steps" or lebed method is an exercise program that specifically targets lymphedema. If you're lucky, there is an instructor/program near you. I've been in a program for 2 years since my surgery. It's fun and really great to get together with other women who are going thru the same thing.<br />If there isn't one near you, you can get info on the site about the exercises that are designed to help promote lymph flow and relieve the symptoms of lymphedema.<br />Best of luck<br />kayjo
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