Lymphedema Risk and Acupuncture?

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mimikitty
mimikitty Member Posts: 30 Member
Hi There,

I'm scheduled for a lumpectomy and sentinel node removal on Thursday. My husband is an acupuncturist and wants to acupuncture me after my surgery and while I'm receiving radiation therapy. I'm a bit freaked out about the potential of getting lymphedema after my node removal. Does anyone know if there is a risk to get lymphedema from just acupuncture needles applied to the affected arm and breast? My husband doesn't think I'm at risk because I am in excellent health aside from the breast cancer and am in very good physical shape.

Thanks in advance for any feedback.

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  • tufi000
    tufi000 Member Posts: 745 Member
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    What my doc said
    I have large dogs and , in their enthusiasm, bonk me to pieces with affection. I also do artwork and I occasionally get cut. Onc said that as long as there is NO DANGER of infection, there is no problem ( as he gazed at a bruise that looked like a paw print tattoo!)

    Having said that, you still need to talk to your docs about it.

    Curious, other than pain (of which I had not much) what would be its purpose? FASCINATING!
  • mimikitty
    mimikitty Member Posts: 30 Member
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    tufi000 said:

    What my doc said
    I have large dogs and , in their enthusiasm, bonk me to pieces with affection. I also do artwork and I occasionally get cut. Onc said that as long as there is NO DANGER of infection, there is no problem ( as he gazed at a bruise that looked like a paw print tattoo!)

    Having said that, you still need to talk to your docs about it.

    Curious, other than pain (of which I had not much) what would be its purpose? FASCINATING!

    To Release Chi Blockage
    Thank you tufi000. That is helpful. I get acupuncture a lot and have never had an infection from it. I haven't had a chance to talk to the docs yet about lymphedema risk yet. I'm just freaking myself out with a packet I received from their office about do's and don'ts for lymphedema, and googling it.

    My husband uses his acupuncture to reduce chi blockage that comes from the trauma of surgery. It also helps reduce the scarring significantly. Chi blockage can impact healthy blood and oxygen flow to the surgery site and to other nearby areas such as my heart and lungs.
  • missrenee
    missrenee Member Posts: 2,136 Member
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    mimikitty said:

    To Release Chi Blockage
    Thank you tufi000. That is helpful. I get acupuncture a lot and have never had an infection from it. I haven't had a chance to talk to the docs yet about lymphedema risk yet. I'm just freaking myself out with a packet I received from their office about do's and don'ts for lymphedema, and googling it.

    My husband uses his acupuncture to reduce chi blockage that comes from the trauma of surgery. It also helps reduce the scarring significantly. Chi blockage can impact healthy blood and oxygen flow to the surgery site and to other nearby areas such as my heart and lungs.

    Here's what I was told
    NO needles or BP checks on affected arm--ever. I do have swelling in my breast from lumpectomy and occasionally tightness and soreness in that upper arm. I have been to a certified lymph specialist, have a sleeve and glove for flying and have a Flexi-touch machine for lymphatic drainage on that side when necessary.

    All of my experts said the same thing: NO needles or BP checks on that arm ever. Just relating my experience to you.

    P.S.--Since my sentinal node was positive, I had an additional 22 nodes removed (10 total positive).

    Good luck on your journey.

    Hugs, Renee
  • mimikitty
    mimikitty Member Posts: 30 Member
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    missrenee said:

    Here's what I was told
    NO needles or BP checks on affected arm--ever. I do have swelling in my breast from lumpectomy and occasionally tightness and soreness in that upper arm. I have been to a certified lymph specialist, have a sleeve and glove for flying and have a Flexi-touch machine for lymphatic drainage on that side when necessary.

    All of my experts said the same thing: NO needles or BP checks on that arm ever. Just relating my experience to you.

    P.S.--Since my sentinal node was positive, I had an additional 22 nodes removed (10 total positive).

    Good luck on your journey.

    Hugs, Renee

    This is Scary
    Tempted to ask the surgeon to leave my lymph nodes alone and just remove the tumor. So far, they look fine on the MRI and various docs felt them and they feel normal. Also, the oncologist told me my cancer is not aggressive. To me the side effects and risk of lymph node removal seem devastating, as I am used to freely using my body. I have absolutely no symptoms associated with this breast cancer. I may go with leave the lymphs alone and I'll change my lifestyle and do alternative therapies just a case some cancer cells might have migrated there.
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
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    I had a bilateral with
    I had a bilateral with axillary node dissection on the left cancer side. I was told no needles and no BP on either arm. (We do blood draws and BP from my foot/leg.)

