Has anyone gone to Physical therapy to deal with breast and arm swelling (lymphedema)?

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KayNYC
KayNYC Member Posts: 495 Member
edited March 2014 in Breast Cancer #1
I spoke with my doctor on Thursday and asked him what more could I do for the arm and breast swelling that gets worse over the course of the day. By the time I leave the office in the evening, I am removing my watch and can't stand anything on my arm or breast. My affected breast is red but the Onc feels that it is in good condition. I have 9 treatments left to go. I have been watching my sodium intake and never add salt to my food. I am hoping that the lymphedema specialist can suggest exercises or massage techniques that will be helpful. I will ask about the ocmpression sleeve since I am hoping to get away by the end of the summer to visit family in Florida, requiring airplane travel of several hours. What have been your experiences with this problem?
K
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  • jnl
    jnl Member Posts: 3,869 Member
    #2
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    I didn't get lymphedema,
    I didn't get lymphedema, but, I know several on here take physical therapy for it and it seems to help them. Good luck to you!
  • Katz77
    Katz77 Member Posts: 598
    #3
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    Ohhh Yeahhh
    Know what u mean. I exercise w a "squishy" ball. My husband has a hard time opening lids now. Got me quite a grip. I also elevate my arm. Make sure elbow is above chest. I'm pretty good about doing this every evening or when I'm watching TV. I also have a "sock". It's a compression stocking. I got mine from a medical supply store. They'll measure your arm and it takes a couple of weeks to get it. The name beins w a "J". Can't remember. drrrrr. They come in colors, so you'll be the fashion statement at social circles. lol Mmmmm oh I wear mine when at work, or computer. Seems to get puffy at these times. I also lift a 10lb weight. Started w 5lb though. I just kind of did my own thing. It may be different for you. Ask ur Onc if your able to do these activities. Don't want to steer you wrong. It will be a constant in ur life. I hated the thought of that. Oh well, it's working, so you gotta do what you gotta do. Good luck, Gayla
    P.S. My insurance pays half the cost, and I'm allowed 6 a year. Yeaaa! Think the cost for cash pay is around 40.00.
  • aisling8
    aisling8 Member Posts: 1,627 Member
    #4
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    Katz77 said:

    Ohhh Yeahhh
    Know what u mean. I exercise w a "squishy" ball. My husband has a hard time opening lids now. Got me quite a grip. I also elevate my arm. Make sure elbow is above chest. I'm pretty good about doing this every evening or when I'm watching TV. I also have a "sock". It's a compression stocking. I got mine from a medical supply store. They'll measure your arm and it takes a couple of weeks to get it. The name beins w a "J". Can't remember. drrrrr. They come in colors, so you'll be the fashion statement at social circles. lol Mmmmm oh I wear mine when at work, or computer. Seems to get puffy at these times. I also lift a 10lb weight. Started w 5lb though. I just kind of did my own thing. It may be different for you. Ask ur Onc if your able to do these activities. Don't want to steer you wrong. It will be a constant in ur life. I hated the thought of that. Oh well, it's working, so you gotta do what you gotta do. Good luck, Gayla
    P.S. My insurance pays half the cost, and I'm allowed 6 a year. Yeaaa! Think the cost for cash pay is around 40.00.

    Sorry
    Kay,

    I'm sorry to see that you're struggling with this situation. Sounds like a concern and no fun at all.

    Wishing you good luck with it,

    Victoria
  • carkris
    carkris Member Posts: 4,553 Member
    #5
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    aisling8 said:

    Sorry
    Kay,

    I'm sorry to see that you're struggling with this situation. Sounds like a concern and no fun at all.

    Wishing you good luck with it,

    Victoria

    I dont have lymphadema but I
    I dont have lymphadema but I do get PT. she checks and has done massage. I find it helpful
  • mickeymom
    mickeymom Member Posts: 117
    #6
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    PT can help alot
    My surgeon sent me to PT few weeks after my surgery (mastectomy). They started me on lymph massage - which is great and works wonders. I don't have lymphedema and no issues with my arm, but I get swelling by end of the day on my side, under my arm. I still do the lymph massage everyday (it's been just over a year since my surgery) to help with the swelling and hopefully keep from every getting lymphedema. I just saw them a month ago for some follow up. They gave me lots of information about what radiation can do to your scar area and how to handle it.