    I have LE on left in the arm, chest, and back. Like Renee I have been seeing a certified LE physical therapist since my bilateral.

    While on chemo, my onc said no to acupuncture because of the risk of infection. But I do wonder if proactive acupuncture might prevent the LE from developing in the first place...

    Let us know what you decide, and best wishes with your treatment plan.

    Hugs,

    Linda
  • mimikitty
    mimikitty Member Posts: 30 Member
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    I had a bilateral with
    I had a bilateral with axillary node dissection on the left cancer side. I was told no needles and no BP on either arm. (We do blood draws and BP from my foot/leg.)

    I have LE on left in the arm, chest, and back. Like Renee I have been seeing a certified LE physical therapist since my bilateral.

    While on chemo, my onc said no to acupuncture because of the risk of infection. But I do wonder if proactive acupuncture might prevent the LE from developing in the first place...

    Let us know what you decide, and best wishes with your treatment plan.

    Hugs,

    Linda

    Yes, my husband believes in "proactive acupuncture"
    So sorry to hear that you have LE! My husband believes proactive acupuncture will be good for it. Well, I thought I'd ask here to gain others' experience before I make a decision about it.
  • New Flower
    New Flower Member Posts: 4,294
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    having excellent health has nothing to do with lymphedema
    as well as good physical shape is not a prediction for lymphedema as well. it is a perception. it is often used by oncologist to convince patients for undergoing cancer treatment procedures which have risks including lymphedema. According my lymphedema therapist, lymphedema is not well-recognized by medical community, and a result statistics does not represent the real situation.
    There are precautionary measures one can take for reducing risk of it. Not having puncture on affected arm and hand is one of it.

    New Flower
  • New Flower
    New Flower Member Posts: 4,294
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    mimikitty said:

    Yes, my husband believes in "proactive acupuncture"
    So sorry to hear that you have LE! My husband believes proactive acupuncture will be good for it. Well, I thought I'd ask here to gain others' experience before I make a decision about it.

    Very high risk especially during radiation
    Hi,
    While on radiation immune system is compromised. I hope your husband will study lymphatic system before his actions. There are no studies supporting his idea.
    Affected side including hand, arm and shoulder should not used for tha. You can use your leg and foot and other side, neck and had.
    I undergone 6 months of acupuncture for recovery after my treatment and for insomnia.
    I have never used my affected hand and arm for it, it was my job to educate acupuncturist about potential risks and guide them on what parts of the body should be used. There are a lot of points to choose without compromising affected areas.
    Good luck
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
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    I always find it good to ask
    I always find it good to ask my doctors/surgeons about things before I do them and educate myself with reputable sources. Here are a few I have found for you:

    http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/Lymphedema/WhatEveryWomanwithBreastCancerShouldKnow/index

    http://www.breastcancer.org/search.jsp?terms=lymphedema

    http://www.lymphnet.org

    Those are some reputable sites. If you read them, needle pokes put you at risk. It is no longer just a matter of getting an infection at the site of opened skin.
  • tufi000
    tufi000 Member Posts: 745 Member
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    mimikitty said:

    To Release Chi Blockage
    Thank you tufi000. That is helpful. I get acupuncture a lot and have never had an infection from it. I haven't had a chance to talk to the docs yet about lymphedema risk yet. I'm just freaking myself out with a packet I received from their office about do's and don'ts for lymphedema, and googling it.

    My husband uses his acupuncture to reduce chi blockage that comes from the trauma of surgery. It also helps reduce the scarring significantly. Chi blockage can impact healthy blood and oxygen flow to the surgery site and to other nearby areas such as my heart and lungs.

    I see
    I am also one of the no needles, no BP on my right arm. The only diff here is the "needle" isn't an IV which is the limitation expressed by that rule. But do consider your immune system and other stuff people have mentioned and openly listen to the input from your docs. Much of the benefits you site can also be affected with meditative techniques, and trust me, I am glad I have scar tissue and not lymphodema.
  • Rague
    Rague Member Posts: 3,653 Member
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    No Needles
    I was very emphatically told No Needles at all. - no BP either.

    Being healthy (other than BC), fit, active does not keep you from developing LE. I had no health issues, was quite active and fit and good diet but developed LE while still on Taxol. I had no infections either. The more nodes that are taken makes it more likely but even one taken can result in LE.

    Unfortunately, there are many Drs who have no clue about LE and dealing with/managing it. I would suggest asking for a Referral to a Certified Lymphedema Therapist (not some PT who claims to 'know' about LE unless they are also a Certified Lymphema Therapist - my LE guy hashis Master's in OT and his LE Certification). There is lot more to getting the right garments (IF needed) than just getting one off the shelf that can be put on. Sizes are different as is the compression level. For me I do not fit in any of the stock sizes so have to have custom ones. Also have to have light compression as heavy makes the swelling much worse. We're all so different.