    They also had me to scar massage to cut down on the scar tissue. They gave me stretches to get back my range of motion and strength exercises to work on the loss of power in my shoulder. I'm headed to Hawaii this summer and I'm thinking I might get a compression sleeve for that flight too. My insurance covers most of it my PT.

    Good luck and have fun in Florida!
  • Rague
    Rague Member Posts: 3,653 Member
    #7
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    I've been seeing my
    I've been seeing my Lymphedemolist since Jan. We are finally getting close to finding the right combination. The first night sleeve is good but the day sleeves and gloves have been a BIG problem.. Friday I picked up my most recent custom sleeves which are the lightest compression and are working good but will have to get light compression gloves ordered.

    If you are having problems, the sooner you see a Lymphedemologist the better. They can teach you massage techniques that help and do massages. They can get you started on finding the right compression sleeves and gloves (day and night)
  • Lynda53
    Lynda53 Member Posts: 210
    #8
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    Yepper, PT/OT and a sleeve
    I am supposed to wrap the arm 23 hrs a day, am waiting for a comp sleeve. The comp wrap is very tiresome. Lymphodema can be rather painful and permanent. My gf has 1 arm the size of her thigh, 7 years!
    OT taught massaging other lymph nodes to create suction, it seems to work. I had 29 lymph nodes removed, 11 were nasty C.
    Obv, avoid repetitious movements of r arm, it makes a big difference as does the sleeve.
    I excerise the arm a minimum 30 mins a day, and have 1.5 hrs of OT 3x a week, reange of motion included.
    Get a sleeve asap, some look like tattoos and you o nly need them during the day!
    Peace
  • ladyg
    ladyg Member Posts: 1,577
    #9
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    lymphedema
    I have the lymphedema thing going on too. My onc recommended a therapist who is certified in working with this condition. I have seen her twice. The very first time I went in she told me that I should get a compression sleeve and pointed me in the right direction for that. I got one 2 days later and wear it during the day. She also did a massage treatment and showed my husband how to do it so he could help me. I went back the second time and she did another treatment and added a few little things to what my husband was doing. He is really great and gives me a massage every night. Some of the massage I can actually do for myself but he insists on doing it and I love the pampering! The therapist also told me not to even think about flying without the sleeve so I think you should really see the specialist and get a sleeve.


    Hugs
  • RE
    RE Member Posts: 4,591 Member
    #10
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    PT & Lymphedema
    Hi Kay, I have been dealing with lymphedema for about 5 years now. I go for PT about twice a year 6 weeks sessions 3 times a week each time. It helps but has to be done by someone who is qualified as the treatment must be done gently and correctly so as not to cause more pain and swelling.

    Please look into getting a compression sleeve (I wear mine daily) as they can help to reduce the pain and sweeling you are having. If you are interested I have several pages of information regarding Lymphedema on onco. gave me listed on my page here on csn. They are on page 24 of my expressions you can get there by clicking on my name. If you have not visited this site there is a lot of good information here as well.

    Lymphedema

    Hope this helps,

    RE
  • washoegal
    washoegal Member Posts: 45
    #11
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    Sound funny I know but I am relieved to hear your story........
    I have had all my lymph nodes removed under right arm due to malignant melanoma. I posted question on skin cancer site but no response, seems like maybe this is where I'll find similar experience. I have a compression sleeve. Only worn it once, damn uncomfortable and thank goodness little swelling in arm. But Breast swells and turns red like it is sun burned. I get pockets of fluid build up under arm and on my back. One was so large it finally burst open and I went to emergency. I am 2 1/2 months from my last surgery.

    I am wondering if this ever go away or at least slows down. Onc. seems non-commital. There is only one certified massage therapist for this problem in our area that I've been able to find and she's quite a ways away.
  • Megan M
    Megan M Member Posts: 3,000
    #12
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    RE said:

    PT & Lymphedema
    Hi Kay, I have been dealing with lymphedema for about 5 years now. I go for PT about twice a year 6 weeks sessions 3 times a week each time. It helps but has to be done by someone who is qualified as the treatment must be done gently and correctly so as not to cause more pain and swelling.

    Please look into getting a compression sleeve (I wear mine daily) as they can help to reduce the pain and sweeling you are having. If you are interested I have several pages of information regarding Lymphedema on onco. gave me listed on my page here on csn. They are on page 24 of my expressions you can get there by clicking on my name. If you have not visited this site there is a lot of good information here as well.

    Lymphedema

    Hope this helps,

    RE

    I didn't get it, and, I am
    I didn't get it, and, I am grateful for that. Re posted a great site to go to.

    Good luck!
  • jnl
    jnl Member Posts: 3,869 Member
    #13
    Options
    Katz77 said:

    Ohhh Yeahhh
    Know what u mean. I exercise w a "squishy" ball. My husband has a hard time opening lids now. Got me quite a grip. I also elevate my arm. Make sure elbow is above chest. I'm pretty good about doing this every evening or when I'm watching TV. I also have a "sock". It's a compression stocking. I got mine from a medical supply store. They'll measure your arm and it takes a couple of weeks to get it. The name beins w a "J". Can't remember. drrrrr. They come in colors, so you'll be the fashion statement at social circles. lol Mmmmm oh I wear mine when at work, or computer. Seems to get puffy at these times. I also lift a 10lb weight. Started w 5lb though. I just kind of did my own thing. It may be different for you. Ask ur Onc if your able to do these activities. Don't want to steer you wrong. It will be a constant in ur life. I hated the thought of that. Oh well, it's working, so you gotta do what you gotta do. Good luck, Gayla
    P.S. My insurance pays half the cost, and I'm allowed 6 a year. Yeaaa! Think the cost for cash pay is around 40.00.

    I forgot to say that the
    I forgot to say that the compression sleeve seems to help many. But, you need to be fitted for it. Ask your oncologist. He should be able to help you. And, you should wear it if you fly.
  • KayNYC
    KayNYC Member Posts: 495 Member
    #14
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    washoegal said:

    Sound funny I know but I am relieved to hear your story........
    I have had all my lymph nodes removed under right arm due to malignant melanoma. I posted question on skin cancer site but no response, seems like maybe this is where I'll find similar experience. I have a compression sleeve. Only worn it once, damn uncomfortable and thank goodness little swelling in arm. But Breast swells and turns red like it is sun burned. I get pockets of fluid build up under arm and on my back. One was so large it finally burst open and I went to emergency. I am 2 1/2 months from my last surgery.

    I am wondering if this ever go away or at least slows down. Onc. seems non-commital. There is only one certified massage therapist for this problem in our area that I've been able to find and she's quite a ways away.

    I had the seroma after my surgery
    I had the seroma, an accumulation of fluid under my arm after my surgery. It took about five or six weeks to resolve after many manual aspirations over the first few weeks post operatively. I was reading that the aspirations themselves can cause problems and may lead to lymph edema.
    Now after 13 radiation treatments, I have swelling of the breast and arm. My doc did not uttered the words Lymphedema except after I asked about treatment of the swelling. He finally said, I'll refer you to "Physical therapy to be evaluated by a Lymphedema specialist". The nurse and I were talking and she validated my concerns. She is a BC survivor of two years and also experienced lymph edema that she says is no longer problematic.She says she was helped in PT with massage, exercise and the compression sleeve. It seems that there are few lymphedema specialists around and not all insurances pay for PT for lymphedema. I went on the Lymphedema website and did a little research. My Mom also had it after her radiation many years ago. It never totally disappeared but she was not disabled by it, she was still bowling for many years. Hoping for a resolution of the problem.
    If I get any helpful information, I will be sure to share it.
    Hugs, K
  • Kylez
    Kylez Member Posts: 3,761 Member
    #15
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    KayNYC said:

    I had the seroma after my surgery
    I had the seroma, an accumulation of fluid under my arm after my surgery. It took about five or six weeks to resolve after many manual aspirations over the first few weeks post operatively. I was reading that the aspirations themselves can cause problems and may lead to lymph edema.
    Now after 13 radiation treatments, I have swelling of the breast and arm. My doc did not uttered the words Lymphedema except after I asked about treatment of the swelling. He finally said, I'll refer you to "Physical therapy to be evaluated by a Lymphedema specialist". The nurse and I were talking and she validated my concerns. She is a BC survivor of two years and also experienced lymph edema that she says is no longer problematic.She says she was helped in PT with massage, exercise and the compression sleeve. It seems that there are few lymphedema specialists around and not all insurances pay for PT for lymphedema. I went on the Lymphedema website and did a little research. My Mom also had it after her radiation many years ago. It never totally disappeared but she was not disabled by it, she was still bowling for many years. Hoping for a resolution of the problem.
    If I get any helpful information, I will be sure to share it.
    Hugs, K