    LE can develope in breast and body also.

    If you do develope LE it is not the 'end of the world'. It doesn't go away ever but it can be managed and you can continue to do what ever you want to. I still do everything and anything I want to do (or have to do). However, it does take management - compression garments (custom day sleeves and gloves and a night sleeve), MLD (Manual Lymphatic Drainage) massage and an MLD machine (FlexiTouch).

    Winyan - The Power Within

    Susan
  • mimikitty
    mimikitty Member Posts: 30 Member
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    Rague said:

    No Needles
    I was very emphatically told No Needles at all. - no BP either.

    Being healthy (other than BC), fit, active does not keep you from developing LE. I had no health issues, was quite active and fit and good diet but developed LE while still on Taxol. I had no infections either. The more nodes that are taken makes it more likely but even one taken can result in LE.

    Unfortunately, there are many Drs who have no clue about LE and dealing with/managing it. I would suggest asking for a Referral to a Certified Lymphedema Therapist (not some PT who claims to 'know' about LE unless they are also a Certified Lymphema Therapist - my LE guy hashis Master's in OT and his LE Certification). There is lot more to getting the right garments (IF needed) than just getting one off the shelf that can be put on. Sizes are different as is the compression level. For me I do not fit in any of the stock sizes so have to have custom ones. Also have to have light compression as heavy makes the swelling much worse. We're all so different.

    LE can develope in breast and body also.

    If you do develope LE it is not the 'end of the world'. It doesn't go away ever but it can be managed and you can continue to do what ever you want to. I still do everything and anything I want to do (or have to do). However, it does take management - compression garments (custom day sleeves and gloves and a night sleeve), MLD (Manual Lymphatic Drainage) massage and an MLD machine (FlexiTouch).

    Winyan - The Power Within

    Susan

    Thank you Susan. I'm sorry
    Thank you Susan. I'm sorry you ended up with it. May I ask how many lymph nodes you had removed? My surgeon said she would only remove two and hopefully there's no going back in for more. I hate the idea of limiting my lifestyle to accomodate the risk of lymphedmia. I put a lot of weight on my arms in my yoga practice (handstands, etc.), and I can't imagine forgoing that because the lymphedima pamphlet says I shouldn't carry more than 25 lbs. There is a major part of me that is willing to take the risk and assume the cancer did not spread and just leave the lymphs alone please. I can hopefully take care of any possible micrometastatis with alternative therapies - I am currently doing gerson therapy almost religiously.
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    mimikitty said:

    Thank you Susan. I'm sorry
    Thank you Susan. I'm sorry you ended up with it. May I ask how many lymph nodes you had removed? My surgeon said she would only remove two and hopefully there's no going back in for more. I hate the idea of limiting my lifestyle to accomodate the risk of lymphedmia. I put a lot of weight on my arms in my yoga practice (handstands, etc.), and I can't imagine forgoing that because the lymphedima pamphlet says I shouldn't carry more than 25 lbs. There is a major part of me that is willing to take the risk and assume the cancer did not spread and just leave the lymphs alone please. I can hopefully take care of any possible micrometastatis with alternative therapies - I am currently doing gerson therapy almost religiously.

    Do your research and discuss honestly with your oncologist
    Alternative treatments can be wonderful in preventing recurrences and helping with side effects. Many physicians are actually educated in them and some recommend them - but they use them as integrative therapy (in addition to traditional treatments)not in lieu of. Please be honest and open with your physicians and discuss your concerns and wishes with them. It's ultimately your decision to treat or not treat your cancer and to follow or not follow the advice of your physicians, but you may find it difficult to convince a breast cancer surgeon to ignore your lymph nodes. The theory of taking only the sentinel nodes is to remove them, look at them microscopically, and if clear, then they don't need to remove any others as it's very unlikely cancer cells would skip the sentinel nodes and settle in others. But if the sentinel nodes do contain cancer, the only way to know if there's cancer in the remainder is to remove those too.

    I had 2 nodes removed 2 years ago. I have no lymphedema and the majority of women who have only sentinel nodes removed don't get it. However, I have no blood drawn, IV, or BP in that arm. It's a preventative measure. I have never been advised not to do handstands . . .