    I hope you do get some help
    I hope you do get some help Kay. It does sound painful. Be sure and let us know what you find that works for you.
  • washoegal
    washoegal Member Posts: 45
    #16
    Options
    KayNYC said:

    I had the seroma after my surgery
    I had the seroma, an accumulation of fluid under my arm after my surgery. It took about five or six weeks to resolve after many manual aspirations over the first few weeks post operatively. I was reading that the aspirations themselves can cause problems and may lead to lymph edema.
    Now after 13 radiation treatments, I have swelling of the breast and arm. My doc did not uttered the words Lymphedema except after I asked about treatment of the swelling. He finally said, I'll refer you to "Physical therapy to be evaluated by a Lymphedema specialist". The nurse and I were talking and she validated my concerns. She is a BC survivor of two years and also experienced lymph edema that she says is no longer problematic.She says she was helped in PT with massage, exercise and the compression sleeve. It seems that there are few lymphedema specialists around and not all insurances pay for PT for lymphedema. I went on the Lymphedema website and did a little research. My Mom also had it after her radiation many years ago. It never totally disappeared but she was not disabled by it, she was still bowling for many years. Hoping for a resolution of the problem.
    If I get any helpful information, I will be sure to share it.
    Hugs, K

    Yeah...my doc has yet to utter "lymphedema"
    Before I had my lymph nodes removed I was told of the risk of lymphedema in the arm. But I was never warned of any chance of it in the breast or the trunk, which now I read is not uncommon. However until about a week ago it threw me for a loop. And the doctor, while supportive, really doesn't help much. I'm glad this site is here. I just ordered a minimizing bra, figured if a compression sleeve works, why not try that. Let you know. At least it might help those who have the breast lymphedema and it's an inexpensive solution.
  • susie09
    susie09 Member Posts: 2,930
    #17
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    aisling8 said:

    Sorry
    Kay,

    I'm sorry to see that you're struggling with this situation. Sounds like a concern and no fun at all.

    Wishing you good luck with it,

    Victoria

    I know that having
    I know that having lymphedema can be very painful. Several on here have it. Looks like you have been given some good information already. Wishing you luck!
  • KayNYC
    KayNYC Member Posts: 495 Member
    #18
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    washoegal said:

    Yeah...my doc has yet to utter "lymphedema"
    Before I had my lymph nodes removed I was told of the risk of lymphedema in the arm. But I was never warned of any chance of it in the breast or the trunk, which now I read is not uncommon. However until about a week ago it threw me for a loop. And the doctor, while supportive, really doesn't help much. I'm glad this site is here. I just ordered a minimizing bra, figured if a compression sleeve works, why not try that. Let you know. At least it might help those who have the breast lymphedema and it's an inexpensive solution.

    Have been in touch with three physical therapy centers already
    I have to say that the swelling of the breast and under the arm is not as painful as the seroma that I had after surgery. It is worse at the end of the work day. I elevate my arm in the evening and I try to keep it elevated when I sleep.
    Seems there is an epidemic of lymphedema or scarce lymphedema services. I live and work in Manhattan and have yet to find a center where I can get the PT or OT for the lymphedema without waiting until the end of the summer.Seems everyone is booked and scheduled for much of the summer. I called my insurance company for a list and they sent pages of physical therapists in private practice but without mention of them having specialized lymphedema training. I am still searching for the services but may check with my local surgical supply store for a fitting for the sleeve to use in the meantime. Thanks for the helpful advice.
    Hugs, K
  • New Flower
    New Flower Member Posts: 4,294
    #19
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    KayNYC said:

    Have been in touch with three physical therapy centers already
    I have to say that the swelling of the breast and under the arm is not as painful as the seroma that I had after surgery. It is worse at the end of the work day. I elevate my arm in the evening and I try to keep it elevated when I sleep.
    Seems there is an epidemic of lymphedema or scarce lymphedema services. I live and work in Manhattan and have yet to find a center where I can get the PT or OT for the lymphedema without waiting until the end of the summer.Seems everyone is booked and scheduled for much of the summer. I called my insurance company for a list and they sent pages of physical therapists in private practice but without mention of them having specialized lymphedema training. I am still searching for the services but may check with my local surgical supply store for a fitting for the sleeve to use in the meantime. Thanks for the helpful advice.
    Hugs, K

    if you go to manufacture websites
    you can find how to do proper measurements for the sleeve.Tp prevent you need to avoid being outside at hot temperatures (above 85F),
    hot tubs. More than 1 glass of wine made my lymphedema worst, now I am avoiding alcohol. Yes, unfortunately lymphedema specialists are difficult to find.