    Breast cancer is not a cold.
  • mimikitty
    mimikitty Member Posts: 30 Member
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    Do your research and discuss honestly with your oncologist
    Alternative treatments can be wonderful in preventing recurrences and helping with side effects. Many physicians are actually educated in them and some recommend them - but they use them as integrative therapy (in addition to traditional treatments)not in lieu of. Please be honest and open with your physicians and discuss your concerns and wishes with them. It's ultimately your decision to treat or not treat your cancer and to follow or not follow the advice of your physicians, but you may find it difficult to convince a breast cancer surgeon to ignore your lymph nodes. The theory of taking only the sentinel nodes is to remove them, look at them microscopically, and if clear, then they don't need to remove any others as it's very unlikely cancer cells would skip the sentinel nodes and settle in others. But if the sentinel nodes do contain cancer, the only way to know if there's cancer in the remainder is to remove those too.

    I had 2 nodes removed 2 years ago. I have no lymphedema and the majority of women who have only sentinel nodes removed don't get it. However, I have no blood drawn, IV, or BP in that arm. It's a preventative measure. I have never been advised not to do handstands . . .

    Breast cancer is not a cold.

    Thanks everyone. This is an
    Thanks everyone. This is an extremely confusing and distressing time for me. Your feedback on my questions are helping me greatly.
  • missrenee
    missrenee Member Posts: 2,136 Member
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    mimikitty said:

    Thanks everyone. This is an
    Thanks everyone. This is an extremely confusing and distressing time for me. Your feedback on my questions are helping me greatly.

    Just one more thought (opinion) from me
    I would strongly suggest allowing the doctor to remove the 1 or 2 lymph nodes to check for spread. Your surgeon may not even consider not biopsying them. There is no way to tell on physical examination or MRI if they have cancer in them. If there is cancer in them and they are left in, the outcome would be far worse than dealing with the POSSIBILITY of lymphedema.

    Most of us are afraid and wish we didn't have to deal with all the side effects and consequences, but don't let that guide your decision to do the right thing. Discuss this thoroughly with all your professionals.

    Good luck--you can do this and you will be okay.

    Hugs, Renee
  • mimikitty
    mimikitty Member Posts: 30 Member
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    missrenee said:

    Just one more thought (opinion) from me
    I would strongly suggest allowing the doctor to remove the 1 or 2 lymph nodes to check for spread. Your surgeon may not even consider not biopsying them. There is no way to tell on physical examination or MRI if they have cancer in them. If there is cancer in them and they are left in, the outcome would be far worse than dealing with the POSSIBILITY of lymphedema.

    Most of us are afraid and wish we didn't have to deal with all the side effects and consequences, but don't let that guide your decision to do the right thing. Discuss this thoroughly with all your professionals.

    Good luck--you can do this and you will be okay.

    Hugs, Renee

    Update - Doctors' Opinions
    Thanks for your inputs everyone. I wanted to follow-up this discussion with an update from my separate talks with both my surgeon and oncologist. Both of them said that if only 1 or 2 nodes are removed that after I heal, I can continue to do acupuncture on the affected side as well as arm-intensive yoga moves because I would have an extremely low risk of getting lymphedema. It's because I am thin (5' 4", 106 lbs) and small-chested (34B). The surgeon only ended up removing one node (and it was cancer free - wohoo!). They both said that if more nodes were removed, we would have had to revisit this question though.
  • waffle8
    waffle8 Member Posts: 234
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    mimikitty said:

    Update - Doctors' Opinions
    Thanks for your inputs everyone. I wanted to follow-up this discussion with an update from my separate talks with both my surgeon and oncologist. Both of them said that if only 1 or 2 nodes are removed that after I heal, I can continue to do acupuncture on the affected side as well as arm-intensive yoga moves because I would have an extremely low risk of getting lymphedema. It's because I am thin (5' 4", 106 lbs) and small-chested (34B). The surgeon only ended up removing one node (and it was cancer free - wohoo!). They both said that if more nodes were removed, we would have had to revisit this question though.

    acupuncture
    I had 3 nodes removed! I know everyone is different! I have had acupuncture done lots of times since and not had a problem! Love the benefits from that and the yoga! Whatever makes you feel better works for me!
  • pchinlq
    pchinlq Member Posts: 4
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    Don't know about risk due to acupuncture
    Don't know about risk due to acupuncture, but what I do know after having a lumpectomy, sentinel node removal and radiation is that you can develop lymphedema of the breast, because I have. I've had celluitis 3 times since the end of my radiation treatment and something as seemingly small as scratching an itchy breast can lead to infection and I consider myself a very clean person, but no matter. Doesn't mean it will happen to you because each one of us responds differently.

    If you do run into some road blocks, I've learned a few things along the way and would be happy to share.

    Wishing you the very best and quick healing.