    You do need a prescription in order to be reimbursed for the sleeve and glove (if you need one) by insurance. I was given prescription twice initially by my Surgical oncologist and second time by my Radiologist.
    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, Mediven. The most important is having a correct size, You can be measured in the store, or but better by lymphedema therapist.

    This link could very useful http://www.lymphnet.org/. I can mail you some information if you interested.

    Take care,
    New Flower
  • Rague
    Rague Member Posts: 3,653 Member
    #20
    Options
    New Flower said:

    if you go to manufacture websites
    you can find how to do proper measurements for the sleeve.Tp prevent you need to avoid being outside at hot temperatures (above 85F),
    hot tubs. More than 1 glass of wine made my lymphedema worst, now I am avoiding alcohol. Yes, unfortunately lymphedema specialists are difficult to find.

    You do need a prescription in order to be reimbursed for the sleeve and glove (if you need one) by insurance. I was given prescription twice initially by my Surgical oncologist and second time by my Radiologist.
    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, Mediven. The most important is having a correct size, You can be measured in the store, or but better by lymphedema therapist.

    This link could very useful http://www.lymphnet.org/. I can mail you some information if you interested.

    Take care,
    New Flower

    level of compression
    The level of compression is as important as the size. The problems I've been having have been due to my Lymphademologist wanting to start with the highest level of compression. When the first set came in and I put them on, almost immediately my hand and arm ballooned up huge. A med. compression set was ordered and it still caused swelling too. I picked up my light compression sleeves last Friday and they are working great - not ideal but much better. Glove will be ordered next week.

    If you don't fit into the pre-determined sizes, custom sleeves and gloves can be ordered. My hands are broad and fingers are short and somewhat webbed so standard gloves won't fit right. My arms are longer than they should be for the circumferences so custom are needed for them too. Not to forget night sleeves either.
  • KayNYC
    KayNYC Member Posts: 495 Member
    #21
    Options
    New Flower said:

    if you go to manufacture websites
    you can find how to do proper measurements for the sleeve.Tp prevent you need to avoid being outside at hot temperatures (above 85F),
    hot tubs. More than 1 glass of wine made my lymphedema worst, now I am avoiding alcohol. Yes, unfortunately lymphedema specialists are difficult to find.

    You do need a prescription in order to be reimbursed for the sleeve and glove (if you need one) by insurance. I was given prescription twice initially by my Surgical oncologist and second time by my Radiologist.
    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, Mediven. The most important is having a correct size, You can be measured in the store, or but better by lymphedema therapist.

    This link could very useful http://www.lymphnet.org/. I can mail you some information if you interested.

    Take care,
    New Flower

    Thanks for the offer to share the info
    I have been reading alot about Lymphedema online and the boards on csn. Which sleeve worked the best for you? My PT wanted a compression of 15-20 but when I called the Pharmacy where the fitter is employed, they told me that they only have them for 20-30. I contacted the PT who said ideally, the 15-20 would be best however the 20-30 would also work. Since the fitter can't see me until Tuesday, I am planning to use her measurements to order an additional sleeve from online companies where I have seen sleeves with 15-20 compression.
    Yes, I was told to avoid suanas, jacuzzi, sunburn, insect bites, repetitive movements, extremes in temperature and injuries to the arm (no cutting of cuticles).The NP in my Medical Onc's office has a script ready for me to pick up on Monday. She said that and possibly a letter, may be necessary to get my insurance company to pay for the sleeve. I see the Rad Onc for my first month post- rad check-up on Monday. I will also ask him for one so I can order the second sleeve online directly from the manufacturer.
    It is surprizing that there are so few lymphedema resources at the hospital where I am treated and work. The NP agreed that such services are sorely needed.When I was diagnosed with bilateral carpal tunnel syndrome several years ago, I was measured and provided the hand (gloves) braces for day and night use on the same floor of the orthopedic service where I saw my doctor. Amazing that at a such a large and well renowned teaching, medical center, lymphedema serices are so limited.
    Thanks for your helpful information.
    Hugs, K

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